I'm upset...

[illusion129]

OK, so I know I haven't posted in ages, but someone brought something up to me tonight that has been REALLY bothering me.

Tonight, one of my friends who I chat with quite regulary, who has no clue about my medical history aside from the symptoms I tell them I experience, suggested I may have Munchausen's or be a plain ol' hypochondriac.

Wow, what a blow. To have someone tell me that I either, a: inflict illness upon myself or 'know' that I'm making up symptoms, etc., or b: that I'm tied entirely to the way my body feels and that I make too big a deal out of little things (symptoms) that come and go.

Well, I'm almost 100% confident that I do not inflict things that I go through. I don't eat paint to make myself nauseous, I don't throw myself down a flight of stairs to hurt myself, nor do I take illicit substances to cause myself cognitive despair.

Sure, I know every one of us has made a little symptom out to be a big thing before. Who hasn't? But when I say I'm in pain, I mean 5+ pain, not stubbing my toe (hell, I don't even feel that kind of pain anymore). When I mention nausea, it's to the point of throwing up (or out the other end, eww.)

I know that it's hard for people to understand our complaints when they suffer from nothing similar that we do, yet it's very hard to be literally "put down" because of how I feel.

Know this: the person that brought this up is a good friend who's also a RN. He doesn't want to see me hurting anymore than I already do, yet he's convinced that my life is wasting away.

For you who don't know me, or remember for that matter: I'm 21, been dealing with "my symptoms" for about 7 years now. It all started with chronic pain in my legs and from there the pain has spread throughout my legs and is now in my trunk. I also deal with a multitude of other symptoms; memory loss/cognitive impairment, nausea, blurry vision, heat INtolerance (if it's above 70 degrees, everything starts going fuzzy vision wise and I become terribly weak). And no, it's not MS, that's been ruled out. I could go on and on for at least a page, but who wants to hear someone else complain?

So far, since a "larger" problem such as MS or Rheumatoid has not been found, I'm dealing with a lot of various DXs. RLS, Fibromyalgia (although I do NOT have the pressure points, mine is considered a "joint" form of Fibro), Chronic Fatigue Syndrome, Chronic Pain Syndrome, IBS...the list goes on. I also have 4 levels in my neck that are causing spinal stenosis as well as 2-3 levels in my lumbar area that are degenerating (the discs). That was confirmed more than a year ago. More damage? Probably, considering it's degenerative...maybe that's why my pain levels have spiked in the last 6 months.

First off - I'm only 21! Why is all this happening to me?! I mean, seriously, I'm supposed to be out partying, going to school full time, working at least part time...certainly not "stuck" at home only leaving when there is a doctor's appointment or a trip to the pharmacy.

Am I crazy? Maybe. I just wish that I knew what was really wrong with me, that's all. There HAS TO BE an explanation of why someone so young would have a body in the shape of a senior. Mind you, I've never even been in a minor accident that would cause such damage to my spine...so everyone, including 10-15 doctors, are clueless. And I'm left upset. So what more is there that can be done aside from popping pills the rest of my life all so that I'm able to 'just' sit at home all day doing nothing?

I'm at my breaking point...and I could use some words of wisdom about now. Do any of you ever wonder if perhaps all of this is just some fictitious game our mind plays on us (making us think we're ill)? Or is it that there are just people out there who don't understand? I'm so lost right now it's not even funny.

Just so you know - I don't know what I'm expecting to get out of this post. Basically I just needed someone to hear me out and give me some emotional support. I'll check back tomorrow for any replies.

Hope all of you had a great night, were able to sleep well and be pain-free, if only for a short while.

[BrokenBladder]

Russell,

It's good to see you posting again, but I'm sorry that it's under these conditions.

My first thoughts when reading your post is that you have a friend who is having a hard time accepting that you're in pain. Just because he's in the medical field dosen't mean he understands.

