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Clashboy

04-05-2009, 11:14 AM

Dear Kira and Brad,

Thanks for the advice. Sugary drinks make me feel better too when I have a migraine and now this carnitor is making me nauseous so I have been drinking some Coca Cola. I don't ever use aspartame because it has in the past made me feel horrible. But with my sugar kinda high at 102, I think I will try the new Truvia sweetner. It is 100% natural, supposedly. I did finally find something yesterday afternoon that spoke of the ills of Splenda and mentions affects on metabolism. It is at:
http://www.wnho.net/splenda_chlorocarbon.htm
I think the two of you would find it interesting.
Brad,
I have forgotten smoothies, I used to make a while back and just fell out of the habit. Your recipe looks terrific. I am going to try it this week. I have to go out and buy some bananas. I might use a low fat yogurt though. The Doc said I have to have a little fat in the mornings for the coQ10 to be effective. I know that is not an issue for you as I remember you mentioning stopping the cocktail.
Kira,
Did you have any side effects on the Carnitor and if so, does it pass over time? I guess everyone if different; however, as I said it has made me so nauseous, I can't get the third pill down at night.
To both of you, please take care and thank you. I hope you both have a good week coming up and feel great as well. Happy Sunday

Kira

04-05-2009, 12:40 PM

Clashboy,

The Carnitor does have some GI side effects, especially when first starting, but those get better over time. My mito doc had me go up gradually when first starting it in order to avoid the GI effects. I think I take a lot more than you are on, though, if you are on 3 pills/day. I take a total of 4000 mg/day of the liquid (was technically 3960 when I was on the pills)... was equivalent to 3 pills 4x/day. Also I am on a LOT more CoQ10 I think, because I take that 4x/day as well... total of 1600 mg/day.

I noticed that the GI effects are less when the doses are spaced out more, and also for some reason they seem less on the liquid than when I was on the pills. I actually recently switched to the liquid because I was throwing up so much that I wasn't keeping the pills down... though my vomiting is b/c of cyclic vomiting and gastroparesis, not from the carnitine itself.

Anyway, I would put the Carnitor dose back down a bit (like 1/day) and then gradually work up to 3/day (or whatever your dose is), over several days or more. I know that you want to be on the full dose of all of this stuff since now you know it is mito, but realistically you have had mito your whole life and weren't on the supplements until now, so the small amount of time it takes to gradually increase the dose probably doesn't matter too much.

If you still have trouble, I would see about getting the liquid. You can dilute it in beverages, etc if having trouble keeping it down, and for some reason it is just easier to take.

Re: the CoQ10 and Carnitor doses... I'm not saying that you necessarily should be on mega-doses like I am... I have no idea how they calculate the doses for those supplements. But it might be something to ask the docs (yours, mine) about if curious.

Clashboy

04-06-2009, 12:07 PM

Thanks Kira,
I am only on a 1000 mg of the Carnitor as they are starting me out on a low dose. I am on 400mg of CoQ10. I dread taking the Carnitor as I was ill all day yesterday from it; but I am going to try again today.
Thanks and take care

Prop1

04-06-2009, 01:09 PM

Carnitor, from what I've read, is a supplement carrier molecule that helps in the transport of long-chain fatty acids across the inner mitochondrial membrane. This must be why it didn't work for me. It's suspected that my condition is CPT2. That's where there is lack of the enzyme needed to release the long-chain fatty acids from the CPT1 carrier so it can be used. I hope it ultimately helps you, Clashboy.

On another note, since starting on the Niacin, I haven't been feeling well. All I want to do is sleep. I'm weak, unsteady, and my mind is foggy. I can live with the niacin "flush", but the increase in the other stuff, I can live without. As usual, every time an attempt is made to fix one of my symptoms that are obviously the results of the Dysautonomia, I get worse.:(

Clashboy

04-07-2009, 10:18 AM

Brad,
I was going to try this for my cholesterol/triglycerides
http://www.arizonapharmaceuticals.com/nialor.html
I don't know if this type of Niacin will cause the same symptoms you are having or maybe a cheaper "no flush" Niacin. I can't take the Niacin that makes me flush either, but my wife has the "no flush" variety and I'm fine on that. I too have dysautonomia and I have not noticed an increase in my fatigue, lightheadness or sweating while taking the "no flush" kind. Let me try this Nialor first and I will let you know. Maybe you could try the no flush and see if that works for you?
I am so sorry this happened to you, God I hate the days where you can't get out of bed. Hate them. I think that is the worst part of this disease, that and the muscle pain.
Thanks for the info on the Carnitor. Since following Kira's recommendation of titrating up (I am trying one pill and will go up to two tomorrow), I have had just a bit of the nausea. I appreciate you letting me know what it does regarding the transport.
How are you (and Kira) handling the depression or do the two of you have that? I do. I take Cymbalta. Also, I don't remember reading if either of you had a lot of muscle pain. I know you (Brad) have a tremendous amount of leg weakness and I remember reading that Kira has to stay on the couch a lot because of the fatigue and nausea; however, I don't recall the two of you ever speaking much about pain. Maybe I just have not read the correct messages. Do the two of you experience a lot of pain? I have symmetrical limb pain and neck pain that drives me crazy and I hate taking the medications for it (Methadone and Oxycodone); however, if I don't, I am in screaming pain. I just wanted to know and if the either of you take anything else for it. I believe the Methadone and Oxycodone contribute to my fatigue and you mentioning the Niacin and fatigue made me think about it. I wish I was less tired all the time.
Thank you Brad. I hope you get to feeling better off of the flushing Niacin.

Prop1

04-07-2009, 10:53 AM

According to what I have read, the flushing is a good sign. It means the capillaries are opening up and the toxins that have been trapped in the cells are being flushed out. The Nialor contains policosanol. I tried a supplement of that for my cholesterol. It didn't help me. What it does is prevent the absorption of cholesterol from your food intake. My diet is so low in fat that that isn't where my cholesterol is coming from. Mine is all being manufactured in the liver. That's where the niacin is supposed to help.

Regarding pain. I never have a day when I don't have pain, but the pain tells me when I'm doing too much and need to rest. Mostly I control it by keeping my mind occupied. I found the more pain killers I took, the worse I was getting because I couldn't tell when I was over doing whatever activity I was doing. It was truly a Catch-22. I now only use Aleve when the pain is to the point that I can't maintain mind control over it. In my case, it seems the more drugs I take, the harder it is for me to control the way I want to feel. I'd rather feel, than not feel and create more damage which creates more pain.

