Check-in for those not yet diagnosed

[cricket52]

Hello all:

Another week has flown by.

All the research about axonal loss and atrophy lately has made interesting reading. I can't pretend to understand what it all means. I suspect the last frontier isn't outer space, it's inner space. One can't help but wonder if science will ever plumb the depths of how the brain works. How many axons have to atrophy to cause physical or cognitive problems? When there are no lesions what causes it?

On a happy note I finally got a couch! Now I can lie down when I am tired without my child getting panicky (she hates to be left alone). It must be hard for her, she doesn't understand that I need to lie down, in her world I just fall asleep and she has no one to talk to or help her. This way we can be in the same room, she can watch TV and I can snooze. My budgie won't scold because I disappeared either. I could have picked up a second hand one or a cheap one but having been there done that I wanted something I would have for years and could pass on to someone in the family. Winter white leather. Being 'vertically challenged' makes sitting on a bus or many chairs uncomfortable. My feet touch the floor when I sit on this couch.

A Wii and a couch. My life is full and complete. I wish I could stop obsessing about not being able to work. It's never going to happen and while I have accepted it intellectually, emotionally I'm stuck. Probably a few damaged neurons....

How are the rest of you doing?

[RoseButtons]

:( well i have to say this thoroughly su***,,,i been up the entire night since 10:30 last night and now it is 6 am.

clonus clonus and more clonus:mad: and did i mention the clonus?
weather moving in and the barometer dropping rapidly. that is just a theory of mine but it gets worse for me then every time.

i even broke down and took "Zana/Coma flex" and still no help. so now i am dead tired and i am sure still wont be able to sleep and this afternoon i have to get my butt in gear and my boyfriends,,i still cant drive from the broken hip, go get my daughter and get this doctor visit over with. the appt is at 4pm.

she calls me every hour to lament how the wait is driving her crazy:cool: HER??? :P i had more relaxing 4 days myself thank you.

just checked my bank and realized i have zilch:cool: again:cool: That is what i get for paying the power bill and stuff.
how is one ever supposed to get a foot on the ground living of the smallest amount of social security you can make? i am sort of hung up on that gripe since i no longer will be recieving child support after this month.

well anywho, i am going to surf around the ol net for a bit and who knows maybe by some miracle i will sleep an hour at some point and tonight i will let you all know what my daughters test said!
have a goodish day everyone:D

RoseButton

[cricket52]

Rose, I'm so sorry.

Weather and stress must be aggravating your clonus. Trying to live on such a limited income is next to impossible.

Hope you are able to get some rest tonight.

[Barb]

Rose

You live in the US right? - If so your daughter can go to the free natal clinics for check ups and they will even cover her and the baby for delivery (hospital fees). Think she can get medical help while she is pregnant and also she can sign up for WIC.

If you haven't already done so - with your income - since it will change - remember that you may also qualify for state aide as well. So may be a time to check into that as well. Even if you are already getting some state aide - the change in the income is great enough that it may up your state aide amounts and qualify you for other programs. So do check into it all.



Cricket - it's funny you mention axonal loss - because that is what is going on with me as far as my neuropathy goes. Why they have no clue. Yet at the same time, I can also tell that they seems to be some atrophy going on in one leg. At least I can tell one leg seems to be thinner than the other at the shin area.

So the question would be what do the nerves and axonal loss in them have to do with the axons in the brain? Seems many of us have numbness and tingling and balance problems as well. Yet most doctors (like in pat's case) just write it off to something else. In my case they haven't done a brain scan because of the PN.

Yet it's clear I have axonal neuropathy type of peripherial neuropathy. So if the axons are deteriorating in my leg - would they be detriorating in my brain? Guess that is a good question - maybe something I will ask a rheummy who may order the brain scan ........ lol



Whisper - you know walking on the cool tile floors does feel good especially in the summer. But at times it can also feel like ice picks going into the feet. Is that the type of feeling you get as well?

I remember once I was so hot my hubby told me to go take a cool bath to cool off and I sat in the bath tub trying to cool off and in tears because it felt like daggers going into my legs. He came in to check on me and asked why I was crying and I told him and he was like get out of there if it is causing that much pain.

I mean it felt good on other parts of my body other than my legs and I did need to cool off my body. So since then I only take hot showers or baths even though it makes me sleepy for a couple of days. Better than dealing with pain.



As for me - well this week is going as good as can be expected. The pain levels have really increased. Must be that storm system that everyone up north is getting. The cold front is coming through - if you call it that - we are to only get into the upper 50's tomorrow.

May be a busy month this next month with doctor appointments. I have neuro appointment, need to get back into PCP - will try to get into rheummy - not sure how long that will take and also will try and get into ortho this month or next.