In my experience it's hard for alot of people to accept us as we are. They want to fix us and that's just not possible. Heck even our doctors can't fix us.

I realize how upseting it is to feel like someone dosen't believe in your pain. If I were you I would sit down and have a good talk with him.

Express to him that you would never wish this on yourself and all that you want is a normal life. If he still dosen't come around then it might be in your best interest to sever the friendship.

Life with CP is very difficult and especially at your age. Before I became ill I had alot of friends but now I have a handful. Most people just can't accept something that they know nothing about.

I wish you well with this situation. Be patient but stand up for yourself. Cp is no laughing matter and we need people around us that support us.

[illusion129]

Lisa, I just don't get some people! I mean, I felt sort of "hurt" when he mentioned Munchausen's. I mean, seriously, I'm so not that type of person. I HATE being sick, and when I say sick, I mean with any kind of illness. CP and the other things I deal with have literally become a daily part of my life so I don't necessarily consider them "illnesses" anymore, more like daily problems. LoL. Anything to keep me from thinking about my health even more!

But I just wanted to say "thank you" for replying and with such encouraging words. I just don't know why others have to look at CP patients and think it's all in their head...or WORSE, such as inflicting the pain and suffering upon themselves.

I think the biggest things against me in another person's mind is, 1: my age; and 2: no definitive DX as to why my symptoms occur. How many 20-something year old people deal with CP? I think it's an interesting question. I know Erin would fall into the category with me...pretty sure Kira would too.

Oh well. I know that this friend was just showing concern because he wants me to live life in a fuller way, it's just my body is not capable of doing so. I wish it were different, I know all of us do, but that's just the way it has to be.

[JAVISI]

Russel,
If this person is an RN, he needs to go back to school. I to am an RN and was taught never to doubt anothers pain. We can not feel it or see it but the person that is having the pain knows their body more than any one else.

It is bad enough when a Doctor questions our valitidity but when it is a friend I can only imagine how awful that had to feel. Yes you are young and maybe they don't have a diagnosis yet but I hope it comes soon. I waited 3 years for my diagnosis and I wanted to shove the disgnosis in the faces of the people that really questioned my illness.

I wish I had a way to lesson the pain for you. But I can tell you that I understand and hang in their. You can develop and I am sure that you have many friends here that truely understand. It hurts when anyone questions the validity of our illnesses! I would nmot wish my pain and symptoms on to anyone... well let me say maybe a few Dr's that treated me badly! (lol)

No one would want to be sick like most of us are and there are so many people that have yet to be diagnosed so you are not alone. I would tell your friend how his trying to diagnose you made you feel and by the way he has no legal right to diagnose anyone. Just a suggestion. You shouldn't have to plead your case to anyone but if this person is a friend that you don't want to lose, tell him/her.

I have lost so many friends since I became sick but have gained so many cyber ones that I am content. Here I never feel judged or badly when I need to vent or just chat. I am thankful that this site exists.

Best wishes to you and I hope you find answers soon. It does help to finally get an answer!

Dreaming Big and Reaching for the Stars! Javi:)

[Tbackpain1]

Russell,

I wish I had some words of wisdom to share. I started this Chronic pain garbage when I was 21, so I get where you're at. My life seemed a complete polar opposite to my peers and it was darn frustrating, to say the least. I just finally got to the point where I don't give a damn what my peers think...I don't talk about my illness to them anymore. If they ask, I just say I'm managing ok and leave it at that. If they make plans for an event that I want to go to, I will show up and leave when I need to, instead of staying to the point of becoming physically and visibly ill because I need to be home laying down, instead of at a bar or a club.

I still get times when I'm really down. I'm just coming out of a "funk" regarding my career. Its highly frustrating to have the knowledge inside my head and not be able to use it because of my crappy body. Now I just have to figure out where to go from here, because I refuse to sit here and do nothing, and I'm not going to compromise and do something that doesn't fulfill me. I'm setting more realistic goals for myself, so that I don't keep "failing" at things...its depressing, and not healthy to keep beating myself up mentally for things that I can't control, so I'm just going to stop doing it.