Clashboy

04-07-2009, 12:30 PM

Brad,
Thanks, I remember you addressing the "rather feel when you have overdone it." I appreciate the cholesterol information because supposedly, mine is coming from my liver as well. In fact, I have a fatty liver which I was told was not uncommon in Mito patients. The flushing action of the Niacin is interesting in terms of it ridding the cells of toxins. Now that I know that, I am thinking about trying the plain Niacin. I admire your resolve pertaining to the pain killers. I just can't take the pain, it truly gets to the unbearable point; however, I want to be off these strong painkillers.
I went through a period of about 4 years (3 years ago);whereby, I was on no medications at all. All I took was NADH. This was back when they told me I had Chronic Fatigue Syndrome and did not know I had Mito. Now I am back on all of this crap and I wonder if I would be better off just taking the Carnitor and the Vitamins and maybe ibuprofen or Aleve for the pain. I take 20 mgs of Methadone, Oxycodone for breakthrough pain, 800mgs of Ibuprofen 2x a day, 1.5 mgs of Klonopin for the fasiculations and cramping, etc., etc. I hate to whine but I am starting to think your philosophy may be the better one in the long run. I did get off of all of the aforementioned before and felt better, more normal. I still had some symptoms but basically felt normal, not like having the flu all the time which I equate how I feel now. But when this relapse hit me three years ago, it never went away, it just steadily worsened, and the pain was and still is incredible to the point of crying like a wimp. I don't comprehend the concept of remissions and relapses and will never understand why I went into a period of remission that lasted 4 years only to be hit harder than ever before with this relapse (which I fear is permanent). I look back and try to think about what I did to get me to a remission state. What was the formula that led me back to almost complete normality? I just don't know yet. However, I am going to speak with the neuromuscular specialist about titrating off some of these drugs. One last question and I will stop bugging you. I know you have a scooter. I use a cane; however, most of the pain eminates from my legs. If I am on my feet, the more pain I have. Do you believe the scooter has aided in preventing pain? Or, is it more of a necessity in terms of inability to get around without it? I am not trying to get too personal, I just have been thinking if I had a chair, I could do more during the day (or in my life) and prevent the pain; thus, allowing me to get off the pain killers. But then I worry about becoming too dependent on the chair. That's my Catch 22 thinking. Thanks Brad, I will stop here - don't want to be a bother. As always, I appreciate the advice from both you and Kira.

Prop1

04-07-2009, 01:34 PM

I forgot to mention that over the past few days, since reading an article on niacin, I have been taking the niacin before bed with a light snack. My flushing happens 1-2 hours after I take it. It helps taking it before bed because now the flushing happens when I'm a sleep.

I was, for the most part, in remission from '96 until '01. That's when between a moron neighbor that didn't know how to raise dogs and they became very vicious, and because of all the calls to animal control, he sued me. Then my career becoming more physical and stressful to the Nth degree, mine flared with a vengeance. It's been on average, downhill since. The stress was probably the biggest factor, and is why I do my best to control it now.

Regarding the scooter. It only gets used when I take my dogs for a walk, go to the mall, the zoo, any place that would require extensive walking. The rest of the time I get along with a cane at a slow pace for short periods. I always pick my best day of the week to get some exercise by going to the grocery store. I'm spent and in pain for a few hours after wards, but I do it slow and rest when I need to. It helps too that I hit the frozen food isles last so I'm not rushing to prevent the frozen stuff from melting.

I think it's important to get what exercise one can get, but know your limits so you don't exceed it and make things worse.

Clashboy

04-08-2009, 09:17 AM

Thanks Brad,
I am taking an aquatics class for exercise. Did the MDA help pay for the chair/scooter? Also, I am glad to know someone else had a period of remission so to speak and then a relapse (or flareup). Has Kira had any remissions? Last question, why is the Mitochondrial Group (or threads) so dead? It seems it is just the 3 of us and I was reading old posts and there were so many people that were involved back in 2007 (for example). It gets lonely and it is nice to have the contact and the knowledge that others can provide. I guess that really is an observation and not a question, so forget that one.

Prop1

04-08-2009, 09:54 AM

My wife's insurance paid for the bulk of the cost, and the MDA paid the difference. You can get a replacement every 2 years and the old one gets donated to the MDA.

I don't remember in all her posts whether Kira had a remission. From what I've read, it's pretty common to have periods of remission, followed by flareups. But it seems every remission doesn't get back to where you were before, and each flareup gets longer and worse.

As far as the posting here, I can't say for sure. I visited this mito section for some time without ever posting. It has been dead for a long time. I think it's mostly due to the rarity of the disease, and the fact that there are long periods where people aren't feeling up to posting. I do notice from looking at the views of the posts, there is a lot of activity here, just not much posting.

Kira

04-09-2009, 05:01 PM

Sorry to answer late but I've been in the hospital since Sun afternoon. I'm glad that titrating the Carnitor up slowly helps some. The GI stuff from it does go away. If it keeps being a problem I would defnitely talk to your doc about it, though, because mito and vomiting don't mix (because you can't eat when you're vomiting etc).

The main mechanism of carnitine is like Brad said... it carries fatty acids in & out of the mitochondria so they can be metabolized. When you take high doses of carnitine, there is also a secondary mechanism they think happens. It is supposed to help clear the toxic metabolic byproducts that accumulate in cells when there is a blocked metabolic pathway. (That is discussed on the package insert that comes with my liquid levocarnitine... I think it is also discussed on the insert that comes with the tabs).

Re: the Niacin... I don't take it because my cholesterol is currently fine. But if it is making you feel bad then I agree it is probably worth trying something else, or at least trying the "no flush" niacin. I hope you guys can find something that works for your cholesterol and doesn't make you sick.

Re: muscle pain... I have significant daily muscle pain and am on a fentanyl patch with oxycodone for breakthrough. On top of that, I get episodes of much more intense pain when I have rhabdomyolysis. For that, I am typically hospitalized anyway (like I was this past week)... while in the hospital we continue my fentanyl patch and also add on IV opiates (usually a morphine PCA) for a few days, then titrate down to oral oxycodone as I get better.

The other thing that has been surprisingly helpful for my muscle pain has been PT. My PT is seriously good at massage stuff... although in the PT world it is called manual therapy and includes myofascial release, etc. My muscle tissue has a LOT of tightness and scarring/calcifications from previous episodes of rhabdomyolysis, and the work my PT does on it has really helped loosen those areas up so I can move more normally. I also have stretches & some gentle exercises that I do at home to help with the most affected areas. I was skeptical when I started seeing this PT because I got nowhere with my last PT... but he is really good and it has helped a lot. For what it's worth.

Re: remissions... I have periods of feeling somewhat better in between my flares, but never get to where I actually feel "good" or where this all goes away. I get almost back to my baseline after each flare, but my baseline keeps gradually getting worse, if that makes sense.