[Whisper]

Whisper - you know walking on the cool tile floors does feel good especially in the summer. But at times it can also feel like ice picks going into the feet. Is that the type of feeling you get as well?

I remember once I was so hot my hubby told me to go take a cool bath to cool off and I sat in the bath tub trying to cool off and in tears because it felt like daggers going into my legs. He came in to check on me and asked why I was crying and I told him and he was like get out of there if it is causing that much pain.

I mean it felt good on other parts of my body other than my legs and I did need to cool off my body. So since then I only take hot showers or baths even though it makes me sleepy for a couple of days. Better than dealing with pain.





I don't get pain with it as such, just a burning. I feel that if I don't 'cool them down' right away (my feet) then they will spontaneously combust. Not fun...but I really feel for you, if cooling down causes that much pain. Not a lot of fun.

Hot showers leave me so weak and shaky! I NEVER take those anymore.

Lorraine:)

[RoseButtons]

whewwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwwww:p
got the results from her bloodtest earlier today and she is indeed not pregnant her symtoms may have been caused by extreme low iron levels, so i am glad we had it checked out so we can do something about that.

i went to the ortho for a hip surgery follow up and found out that he thinks the bloodsupply to the top of the femur (the part that broke off) may be compromised. he wants to wait another month, run an MRI and a Cat scan and then decide. if it is ,,,guess what??
i will have to have a full hip replacement:(

so that was definetly not the news i was waiting to hear. he did warn me about this possibility when i was first in the ER, when they break completely off like mine did it can do that and it takes a time to be really evident.

life is grand anyway today cause my kid is NOT pregnant and her next dr. appt is next week to make sure she is on the correct birthcontrol now.
at least this boyfriend stuck around and spend 3 days holding her hands making sure she would be ok.

whisper and barb
i first had PN about 8 years ago and it was on the front of the legs on both legs. mine felt like someone was holding a torch to the skin burning it,,,man that was NOT fun and some realllly serious pain,,but another one where people say,,"oh but you look good" since it is not a bleeding headwound.
i feel for you and hope you can control your symtoms....
hugs to all
Rose:D

[Suze E Que]

Hi all - Glad to hear the good news Rose Buttons! What a relief huh? Been there done that! Just no fun at all.

So all week my right rib cage is just in horrible pain. It's sore all over. Muscle relaxers seem to ease it a bit which makes me think its just muscle spasms. I've been sleeping on a heating pad which also helps.

I've had this before and thought it was a liver or gallbladder thing but all those tests were ok.

Just trying to hang on till Friday when I see the new neuro.

Anybody ever had this?

[Barb]

Rose

Sounds like the doctor thinks you may have osteonecrosis in your hip from your fall.

here is a link to a good support group

www.avnsupport.org

you can also learn more about it at

www.aboutjoints.com

the avnsupport group also has a yahoo site that you can join that has a wealth of information and links about osteonecrosis or better known as Avascular necrosis (AVN)

Hope these links help you some with some information. I can't answer questions about the hips - but Marie and the rest surely can as they have been there done that ......... lol

Suze - Spasms in the ribs - yeppers all the time - doctors write it off to my shoulder injuries at this point. Actually that is what woke me up this morning. Nothing seems to help me much. Even at time feels just like something is squeezing me. They also say it could be from the bulging disc and inflammation around the T7 area. Can't win for losing - can I?

[RoseButtons]

going to check those out now,,that is the word he used,,,i tend to forget the medical terms the moment they traveled from one ear to the other:o !
since i cant sleep i guess that will give me something to do, read up on what this actually is.
hugs
Rose

[RoseButtons]

no wonder the ortho had such a concerned look on his face when he was telling me all this.
i just read up on this stuff and i am about to throw in the dang towle.
WHO did i piss off up in the office to pick up a case of THIS now???
did i not have enough stuff wrong with me?
am i just working off a karmic debt of gigantic proportions????

i feel like i am about to loose my thought to be indestructible sense of humor. and i am not kidding either.
of course now the klonus is going all over the place between the stress of the kid and this new thing and the temp dropping from 67 degrees this morning to possible snow today.

i am soooo not a happy camper right now. i can not believe this is happening.
go figure,,one of the first thing they actually got a "name" for and it realllly realllly sucks!!!

i have a ninety year old body and i am only 41,,i sure as hell dont want to think 10 years ahead,,one day seems stretching it today that is for sure.
i dont mean to excessively whine i know there are people on this board in so much more pain and with problems mighty huge,,,but this is my problem atm and i am not doing really well handeling it.

i already feel like i am a "bump on a log" and this is NOT helping.

well i guess i will go and join the AVN support group as well. i guess it would beat jumping of a roof which seems like a loverly thought right about now.

hugs to all
Christiane aka. Rose Buttons

[cricket52]

Hi RoseButtons:

Whew is right. Huge relief.