Its a process, and its far from easy, and I don't think it ever really ends. We're constantly evolving into our "new" selves, and always working towards some new goal. I'm constantly amazed at the new heights of stupidity that I encounter among my friends...those in healthcare are often worse than those who are not. You don't need that kind of aggrivation in your life...confront him and based on his answers, find out if he genuinely believes you or not. I don't need people in my life second guessing my doctors...I've already got enough of them. I ask that my friends support me, but leave the medical to my chosen physicans/practicioners.

Take care.

Theresa

[Diandra]

Hi Russell,
It is a sad state of affairs that in the medical community, if a cause for the illness/pain is not found then instead of saying, we have not found it yet, the answer is, it is all in your head.

Your friend does not sound like much of friend. How is this info supposed to be helpful to you? What was the benefit? It only made you upset and made you doubt yourself.

I struggled for 2 years to find an answer to my problem and went from doctor to doctor with a laundry list of symptoms, doctors had no answers, just pumping me with painkillers and sleeping pills, etc. There was no answer to my brutal migraines,stiff neck, back pain, insomnia, all over body aches, cognitive lapses etc, etc. I was told, you are under too much stress.

Well, one change to a doctor and one blood test gave me the solution. I had been bitten by a tick two years earlier and I had Lyme Disease. It just took one doc taking the right blood test. Within just weeks of antibiotics I was remarkably better. I still have alot of issues because it took so long to dx I was never able to fully get rid of it but, I no longer have migraines or seizures and the pain that was unbearable is better.

When a young person like yourself presents with list of pain symptoms with no answer, a doc must test for that but not just any blood test. You need to follow the guidelines for testing in this document. You must have a Western Blot test and you must ask to have ALL bands reported.

http://www.ilads.org/burrascano_1102.htm

Here is a document that will be helpful. Read the list of symptoms and compare yourself and read about testing. Don't get just any stupid blood test the doc wants to do because they may miss it. If I can help, let me know.

All my best,
Diandra

[debhun]

So sorry you have to start out in life this way. I have been a CP for 30 years but dismissed it. As the years went by it got worse and worse. When I hit 40 my whole body just couldn't take it any more. I went to my Dr and he did his best. Went for test after test. He gave me vicadon 1-2 every 4-6 hours did that for years. But Pain was not any better. He had to stop the vicadin and sent me to PM this past June. The best thing he ever did.
It took 11 years to get to PM cause some just don't want to believe us some times.
My family is one of them. I have a daughter that will not talk to me cause she things it is in my head. It took my mom a very long time to come across with this. But she still has days that she thinks I can do more. So yes it is very hard and it hurts to know people don't want to see us the way we really are.
Some day maybe they will come a day they can really see what we go though just to have some kind of life.
I wish you the very best. Just know WE are here for you any time you need Us.

(((((((((((HUGS))))))))))
Deb

[Sara1979]

Big Hugs. I can definitely relate. I have a sister who is big into mind over matter and constantly tells me about how her knee hurts and she just ignores it. Not realizing that yeah I can ignore knee pain that will go away in a few hours or with some Tylenol but having serious pain that takes over
your entire body and life is an entirely different thing. I really think it is almost impossible for some people to understand or be compassionate, either because of how they were raised or just strange ingrained ideas.

I also think that age plays a roll in the medical communities opinion as well as family and friends opinions. My CP started when I was around 20 and everyone tried to blow it off. Even though I had a very obvious cause. I am 28 now and I am treated completely differently. I don't know if it is because of the long medical history or just the age factor but being young and having CP is definitely an extra strike in getting care and understanding from family and friends.