Hope I answered everything. Sorry again about not answering sooner, but like I said I have been in the hospital with another attack of rhabdomyolysis.

Clashboy

04-14-2009, 11:38 AM

Dear Kira,
I thought you may be in the hospital or just very ill. I am so sorry you had another episode. I pray you will be feeling better. I have put you and Brad on my prayer list.
Thanks for letting me know about your pain meds, I tried the Fetanyl patch and had a negative reaction to it and had to discontinue and go back on the Methadone.
The PT is a good idea, I had the trigger point injections and myofascial release done about two years ago. I had forgot that was an option so thanks. I am going to call today to arrange another series of shots and massage as it did help quite a bit. Plus, we are moving to Asheville, NC and I believe the trigger point/myofascial release will help so that I can assist with packing.
I agree with Brad about stress contributing to flare-ups. I am so sorry that you don't have true remission periods where you feel "normal." I have not had a remission period for 5 years; but, do have short periods where I feel better like you do. It is comforting to know that the both of you have flareup periods with some periods of feeling better.
Kira, do you have to use a chair of some sort? I am really debating with myself regarding getting a chair or scooter. I think it will allow me to get out and do more with my family; however, I am fearful of becoming too dependent on it. Brad has a good philosophy on how he uses his, I just don't know if I could be a disciplined as he is.
Please take care of yourself, I am praying that you will be feeling better very soon. I just hate when I hear you have to go back to the hospital for these episodes.
Last thing, I also wanted to let you and Brad know of a supplement that I think makes me feel better. It is called NADH and here is a link for you and Brad to research http://en.wikipedia.org/wiki/NADH_dehydrogenase. I take 20 mgs in the morning before eating breakfast. You might already know about it given you know so much about all of the vitamins and meds. Also, I know Brad is very careful with the supplements he takes and I wanted to let him see the details regarding NADH; so, Brad, check out the link if you are interested. I believe it really helps me; however, if you don't know about it, you might want to ask your Doc about whether it would be okay to take. It is fairly expensive if you go out and buy it from a vitamin or health store. I buy mine off of the internet and use the Natrol brand of NADH. It costs about $20 - $25 for a months worth of the 20mg. It is covered with a chlorophyl coating so as to be absorbed by the intestines so I don't believe it would bother your stomach. I really believe it helps out with my level of energy and I think when we find something that helps, we should share it with each other.
Anyway, I hope you can rest and feel better by the weekend. You and Brad are the best! I will be praying for you.

Prop1

04-16-2009, 01:16 PM

Clash, I ordered some NADH. I'll see if it helps. I read some doctor reports on it. It's recommended that you only use it a few times a week, not every day, and not to exceed 5mg. Using it everyday can cause a backlash effect making things worse. I should get mine next week. I'll let you know the results.

Clashboy

04-16-2009, 07:00 PM

Brad,
Man I'm glad you found out about only taking 5mgs of the NADH at a time and not every day. I am stopping the 20's and buying the 5's. Thanks for researching that one.

Prop1

04-16-2009, 08:41 PM

Brad,
Man I'm glad you found out about only taking 5mgs of the NADH at a time and not every day. I am stopping the 20's and buying the 5's. Thanks for researching that one.

If you're using 20mg a day, you better back down slowly to the 5mg. The sudden change could slam you into a major flareup.

Kira

04-17-2009, 01:28 AM

I think I tried NADH a couple of years ago, but don't remember why I stopped it (maybe it didn't do much?)... I have no idea how much I took.

I am wondering if clashboy and I have different parts of Complex I that are affected. It is a Complex of proteins and I think there are a couple of different things that it does that can go wrong. My mutation is in NADH Dehydrogenase 5, and I have very very low NADH Dehydrogenase activity on my muscle biopsy. Here is where it gets complicated...

Basically, you can feed electrons into the electron transport chain (a.k.a. the respiratory chain -- Complexes I, II, III, IV, V) as NADH or FADH2. Then, the electrons get passed along the chain from complex to complex, building up this electrochemical gradient (basically stored energy for chemical reactions). When the electron(s) get to Complex V, the energy stored in the electrochemical gradient is used to make ATP (cells' preferred form of chemical energy).

So... NADH Dehydrogenase from Complex I binds the NADH and takes the electron off of it, starting the whole process going. Then that electron gets carried by CoQ10 to Complex III, and on down the line (skips Complex II). But my NADH Dehydrogenase doesn't work. So, to survive, my cells have to bypass that. And fortunately, they can.

It turns out that FADH2 (the other big source of electrons) can skip Complex I altogether and instead bind with Complex II. So an electron can be passed down the chain one of two ways: Complex I to III to IV to V, or Complex II to III to IV to V.

Anyway, I am totally hypothesizing here... but I am thinking that if you have SOME NADH Dehydrogenase function, then supplementing with extra NADH would be helpful to get that electron transport chain going. But if you have basically NO NADH Dehydrogenase function (like me), then supplementing with extra NADH wouldn't do much because it can't be used. At least I can bypass with Complex II. Complex II contains Succinate Dehydrogenase... as it reacts with succinate, it generates FADH2, which is a source of electrons. So maybe what I need is either succinate or FADH2. Hmmmm. Food for thought.

And this is ALL just me trying to say what I remember about mitochondrial metabolism and then hypothesize about how to get around my mutation. I could be totally, completely wrong here. Just brainstorming.

Hope you guys are feeling well. I am gradually getting better after last week's rhabdomyolysis & cyclic vomiting flare.

Prop1

04-17-2009, 09:15 AM

I have to agree with your analysis, Kira. That's probably why CoQ10, Carnitine, and other supplements haven't worked for me. If your deficiency is at the beginning of the chain, a supplement can help a lot. But the further down the chain, the less chance a supplement will help.

Clashboy

04-17-2009, 12:57 PM

Dear Kira and Brad,

I have no idea Kira regarding if I can metabolize NADH or not. They have not told me that much about my Complex I; however, I am going to ask them for all the pathology reports so I can become as knowledgeable as the both of you two are.
The CoQ10 is making me feel like crap so I stopped it. I have not seen much of a difference on the Carnitor yet Kira, I can stomach 2 pills a day and plan on upping it to three beginning Sunday.
I believe I am having an episode of rhabdomyolysis. I have urinary retention as a standard and now my urine is very brown. I have had this before, prior to being diagnosed. It has been going on for two days now. I also feel horrible, very fatigued, dizzy, the sweats. We are having a huge storm here (Colorado Springs) and I am in tremendous pain. I am not whining I am just asking you two if I should go to the Doctor about this brown urine thing or just let it pass as feeling horrible could just be from the snow storm. I know Brad has had it and I think I remember you just taking it easy and pushing fluids until it passed Brad (the rhabdomyolysis). I know yours is very severe Kira - I just don't know what to do about it. I am pushing fluids - water mostly. Anything else?