[illusion129]

In general, to those of you who have replied: THANKS a million! You gave me the words that I needed to hear. Sometimes we just need to speak with like people to get our grip and find out that we're not looney-tunes. LOL. :rolleyes:

Some of you "attacked" my friend, and with just-cause. If someone had come to me with a similar problem I would have said the same things, if the case were similar. I just want you all to know that he really does care, he just doesn't understand why I'm "this way" at only 21 (he thinks there's more to my story than just bad health, even though I've never been a drug-abusive person, alcoholic, nor have I had any other psychological issues aside from depression.)

Javi - I appreciate your words about being in the healthcare field. Sometimes I know doctors/nurses must get tired of dealing with the physically/mentally ill all the time and thus they put an added burden upon some of their sickest patients, I just don't understand why some of them stoop to the level to say "it's in your HEAD" just because there is no logical explanation. As the last Neurologist I saw said (sort of), "You can spend thousands and thousands of dollars getting tests of all sorts, but when it comes down to it medical science just isn't advanced enough to determine every illness." And yes, that doctor believes I have something that hasn't been "brought into the light" yet...that or I just have a multitude of "little problems" caused by who knows what.

Di - I've had the regular Lyme Test done before but never the Western Blot. I did ask about it but for some reason my Rheumatologist didn't want to go through with it because she didn't believe I really had Lyme. Since nothing has come up since then, I may just ask her to order that specialty test and see if there is anything down that road...hell, with all the $ I've spent O-P for tests and procedures one more couldn't hurt, especially if it were the lucky answer for me! My symptoms do match some of those with Lyme, but if you really want to see my "list" of symptoms look up Multiple Sclerosis. A couple of my doctors really believed that is what I had when I first presented with all my symptoms (minus Optic Neuritis - never had that) yet when they did the testing (MRIs, Spinal Tap, etc.) everything came back clean. That's not to say it will in a few years, because often times MS takes years to detect. Who knows! I'm just glad I have people like you to chat with on here; it makes the day brighter! :)

Deb - I can't believe you made yourself wait 30 years before seeking help! That's a long time to have to deal with pain of ANY severity. I can't imagine being in pain for that long; God knows you had to have been depressed a lot of that time, especially when your biggest support group, your FAMILY, didn't realize you were truly hurting. My feelings go out for you. I've been lucky in that aspect; my family are country-people, very "old-school", and they think that most things should just be "toughed out". Luckily I found the "chronic pain patient letter" to send to them...it helped them to understand how I feel from minute-to-minute, day-to-day. There are still those who think otherwise, but SCREW 'em. If your daughter is going to be that hateful, she doesn't need to bring you down with her. I wish you all the best in that situation and I hope that your daughter wises up and sees that her mother needs her now more than ever. You should look up that letter I'm talking about, it's posted under the "useful links". It's great!

Sara - You're not kidding! The first few times I went to the doctor about the continual pain in my legs, all they did was do a few X-rays and say there was nothing wrong. You're still in pain? Well, here's some Naproxen, we can't give you anything stronger. Even though you say you're in pain we can't prove it so no medication that helps. And yes, narcotics do help my pain because not very much of it is "nerve pain" (I take Cymbalta for that and it helps a LOT on the nerve pain I do have). Age definitely plays a role, and I can tell you were in the same boat I was when you were 20. Why is it that people can't validate a younger person's feelings? It really ticks me off!
Maybe someday the medical profession will have an actual test for pain so that those of us who DO suffer can finally relax and not worry about the DEA robbing us of our doctors; that test could also rule out the druggies, thankfully! Less drug abuse = easier time for CP patients, obviously.