Prop1

04-17-2009, 01:03 PM

Lots of water, and carbs. If it doesn't lighten up by tomorrow, get to the ER.

Kira

04-17-2009, 08:48 PM

You need to get your CK checked and get IV fluids started as soon as possible. Not tomorrow, now. The risk of kidney damage is greatly increased if you wait. The whole point is to get you peeing 200-300 mL per HOUR... which is way more than you can do with oral fluids. Normally, for rhabdo, they do normal saline... but my mito doc has them do fluids with glucose instead (D5 or D10 in saline). Seriously... you need to deal with rhabdo early. BUT even if it has been a day or so, still very much worth getting it checked out because the IV fluids still help a lot. ER. Now. Seriously.

Kira

04-17-2009, 09:07 PM

Just wanted to add a little. So they will ask you why you are there... if you just say "muscle pain and dark pee" they will blow you off and might not even check your CK. They HAVE TO check your CK, MAKE them before you leave. It works much better for me if I say something to the effect of "I have a mitochondrial myopathy, which is a genetic disease. I get episodes of rhabdomyolysis, which can be life-threatening, can cause kidney failure if it isn't treated quickly. I've had a lot of hospitalizations for this already. I'm not here to get the pain treated because I have pain meds at home. I'm just here to get labs and fluids so hopefully I won't get kidney failure." They listen to that approach a LOT more than just describing symptoms, because usually they hear "muscle pain" and don't even listen to the rest because they just think you're being whiny.

Also... just wanted to emphasize again how important it is to deal with it NOW. But enough nagging... you know what you need to do... Hope it's nothing and that you feel better soon.

Clashboy

04-19-2009, 11:40 PM

Dear Kira and Brad,

I am over the worst of the Rhabdo. Thanks Kira for the CK advice, only the ER can do that test and get the turn around quick (as you well know and I learned). That was one horrible experience. I don't see how you can stand that Rhado stuff Kira. I now count myself blessed to have got through it. I have been resting at home. I believe I got it from exerting myself carrying a couple of packed boxes to my garage. Now I am scared to do anything.

Kira

04-20-2009, 11:44 AM

Yeah, rhabdo definitely sucks. The way I "stand" it is that I get admitted and while they are giving me a bunch of IV fluids they are also giving me a pretty high dose morphine PCA. But I always feel like crap for a while afterwards and it is definitely the most painful thing I have ever experienced, way worse than post-op pain when I had shoulder surgery.

Did you go to the ER or just wait it out at home? Even now, I would get labs from your PCP to make sure kidneys and electrolytes are OK, if they haven't checked that stuff yet. Usually within a week or so of when I am discharged, I go see my PCP to make sure labs are staying okay.

I don't know if it is just me, but I get really moody and edgy when I am recovering from a mito flare. And it is expected, for me, for my muscle pain to be worse than normal for a bit as I am recovering (days/weeks). That stuff is not part of a "new" baseline, and I've learned that I just have to wait it out.

About feeling scared to do anything... I have definitely been there because some of my mito flares/rhabdos have been triggered by seemingly minor stuff, and sometimes we can't find anything at all that triggered it. And, now that my life is more limited because I am on disability and by my disease in general, I do less and that seems to correlate with fewer attacks overall (though lately I've been doing NOTHING and still keep getting attacks). BUT I have also realized that there are things I can do to make it safer to do active things. I have to pay attention to all of the other triggers, like hydration and nutrition and hot/cold weather and how I'm feeling that day in general. It does help to make sure that I've eaten something before I do something exertional, and that I take care of all of the other triggers, too. Within reason, of course... I am never going to be able to go running or carry laundry baskets up & down the stairs or paint the ceilling. But I can sometimes go for a walk or sort the laundry or go to the store & pick out the paint for someone else to paint the ceiling. So not a matter of not being able to do anything ever again... just learning your body's limits and respecting them, I guess.

With a lot of my flares, I have initially blamed them on some small amount of exertion that I would have thought I could normally do. But then when I really look back I see that the exertion was just the proverbial "straw that broke the camel's back" and that other things played a role, too... like hydration, vomiting, fasting/eating, temperature, coming down with an infection, doing too much the day before, or whatever. A lot of the time it is more than one thing that caused it. So maybe on a good day when none of the other triggers is present, it wouldn't be a problem to do whatever exertional thing "caused" the rhabdo... but on that day, things came together just right and added together to stress out the mitochondria enough to trigger rhabdo. And then of course there are the rhabdos where I never figure out what happened.

I hate hate hate rhabdo and am sorry you had to go through it.

Clashboy

04-20-2009, 12:04 PM

Dear Kira,
We had a huge snow storm here while I was going through it and I spoke with my practice on Saturday and they referred me over to the hospital. I hope I never have to go through that again or at least for a very long time. I feel much better today. The storm is gone and it is very warm here. I am pushing fluids and things seem to be much better. The pain is way down, that was the worst part of it + the nausea. I really really appreciate your advice. I know I have had at least one episode of it before but never knew what it was. This was far more severe and I really thank you for telling me what to do and what to ask for. You saved me from damage to my kidneys and for that, I am truly appreciative. I am so very sorry you have to go through Rhabdo as much as you do. You are a strong person and your knowledge is an asset to us all. Thank you again. God Bless you.

Prop1

04-20-2009, 12:31 PM

Glad to hear you survived another "event". You need to better obey the signs when your body is telling you- "NO!" ;)

Prop1

04-20-2009, 01:54 PM

I got my NADH today. Here's something interesting that was on the back of the package, "NADH is a form of B3". B3 is niacin. What's really interesting is that since starting the niacin, my energy level has been in the dumps. It will be interesting to see if the NADH counteracts the niacin effect.:o

Clashboy

04-20-2009, 11:16 PM

Prop1

04-20-2009, 11:30 PM

Brad
That is odd. My NADH does not say B3. Maybe you should not take it. Maybe you should just send in back. You would not want to go back in a flareup and I would feel really guilty if that happened.
Here is one site to buy from
http://www.nadh.com/site7/ESprodct.htm#Top

That's the same one I'm taking, CO-E1. I'm going to try it for a week or so. I'm not experiencing any kind of flareup. Just low energy.

Clashboy

05-07-2009, 09:56 AM

Hey Brad,
How's it going with the NADH?

Prop1

05-07-2009, 03:31 PM

Hey Brad,
How's it going with the NADH?

Can't say it's really helping. Can't say it's really hurting. I may have lost some stamina from it, but it could also be the warming weather. If I don't feel a major improvement by the end of the month, I'm going to stop taking it.

riverdog

05-07-2009, 05:56 PM

Clashboy

05-07-2009, 07:15 PM

Riverdog,

The Co-Q10 make me feel horrible. I believe it is ditto for Brad; however, he can answer on that. I keep on wanting to try it again but man, it makes me vomit and I have no energy at all. I just "do" the Carnitine, B2 and NADH.

Clashboy

05-07-2009, 07:20 PM

Riverdog,

Also, I'm sorry about what you have gone through. I think we have all been in your shoes in terms of $$ on Docs and diminishing capacity. I just got my prescription for a wheel chair; but, you have to remember research is vastly expanding in this area. At least that's what my neuro doc told me yesterday.

Prop1

05-07-2009, 08:48 PM

I have not chimed in for a while and have been reading along, I must say I am a little shy at getting to involved on this forum as you guys know so much about your type of Myto, and I really know nothing, other than I have it. I have been doctoring for 6 years and the only advise I have gotten from my doctors is to try CoQ10. I have literally gone from climbing stairs with no problem, to pulling myself up the stairs one leg at a time using a hand railing. Forget about walking up a hill or down most hills. My life savings has been diminished over the last six years on Biopsy, blood work and tests. I feel like I have learned more from Brad and Kara on this site. I still work a little just to barely make ends meet and think it is time to file for disability. Which is a tough thing for me to have to do for some reason? maybe its finally admitting there is no way I can do this on my own. I'm really lost.

Riverdog,

The Co-Q10 make me feel horrible. I believe it is ditto for Brad; however, he can answer on that. I keep on wanting to try it again but man, it makes me vomit and I have no energy at all. I just "do" the Carnitine, B2 and NADH.

Riverdog,

Also, I'm sorry about what you have gone through. I think we have all been in your shoes in terms of $$ on Docs and diminishing capacity. I just got my prescription for a wheel chair; but, you have to remember research is vastly expanding in this area. At least that's what my neuro doc told me yesterday.

Knowledge is power, Riverdog. If I hadn't taken the time to research what was going on with me, I'd still be wondering if I was nuts. CoQ10 made a mess out of me when I took it. Most of the supplements I've tried did little if anything, but CoQ10 had a very negative impact. I know how hard it is to admit you can't do what you used to do. I still have this problem where every time I'm feeling exceptionally good, I do more things than I should, and then pay for it. I was forced into going on disability by a management that had very little compassion for my health issue. I guess that made it a little easier. My type of career made it impossible to be hired by another employer because of my health issues. While I was fighting an insurance company for my short term disability, I burned through what was left of my 401K money after the Dotcom bubble took most of it. I think the only reason they finally gave me my short term disability was because my SSDI came in, in just 30 days. As bad you feel right now, Riverdog, when you no longer have the stress, and the need to produce to make an employer happy, you'll immediately start feeling better. Being able to do things when you can, and doing it at a pace that doesn't mess you up, is the only way for people like us to cope and live a reasonably normal life.

Kira

05-08-2009, 07:29 AM

CoQ10 doesn't really make me feel any better or any worse. My mito doc (metabolic genetics) still wants me to stay on it because it is one of those meds that can help delay progression even if it doesn't make you feel better from day to day. That said, I know some mito folks who feel noticeably better on CoQ10. One of my online friends with severe multiorgan system mito says that her leg pain (muscles) is much better on it, and her energy level too. My mom notices improved energy levels on CoQ10... though she doesn't have full-blown mito, she does have the same mtDNA mutation as I do and she also has some funky labs (CK, acidosis, myoglobinuria) and mild/moderate symptoms (muscle pain & weakness, peripheral neuropathy, fatigue, nausea/vomiting). Another person I've met online notices a big big difference in her daughter's migraines, mood/mental status, and overall functioning.

IMHO, the variation in people's responses to CoQ10 is just another example of how mito is weird.

They can test your CoQ10 levels in muscle, fibroblasts (skin biopsy), and/or leukocytes (white blood cells). If your CoQ10 is low, then maybe you'll notice more of a difference. However, my CoQ10 (unsupplemented) was fine and they still want me on big doses of it due to the severity of my disease and the location of my specific mitochondrial defect (Complex I Deficiency, which is a respiratory chain defect). CoQ10 is a molecule that directly participates in bringing electrons from Complex I to Complex III, and from Complex II to Complex III... so having lots of it around can sometimes help improve functioning. Also, CoQ10 is a very strong antioxidant, which means that it can help protect mitochondria against further damage.

The supplement I DO feel better on is levocarnitine (aka L-carnitine or Carnitor). It gives me noticable improvement in energy levels, overall muscle pain & fatiguability, nausea, and frequency of cyclic vomiting episodes. It DID give me GI side effects (nausea, diarrhea) when I first started taking it, but my mito docs wanted me on it pretty badly so we just gradually increased the dose, had me take it with food, and eventually switched from tablets to liquid (liquid is easier for me to tolerate, for some reason). I am on a really massive dose of levocarnitine... 4000 mg per day, divided into 4 doses. I would not take such a huge dose without talking to your doctor.

The carnitine helps for a couple of reasons. First, for me, testing on my muscle, blood, fibroblasts (from skin biopsy), etc showed a mild carnitine deficiency secondary to my mito... plus it showed elevations of SOME of the acylcarnitines. Acylcarnitines have to do with how you are metabolizing fatty acids of different lengths & types... in my case, it showed fatty acid oxidation problems secondary to my mito. Taking the carnitine is supposed to help with the fatty oxidation issues in two ways. First, it transports fatty acids into the mitochondria to be metabolized. Second, it transports metabolic byproducts out of the mitochondria (leftover stuff that isn't metabolized like it should be due to broken metabolic steps from the mito) so you can pee them out. If you just let those metabolic byproducts build up, they can make you feel pretty crappy due to what is called autointoxication. So getting rid of them helps.

Other stuff that is supposed to help with mito includes various antioxidants (vit C, vit E, alpha lipoic acid, selenium, etc)... various B vitamins (especially B2, which is riboflavin)... creatine (provides alternate source of fuel for muscles)... etc. This all varies quite a bit from patient to patient, though, because there are a LOT of different metabolic defects/broken enzymes that can cause "mito." Mito is NOT one disease, it is a bunch of different diseases... so what works for me might not work for you, and so on, based on us having different broken metabolic steps. That is why it is SO IMPORTANT to have a specialist that really understands mito (metabolic genetics and/or some neurologists/neuromuscular foks).