Well guys, thanks for all the words of wisdom and encouragement. You really did make me feel better. Not to mention I think I forogt my meds yesterday and when I don't take my anti-depressant I get really easily upset. You guys are great! I hope all of you enjoy a stress-free and pleasurable afternoon! Take it easy. - RH

[cindybear]

My daughter at a very young age started a having problems...Every doc ignored her plight,,,Said they were growing pains...Now she is 23...Is in incredible pain, Has a spine of a 80 year old,,CP all thetime, and they just DXed her with (2 years ago ) juvenile rhumatoid arthritis...But they refuse to give her pain meds for any amount of time...She can have all the injections, surgery she would like...Sad, yes, She just started a job, secretary from my husbands work,,,He is the owner, and he is gonna get her some good insurance..like everybody else has,,And get her to our pain doc...Who is very compassionate...The other pain docs she has been to, scares me,,They want to pray over her body, Nothing wrong with prayer, But there is a place for it, A docters office is for doctering in my opionin..The other 2 places she went to wanted her to only be seen by a surgeon and the other place said he would only ,,,only do injections-expensive (WHICH SHE DID AND COULDN'T WALK FOR4 DAYS AND CRIED FOR 4 ). Now she is at the end and we are hoping, that our CP doc will see her...For I have seen her suffer enough,,Bad enough , parents suffering everyday, but to watch our children,,,Terrible !!! Hugs, hun, I do hope you find A DX, it does help in alot of ways ....just knowing,,Cindy

[Jo6]

I hope I did not "attack" anyone and I don't even know why. Do you know something? I would be pissed off in Purple big time if someone said that to me!!
I also worry that I am not one of the group. I post and the thread will hit the bottom of the page like a rock!! Yes, I know I am Way older than you, but I still feel much as I did when I was younger. I've also been ill forever too. I Hate being like this and every time I have to give up another thing I want to crawl into a ditch and never come out!!

I hope you feel better soon and try to ignor those that do say such things. It's not a good place to be in when you have your whole life before you. Hang in there, we all care about you.

*boogie Jo

[gambles]

EEK!! People can be just plain ignorant. There is nothing more to say than RN or not, he is severly lacking in compassion.

I'm glad getting answers helped you. I hope typing out your pain was cathartic. I find that pounding on the keyboard when someone hurts me is incredibly helpful! :) It's great to have this forum - even when we take breaks. I had to reregister for the third time here recently! Oh well, welcome back.

Suzanne

[Kira]

I completely understand and I'm sorry you have to go through this.

When I was in undergrad (21 yrs old), I went through my first experience with serious, unexplainable symptoms. It was the first time I was really sick and the doctors couldn't just say what was wrong and fix it. And it was my first experience being dismissed as "crazy" by doctors, friends, and even family.

I woke up on a Friday morning with a big numb patch on my left upper leg. I didn't think anything of it at first and just wrote it off as sleeping on it funny. But, as the day wore on, the numbness didn't go away... it spread to other parts of me... most of the rest of the leg & my left arm , as well as parts of my face. I was kind of freaked out by it and went to the ER with my boyfriend (who I had been dating for 3 yrs and living with for 2 yrs). They told me "you can't be having a stroke or anything like that because you're too young," did some basic bloodwork (CBC & electrolytes), and told me to see neurology. Over the course of the weekend, it didn't go away and got worse. I was dropping stuff from muscle weakness in that left hand, my gait got weird, and I was sleeping ALL the time. So, back to the ER rather than waiting for some neurology appointment. They ordered a neurology consult and basically got me all freaked out because I needed an LP and an MRI, looking for MS. They also ordered bloodwork for Lyme because I'd been camping recently and had a tick on me. To make a long story short... after a bunch of scattered abnormalities on tests that no one could explain, nausea & vomiting that caused me to lose 17 lbs in one month, lots of doctor appointments, and too much time at the hospital... I gradually got back to "normal" on my own, but I was left with doctors, friends, and family that thought I was a hypochondriac, stressed-out drama queen who had nothing wrong with her since MS and Lyme had been ruled-out.

Fast forward a few years, and now we know what's wrong with me. And now, all of the sudden, we can explain what happened back in 2000. I have a mitochondrial disease, and one of the things mito can do is give you "stroke-like episodes" (that is the "S" in MELAS). Basically, mitochondria are the parts of our cells that provide make the energy, and mine don't work very well. When you have a "mito crash" or a flare or whatever, your mitochondria are not managing to meet your cells' energy needs, and so whatever cells are affected start functioning poorly and dying. Well, if that happens in a chunk of your brain, it looks like a stroke but doesn't necessarily show up on imaging (though it can). All of the other stuff happening back then... the severe exhaustion, the nausea & vomiting, the weakness... that is all pretty typical for me when I have a mito crash. So now, in retrospect, people believe me. But at the time they were all such jerks about it... I alternated between being really angry with them all for not believing me and doubting my own sanity, wondering if I really was just nuts.

When you have something wrong with you and the docs can't easily figure it out, people get really weird on you. They (everyone) didn't start taking my complaints seriously until I had this really, really obviously bad attack of rhabdomyolysis, complete with black pee and a CPK of 109,503 (normal is 0-125). That doesn't just happen out of nowhere, and it is really unusual to see a CPK that high. But, even after that, I have had doctors blow me off. My first neuromuscular doc tried to tell me that everything was just from depression EXCEPT for that one episode of rhabdomyolysis, which was just "chance" and could have happened to anyone. He was missing some pretty obvious things that countered his argument (like the 4 hospitalizations and 3 rhabdo attacks I had in the 4 months since the "big" one, or the grossly abnormal muscle biopsy specimen he had sitting unprocessed in his lab, or my wildly abnormal labs). The difference was that I BELIEVED MYSELF by the time I met this jerk, so instead of letting his dismissive attitude interfere with getting the care I needed, I transferred to another neuromuscular doc at a different hospital, and she was much better. It still took two more years for them to confirm it was mitochondrial disease via a correctly-done muscle biopsy, but during those two years people believed me. They would refer to it as a metabolic myopathy and say that we just didn't know which metabolic disorder it was, but we knew it was one of them. And now, after all of that, I have clear, objective proof that it is a mitochondrial disease from my muscle biopsy.

Reading about your experience with your friend REALLY took me back to the time I spent KNOWING that something was wrong with my body but having docs say it was nothing since MS & Lyme were ruled-out... and having my friends and family doubt me because the doctors did. Now I know they simply didn't do the right tests, and that's why it looked like nothing was wrong. But it was hard enough being sick and scared... I didn't need the people I loved to doubt me, and I certainly didn't need to doubt myself.

I also wanted to ask if you've been evaluated for any metabolic disorders. No one even thought of it back when I first had all of those neuro symptoms, and because the diseases are kind of rare and the biochemistry involved can be pretty complex, a lot of doctors just plain don't know much about metabolic disorders at all. I can't think of a way to explain your spinal findings in terms of a metabolic disorder, but the other stuff you have going on just sounds so damned familiar. Neuromuscular docs can sometimes help figure out metabolic disorders (a subspecialty of neurologists), but the doc who finally put all the pieces together for me was a metabolic/genetics doc. There are some blood and urine tests they can do to screen for various metabolic diseases that are easy enough to order but can be hard to interpret... but sometimes those tests turn up normal, inconclusive, or just plain weird (especially if you're not particularly sick when tested). They can test for a lot of metabolic diseases with a muscle biopsy and/or a skin biopsy... but they have to know what they're looking for, and the biopsy has to be done right. My first muscle biopsy was kind of botched and they didn't do it right to look for mitochondrial disease, so it came back very abnormal but in nonspecific, puzzling ways. The second muscle biopsy was done right, and it gave me my diagnosis. Anyway, it might be a shot in the dark, but like I said, so much of what you're talking about sounds really familiar. If you want to read about mito, there is some great information at the United Mitochondrial Disorders Foundation website (www.umdf.org).