Kira

05-08-2009, 07:37 AM

Wanted to comment on the disability stuff, too.

I fought it hard for a couple of years, and in retrospect I was just making myself sick. I was in the hospital SO MUCH for rhabdomyolysis and mito flares when I was still trying to do work & grad school & drive back and forth to take care of my mom & so on. When I finally threw in the towel and went on disability, the frequency of life-threatening flares went WAAAAAYYYYY down... only one hospitalization in the first 14 mos on disability, though things have been worse again lately due to some weird flare that won't stop.

The biggest problem with disability, for me, is quality of life. At first it was kind of nice to not have to go to work and be able to rest as much as I needed to. Now, more and more, it is really affecting me that I don't see people very often and rarely get out of the house. So it is definitely a tradeoff. Plus, there are very significant financial considerations (obviously).

Re: wheelchairs/scooters... I don't have one. I can still walk some, though I have NO stamina and my activities are really limited because I can't tolerate the exertion required to go out and do stuff. In that regard I think a wheelchair or scooter would really help open my world back up. I have a 4-wheeled walker with a seat (rollator... this one: http://www.amazon.com/NOVA-Cruiser-Deluxe-4202-Walker/dp/images/B0027A8LVQ/ref=dp_colorn_6?ie=UTF8&s=hpc&img=0&color%5Fname=7 (http://www.amazon.com/NOVA-Cruiser-Deluxe-4202-Walker/dp/images/B0027A8LVQ/ref=dp_colorn_6?ie=UTF8&s=hpc&img=0&color%5Fname=7) ). I really need to talk to my docs and/or PT about a wheelchair or scooter but just haven't been able to do it yet (mentally). Plus, I have a practical issue... my building is totally not accessible, with steps at each entrance... so I would have to either leave the WC/scooter in my car or leave it in my apartment or somehow drag it up & down the steps to get in & out of the building. I am moving in August, though, and one of my criteria for the new apt is that it will be reasonably accessible.

Clashboy

05-08-2009, 08:16 PM

Riverdog,

As with Brad and Kira, I have spent so much money over the last 17 years to find out what was wrong with me. Just within the last 4 years I have spent $58,000 on out of pocket non-reimbursed medical expenses, including many different types of medications, many different doctors and all kinds of tests. I don't seem to think the vitamins are helping much; but, everyone is different. I, like Kira, take the Carnitine and after a rough start, I have finally acclimated to its side effects. I don't think I have been on it long enough to notice the positive effects. The only supplement that I have found that helps me is the NADH; however, it's not doing much for Brad. Proof that this disease is so weird and so individualized.
In terms of a final firm diagnosis, three things were the turning point for me: 1) a lumbar punch (aka spinal tap); 2) a muscle biopsy; and, 3) finding the correct Doctor who put all the diagnostic information together. Finding a knowledgeable neuromuscular specialist that takes the time to listen to you and all of your suffering is so critical. Brad told me to check with my local MDA in order to find a competent Doctor that comprehends all the "faces" of Mitochondrial Disease. Also, finding a Physiatrist that can help you with pain (if that is an issue) is helpful to improving the quality of life.
Also, regarding Disability, if you are working now, think about whether it may be time for you to go out on permanent disability. I don't know if you mentioned if you were working or not. Like Kira, disability at first is novel but you have to keep yourself occupied or you go nuts. The nice thing about going out on disability is you don't have to worry about getting fired by people who have no empathy nor comprehension of why you tire so easily, miss work, or are zoned out.
Next, with regard to a wheelchair, I only got mine to use on the days where I could not walk well or go places with my family. I don't have my chair yet, it is being ordered; however, I still plan on just using my cane most of the time.
Finally, like Brad, heat wilts me and cold makes me feel rough. I am extremely affected pain-wise by weather fronts.
Please hang in there and ask as many questions as you need to. I don't think any question is dumb. Without Kira and Brad, I never would have learned so much, so quickly - and, I'm sure I asked some dumb questions. Remember, it is a dumbfounding disorder. I hope you may be finding some similarities with your symptoms and if not, just ask us and I'm sure one us has it and can speak to how they manage it.
Take Care,

riverdog

05-09-2009, 12:46 AM

Thank you all soooo much for the replies, I am very appreciative of the kind words and suggestions, it helps more than I can say.

I have tried just about all of the supplements mentioned above in various doses and cycles for about a year and a half. The results unfortunately were the same, either nothing or as in the case of the CoQ10 that was a terrible experience no matter what dose I tried, the main one being I got the shakes and it kept me up all but 3 or 4 hours a night, so I just wont try it again. I have never heard of NADH before so I will do some reading on that.

As far as my doctors, I am seeing the "so called best genetics doctor" at least in WA. the problem is he has had no suggestions other than C0Q10, and of course the Biopsy, and blood work....lots of blood work. Also I call and e-mail after not hearing anything for a month or so and I am lucky if I get a return phone call at all, and if I do its about a month later when I am at work. Very frustrating. Actually that is my biggest complaint you will hear from me, haha.

I am just curious what your thoughts are or what you have read or been told as far as treatment, research or trials to helping treat this? I have been told by one doctor "go out and enjoy your life as you are while you can still walk" and "your muscles are wasted and they will never get any stronger". That's all I have for now, but thanks again for all of your support. It just made my day a lot better. One more question! My pain level, how did I forget this one? most days are ok now that I really take it easy (thanks Brad) I know my limits but sometimes over do it or simply have pain for no reason, Mainly between shoulder blades and allways lower back and hips. Currently I only take Aleve to take some of the pain away but am getting to the level of needing something better? The doctor said he would really like to see me not take anything because it might give me "false" feelings and I might injure myself? I thought that was kind of comical since I can barely climb a flight of stairs.

Prop1

05-09-2009, 08:23 AM

One more question! My pain level, how did I forget this one? most days are ok now that I really take it easy (thanks Brad) I know my limits but sometimes over do it or simply have pain for no reason, Mainly between shoulder blades and always lower back and hips. Currently I only take Aleve to take some of the pain away but am getting to the level of needing something better? The doctor said he would really like to see me not take anything because it might give me "false" feelings and I might injure myself? I thought that was kind of comical since I can barely climb a flight of stairs.

That is exactly why I limit my pain meds. Pain is the body telling you something is wrong, or that you have exceeded your limits. If the meds make you so numb that you can't feel any pain, you are inclined to exceed your limits and hurt yourself worse. Sure, I'd love to live a day without pain, but at what cost? The pains you feel are in the same areas I have it. I get relief from the shoulder pain by either laying down, or reclining in my recliner to take the weight off those muscles. My hip muscles (what's left) get stiff if I'm inactive too long, or am on my feet too long. So it's a balancing act to minimize the pain. My lower back muscle pain is from being in an upright position too long, so I try to avoid being upright for extended periods. It all comes down to finding that sweet spot in your daily living.