[illusion129]

Cindy - it sounds as though your daughter and I are in the same boat! When I first 'started' seeking "help" for my symptoms, they were also dismissed as growing pains, as I was only 14 years old at the time. It all started with this annoying knee pain that I would have if I stood up for more than 5 minutes at a time. Slowly but surely my lower back got involved. Last but not least to start hurting badly is my upper back region, including my neck and shoulders. The last MRI I had of my spine showed 4 levels of degeneration in my cervical spine and 2-3 levels in my lumbar spine (they didn't do my thoracic spine). But yes, the Neurologist who ordered these MRIs as well as the Radiologist who "read" them both agreed my spine is like a senior's spine with way too much degeneration happening for my age.

The best thing you can do, since she's obviously in a lot of pain from her back, is to get her to a really good pain management physician that BELIEVES her fully. Hey, you could even get a PCP to do her pain management, if you could find one willing to do it (my PCP is also my PM doctor - it helps sometimes to have them be the same person). At first my PCP was hesitant at prescribing opiates and I understood why. But after several different treatments including shots of steroids, nerve blocks, chiropracic care, and massage therapy didn't help me a lot we decided it best to try the narcotics. To this day it's been the greatest help, even though I'm still "stuck" at home most days, it beats lying in bed ALL the time from pain so bad all you wanted to do was sleep your life away (and believe me, I was to that point - even suicide would have been too difficult to carry out when I was in that physical state.)

Tell your daughter I wish the best for her. All I can say to you is "be there for her when she needs you!" There have been many times that all it took was someone to listen to me to make me feel a bit better.

Jo - I didn't mean you "attacked" my friend...but you did have some harsh words about disconnecting from him if his ignorance persists. Like I said before, he's just so concerned about my age and what will happen to me in 5, 10, 15 years from now. I use a cane to walk most days 'now'...will I be in a wheelchair in 10 years? Who knows, but I know that 'that' particular thought is what "upsets" him. I'm only 21, I shouldn't be dealing with this crap! He said he'd never seen someone as young as me with as many problems, but baby, there comes a time for EVERY thing. I did see on Yahoo! Answers a girl of only 16 who had every symptom I do, so at least I know I'm not alone in the world! I just wish they had a little machine that would test your blood and list everything wrong with you with a 100% accuracy rate; just knowing what's wrong with me would help a little, in some strange way!

Suz - Thanks for the reply! I can tell you the usual thing I do when I get angry or frustrated with someone that I'm chatting with online is shout at my computer! Ha ha. Not like that does any good but I always do it. I guess just getting it out in the open, even if I'm the ONLY one in the room, helps to relieve the added stress. And yes, some people are just plain ignorant. For some reason I can usually handle the middle aged people trying to mouth off to me but when the older generation(s) do it it's almost impossible to deal with because most of those people are set in their ways and won't listen to reason. Urgh - just like my father! LOL.

Kira - No, never been tested for any metabolic disease or illness. How do they go about testing for things like that? I have however been tested for a wide range of other things, a couple I'm not so sure about the test result, particularly the RA-factor one and the Lyme Disease one. I'm iffy about them because the sensitivity of the test can often yield a negative result when you really do have the problem. That's just annoying, isn't it? It'll detect it in say 47% of people but not the other 53% or something like that...it just sucks!

It definitely sounds as though you and I have had a similar path with our problems; years of testing (right or wrong) with an answer, people that doubt our symptoms, and doctors that blow us off. It's all the same routine. What gets me is this - at least half of the specialists I have gone to ONLY tested me for the thing the referring physician asked them to, NOTHING more. It's like, what the hell is your job? To look at one thing and not investigate further leads? WORTHLESS! I could have called you myself and said, "Hey, I think I have MS so run this test." If I wanted that conclusion I would have done it myself, not had a referral. Some doctors are just plain stupid. At least my Rheumatologist keeps testing me for different things, trying to come up with the answer. She's a great doctor and is very compassionate and my other doctor seems to think she's a great asset to my health-care.