Kira

05-09-2009, 07:33 PM

I don't think I could take it without pain meds. They definitely don't take away all the pain and I can definitely still tell when I am overdoing it. I see a pain specialist and use a combination of fentanyl patches for my long-acting med and then oxycodone IR as needed for breakthrough pain or rhabdomyolysis/flares. When I have rhabdomyolysis I am hospitalized and so I am able to use IV pain meds the first few days for that... usually a morphine PCA, then taper to oral meds so when I go home I am just on my usual fentanyl patch and oral oxycodone as needed. I also use ibuprofen as needed but have to be careful with the NSAIDs due to side effects with long-term use and also risk to kidney function if I use it during rhabdo. I go to physical therapy, too, and that's helping with the muscle symptoms. You have to be really careful with PT, though, so that you don't overdo it. The most helpful thing we've done in PT is a lot of work where I just lay there and my PT works on loosening up the scarred, calcified, tight tissues where I get repeated rhabdo episodes. It has made a big difference.

As far as what your doctor can do about this... it sounds like he's telling you the same things we've all heard... that supplements and limiting activity are pretty much all there is available for treatment, and that you need a correctly done muscle biopsy for accurate diagnosis. Everything else we do to treat my mito is about treating the effects of it and screening for complications. I have autonomic dysfunction, so we treat some of the effects of that like tachycardia and irregular BP. I vomit a lot and so we are trying to manage that. And so on and so on. I DO think they could be doing a lot more for your pain, but the genetics guy isn't going to do it and your PCP probably isn't going to do it. In terms of my pain management, the best thing to happen with that was when I got fed up with my PCP telling me he couldn't do anything about it and I asked for a referral to the pain clinic. The pain docs won't automatically put you on opiates, and if you don't want to go that route you just have to tell them you don't want to take those meds. But they are the experts with managing pain, and it has made a huge difference in my quality of life.

riverdog

05-10-2009, 03:11 PM

Thanks, I really feel I have waited long enough without having something for my flare ups. I would like to have something stronger for a back up on my bad days, maybe once a month. I don't need to tell you all the pain involved on our "bad days", ibuprofen just wont do it on those days.

I am sad that there has not been a breakthrough test or trial with some hope for getting stronger. As you all can tell I am have gotten so weak in the last year and a half that I am searching for any and all answers with hope. Clashboy mentioned in a post of his doctors saying there are advancements coming in finding cures or medications that might help?

I try staying positive and make the best out of life... By the way I am 38 and noticed my condition at around 28 or so, I was as active as a guy could be before noticing pain and weakness. Camping and hiking were a huge part of my life, and still are. I just do not get to do it all that much. I have a great group of friends that are willing to help me with things I just cant do anymore and still have trouble going to public places or party's with a lot of people for fear I get bumped and fall and injure myself, its happened before. that is the hardest part for me, even with a cane I am not very sure footed at all anymore and always try and catch myself if I stumble and end up hurting myself worse. So I miss out on a fair amount of stuff due to just being scared I guess? Thought I would tell you a little about me. Thanks again.

Clashboy

05-13-2009, 12:18 PM

Hi Riverdog,
Sorry I did not answer earlier, I am moving to North Carolina and we are packing and such. Hope you understand.
First, on the pain medications, I could not function at all unless I had them and even then, I still have pain. I wish I could be as strong as Brad; but, I just can't tolerate the pain. I am getting the wheel chair so I can see if it can keep me from overdoing it and reduce my pain. Right now, I am on a similar protocol as is Kira; however, I did not tolerate the Fetanyl patches, so I am on Methadone as the long acting medication and Oxycodone for the breakthrough pain medication. I combine the Oxycodone with Ibuprofen (800 mgs) So, the whole pain med picture for me is 20 mgs of Methadone per day (10 morning; 10 evening) and 30 mgs of Oxycodone up to 3x per day for breakthrough pain with an 800 Ibuprofen. I have a Physiatrist (pain doctor) who I see once per month for these medications. These are cheap medications and very effective but I still have a low level of pain just as Kira explained. You may want to find a Physiatrist (that's kind of the old term) or Rehabilitation Doctor or pain Clinic in your area that can help with managing pain. Mine also does trigger point injections which are just lidocaine and a steroid injected into trigger points of the back and legs/hips - they don't hurt. Then, you have the area with the injections massaged (deep tissue) - that does hurt. These trigger point injections help me quite a bit. The narcotics cause horrible constipation that you have to keep on top of or boy is it miserable. I use Miralax everyday which is over the counter and kind of expensive but if combined with a senna laxative it does the trick.
About the trials, I am on the younger end of the stick like you (but not as young as Kira). My Neuromuscular Specialist is a former Mayo Doc who retired to Pueblo, Colorado and set up a small practice in the hospital. When I last saw him, last week, I was a bit down because I had a bad episode of Rhabdo and was feeling crappy. He told me that advances in the area of Mitochondrial Diseases are really starting to roll in. He specifically was speaking of mitochondrial stem cell transplantation which he said is having huge successes with dogs and some other animals right now. He was trying to give me hope that within ten years, there will probably be a viable stem cell protocol for humans for my type of Mitochondrial Disease. His point was that even though I am progressing downward a bit and now need a wheel chair on a semi-ambulatory basis, I am still young enough that within the near future there will be hope for improving or stabilizing my condition.
Also about medications, one aspect of this disease is, it can cause a host of secondary conditions. I think you have picked up on that from Brad and Kira. We all have dysautonomia. I have orthostatic hypotension, the sweats, and trouble breathing - like asthma. Kira and Brad have slightly different symptoms of dysautomnia, just as you probably do. There are medications that can really help with these and make you feel much better. I don't remember if I read about any of your secondary conditions. If you have not thought a whole lot about them, please do. Don't suffer, just about anything you are experiencing in terms of symptoms could be a secondary condition caused by the Mitochondrial Disease. Even my Monoclonal Gammopathy, a crappy disorder unto itself, is believed to be caused by malfunctioning mitochondria. I could not believe it when the Doc told me that. So, I would encourage you to think about all the other symptoms you are experiencing besides the shoulder blades/back and hip issues.
Lastly, (I am so long winded) we have all gone through the Doctor Mill. I have probably seen at least 25 and that is not many in comparison to other folks.
I just don't like the sound of your Doctor right now. Especially his lack of responsiveness to your inquiries. I wish you could see my doctor or Kira's doctor. I would think my Doctor would get you to someone he knows up there in Washington. He knows a bunch of Doctors, is a former researcher and has hooked me up with a Doctor he trusts when I move to NC. He just told me, "here is the guy you need to see." Let me know if you want my current docs name and number. Also, Brad's suggestion to me about contacting the local MDA really helped in finding Docs who care about people that suffer from Mitochondrial Disease. I'll just say it, I think you need to see another Doctor that is recommended by the MDA and I would go for a neuromuscular specialist. And, I would find a pain clinic.
Lastly, Lastly, I believe Kira is correct when she mentioned about not working. I pushed myself in my job way too hard which I think has contributed to me being sicker than if I went out on disability years ago. I regret not going out sooner. I don't know what your job is or your financial situation but if you can swing not working a full time job, you are going to feel better. I do.
I feel for you loss of not being able to go to parties or do what you used to do. But there is hope. When I first got sick in my early 20's, I was a member of a very successful southern cal punk band who continue to this day. I could not tour anymore and had to leave and take a regular job. I was depressed over it for years, and angry too. But since going out on disability, I am able to spend more time on music and I can play better now. I actually believe now that I will be able to play again in a local band as long as I don't over do it and am patient with my rest. You too will be able to resume your life, camp, go out to a party now and then. The key is to know when to bow out of full time work and not push so hard - get off the stress wagon. Don't be stupid like I was and keep on pushing. It is not worth it. I truly hope you can do that $ wise.

riverdog

05-13-2009, 10:01 PM

WOW, I have said it before, and I will say it again! in the last 5 pages of this post I have learned more than I can believe. I am getting my taxes done right now (late) and will see how much $ I can draw monthly on disability. I might be able to make something work. I have sweat issues that I just contributed to nerves and stress, I had no idea it was a symptom? I have searched through the MD web site and the doctors they recommend are the ones I have seen, so I am still at a loss for what to do about that? My doctor called me two days ago "44" days after leaving my last message... I still have not called him back. So much to type , ask and questions running through my mind right now. I just have to say thanks again to all.

Clashboy

05-14-2009, 11:06 AM

Riverdog,
Just let me know if you want the name of my neuromuscular specialist in Pueblo, CO. As I said, I know he could get you in contact with a responsive Doctor in your area. He is passionate about Mitochondrial Disease. If not, remember about contacting your area's Muscular Dystrophy Association (MDA) office. They can even help with getting your muscle biopsy done. At least the one in Denver was willing for me, so, I assume the office near you would be able to help. Brad knows much on the MDA assistance and turned me on to getting in touch with them.:o

Prop1

05-14-2009, 02:30 PM

If you're not happy with the doctor choices at your local MDA, you can have the MDA arrange for a consultation at another MDA clinic. That's what I did. I wound up at the MDA clinic at The Barrow Neurological Institute in Phoenix. It's just too bad that the hospital it was connected to had an incompetent surgeon that was too arrogant to follow the directions of my doctors.

On another note, the past three days I have been suffering from what I call "Horse Butt". I had to take my elderly father to the Memory Clinic at the VA the other day. The walk was too much for me, and now every time I walk, it feels like a horse is kicking me in the butt.

riverdog

05-14-2009, 02:55 PM

Thanks for the advise once again. Where I am at with my doctors is, I show up for a consultation for either blood work or my biopsy results and it is like I am sitting in a room with two doctors and always an intern. The doctors seem to give the intern more time than me, explaining things and answering questions. I have to interrupt them with MY questions just so I feel I can leave there knowing something. When I ask them a question they look at each other and never answer my question, just simply write it down and say "we will check into that". I have lost all faith in them. I am going to contact my MDA clinic today and ask for advise. One side note also, they have managed to "misplace" two blood tests and one set of authorization paperwork! Which I had to pay for and re-do. All this adds up on my mind and really stresses me out, Each "meeting" I have with the doctors casts $1200.00 + dollars which I have to pay 20% of and am yet to walk away with any decent advise other than try CoQ10, and I have told you all what that did to me. I am what I am and I am not complaining, as I don't have a wheelchair, vomiting cant say I have had a flair up so bad that I had to stay in bed for a whole day. It's just I see myself getting worse, that's why I love this forum. Everyone here has taught me so much and I am appreciative beyond words. Its almost like I am getting prepared and learning from the pros. The first thing I learned here is from Brad and that is over doing it, not to push your body. I think it was something like healthy people wake up with a fully charged battery bank and we wake up with a 10% charge, so conserve your batteries. It has stuck with me and works!. If I have no luck I will be asking for doctors names and numbers if that is OK?

Thanks again..

Prop1

05-14-2009, 05:44 PM

The one thing that is nice with the MDA, is that you have no out of pocket expenses. What your insurance doesn't pay, the MDA does. You also have a network of doctors that consult on patients, and as I mentioned, you can go to another clinic that has doctors that are better versed in your condition. Your next step should be the MDA.

Clashboy

05-15-2009, 10:49 AM

Amen to Brad,
Riverdog, you are smart to call now. You may never have to spend a day in bed.

To Brad - I am soon to move so we won't be "neighbors" anymore. :(
I am a bit concerned about the heat in NC; however, at least I'll be out of this cold weather which for me is worse.
I went and got measured for my new chair - I did go with a manual as opposed to the scooter; but, it is a $3000 ultralite. My upper body strength is pretty good so I wanted to go with the manual given I will use it when I need it. I think this will be a good means to reduce my pain and my need for pain meds. So, thanks for your encouragement on this one.

Prop1

05-15-2009, 01:09 PM

Clashboy

05-16-2009, 11:12 AM

Brad,
Yes, research triangle and Duke University have great Docs; however, my neuromuscular specialist referred me to a Doc in Winston-Salem, I believe he is affiliated with Wake Forest University.
That heat down in Supply, NC is hot hot hot. Plus, they get many hurricanes in Brunswick county. I lived in NC for 20 years prior to coming to CO. You have to convince your wife that the NC mountains are best for your health. She would be much closer to relatives than she is now and you would love the Blue Ridge mountains. It never gets super hot up there and the climate in the winter is mild. I love NC and am so happy to be moving back to the south. The people here in Colorado Springs are kind of mean and an unhappy looking lot. But, NM is a great state, beautiful towns and the Spanish influence is so cool. I just got finished reading a great book called "The Haunted Ghost Towns of New Mexico." It had nothing in it about hauntings but explored the history of many of the ghost towns of NM. Very enjoyable and made me wish I had more time here so I could go down to NM and go to some of them. Anyway, I would recommend the book if you are interested in that sort of history.