At my next appointment I will ask my doctor about the Mito. problems and see if she thinks it's worth investigating. I myself have no idea about them, even though I am going to read the link you posted, and perhaps maybe I'll find something out!


I just wanted to let everyone know how much I appreciated your thoughts and concerns. It has meant a lot to me and I hope each and every one of you has a great day! :D

[Kira]

Just know that a LOT of docs don't know anything about mito, or only know the little bit that gets mentioned in med schools (which is generally just stuff like MELAS, MERRF, MNGIE, and LHON). Many docs still think that you have no likelihood of having mito if you don't have the classic presentation of one of those disorders, or if you don't have multiple family members with a classic presentation, or if your muscle biopsy doesn't show "ragged red fibers" (MERRF). But in reality, they have found that a LOT of people have mito (based on biochemical testing done on fresh muscle biopsy specimens) who don't fit the above criteria.

So, she may dismiss the mito idea pretty quickly because a) most docs don't know much about it, b) there are a lot of misconceptions floating around about how to tell if someone has it, and c) it is hard to test for if you don't know what you're doing.

It is really important to see a doc who knows about metabolic disorders if you are considering getting a workup for them. Generally, this means that you either find a metabolic/genetics doc (they are often affiliated with children's hospitals and/or university teaching hospitals), or you go to one of the few places that has an actual mito clinic. The places known for their mito clinics are Tufts-NEMC (Dr Mark Korson), Cleveland Clinic (Dr Bruce Cohen and Dr Sumit Parikh), UCSD (I forget the docs' names there), and Horizon Molecular Medicine in Atlanta (Dr John Shoffner). Dr Shoffner is THE guy to see for the muscle biopsy to clinch a suspected mito dx (or rule it out)... basically, you need a lab equipped to do the right testing, and some of it has to be done on "fresh" muscle, so you have to get your biopsy done close to where the lab is. He has kids get their biopsies done at Scottish Rite Children's Hospital and he has adults go to the hospital across the street from there, Northside.

They can do some blood tests looking for some of the known mito mutations, but those are only meaningful if they are positive, since a lot of us with mito don't have one of the known mutations. That is just a blood test and can be ordered by anyone. Also, some people with mito have a high lactic acid level in their blood, or an abnormal ratio of lactic acid to pyruvate. Those are more blood tests that are easy enough to order but can be hard to interpret. For example, my lactic acid level is usually normal, but can go up when I am particularly sick... although, even when I'm sick, it doesn't go that high. Other people with mito have high levels of lactic acid much more often.

They can also do blood and urine testing looking for unusual levels of different organic acids, fatty acids, amino acids, etc which build-up when a metabolic pathway is broken. Think of this kind of like a traffic jam. The broken enzyme is like an accident on the freeway, blocking traffic. "Upstream" from the broken enzyme, traffic accumulates because it can't get through. "Downstream" from the broken enzyme, there is less traffic than normal because it is taking so long to get past the blocked part. Well, in your body, the stuff that accumulates upstream from the broken enzyme will be found in high levels, and the stuff that is downstream from the broken enzyme will be found in low levels. Based on what they see high or low levels of in your blood/urine, they can sometimes tell what enzyme is broken, or at least have an idea of where to go from there with testing.

Another way to look for mito is just to have a doc who really "gets it" look at your overall presentation & combination of symptoms. Because mito often affects multiple organ systems and some combinations of complications are more common in mito, a doc who sees a lot of mito patients may pick up on something just based on your symptoms. Of course, they generally follow that up with more concrete testing, like a muscle biopsy, since mito is such a crappy disease and they want to make sure.

I want to make sure you know that, again, I'm not too convinced that you have mito (the spine stuff doesn't fit at all). It is just that what you've been going through sounds SO FAMILIAR to me that I wanted to let you know what mine all ended up being, and how they test for it.