Sorry about your hip - can't believe they are going to charge you again, you would think it would be free. In the consumer world you can return damaged goods...wait...that would be us.:( :(

Damn - that really sucks. You are like Teddy, you manage to stay cheerful in spite of overwhelming odds.

Suze:

How did the appointment go? Did you like your new neuro? Did you get any help? Any answers? Too many questions? :)

The pain in the rib thing is not fun - you think spleen and kidney or liver and gallbladder depending what side it is on. Barb is right - not much helps. Hope you feel better soon.

So - was the new neuro cute? (If one has to see a doctor then it's nice to have something pleasant)

[Barb]

Rose

I am sor sorry to give you the bad news about what to expect. But trust me at least with the support group - they can give you a list of questions to ask your doctor so that he is not doing unnessesary surgery or the wrong surgery.

At least you can make an informed decission. Marie, Karen, Father Mike and the others at the support group are fantastic help and wonderful at answering questions. Just like here you can vent, ask questions, and we even have live chat a couple times a week.

I look foreward to your post - I will let you know who I am. hehehehe

[RoseButtons]

I am going to take a wild guess you are something with "Barb" or "Pooh" lol!!!
just waiting on their email so i can join.
hugs
RB

[Suze E Que]

Well guys I kinda figured I was not alone on the rib thing. I actually went to the ER tonight it got so bad. It hurt to breath. I got a shot in the butt which helped for about 2-3 hours (the time I spent in the ER basically) while waiting for xrays - (normal of course), and I got a script for tylenol 3 which I cant fill till tomorrow :rolleyes: Oh well whats one more night of no sleep.

Cricket - I didn't see the neuro yet - not till next Friday. Rest assured I'll give you the whole scoop. :)

I think I'll go cuddle up with my heating pad now. Hope everyone has a comfortable night.

[Barb]

rose

You are so right - but I always sign it with Barb in Oklahoma - just so you know.............. lol

I have suffered from AVN in the shoulder for about 5 yrs now also from an injury - but no surgery yet. Guess this is the year :-( for that since the pain is finally getting to bad to deal with.

What I can tell you is that you need to ask lots of questions about the doctor because not all orthopedic doctors are familar with AVN. This ortho that you are seeing must be since he actually knew what it was - surprise surpise.

What stage are you in?
Why does he recommend a full hip replacement?
What other options are there? What are their sucess rates at your current stage?
How many patients has he treated with osteonecrosis or avascular necrosis?

I know there is a full list and father Mike has them posted someplace - you can alway search his posts once you get on the yahoo group site.

As far as it spreading to other joints - since it is trauma related the chances are very low that will happen. Most that get it because of trauma only see it in the joint that it appeared in. Now saying that, hopefully will make you feel somewhat better. And also with hip replacement these days - they are lasting a lot longer than they did in the past - some can last you the rest of your life - so could be that you only need the one surgery - God willing.

Also - word of warning on yahoo group - if you don't want a flood of e-mail - choose daily digest ............ lol

[Barb]

Suze

Nope your not the only one that suffers - and yes the heating pad does work wonders.

Glad you got some relief even if it was short lived. Take it they found your ribs were normal ......... didn't you tell them you were a medical mystery????

Hope the T-3 work for you. They never did much for me - except make me sick. I am such a weenie when it comes to narcotic pain meds it's pathetic. It will be interesting if I ever get past the davacet to see what will happen ..... lol

What really worked for me though was toradol - think that one shot lasted for about 2 weeks worth of relief. But for some reason doctors don't like to give those scripts out like that ......... not sure why if one pain pill will work for 2 weeks why not ........ guess the pharmacy doesn't make money that way. Oh well - I guess I am more of a mystery to them than they like.

[RoseButtons]

i will certainly look for that list and ask him just excactly all those questions.

i think the reason he is talking hip replacement right away is that the bone was broke so funny that trying to do anything else with that would be a bit of a mess.

also my joint wasnt the greatest to begin with from the "thing" i had since i was a kid i guess they eventually settled on "mild cp",,,,all this other stuff came on in my mid 30's,,,bonus material you know.

on the list of 50 hospitals in the country that are the best for the AVN thing Barnes Jewish Hospital in st.louis is number 11 and my ortho is also liscensed to operate there and does so frequently and is consulted by other orthos.

he has been doing this for almost 30 years he is one of those that can still diagnose with touching the spot instead of MRI's and stuff.

so yes i trust whatever he comes up with.

in pain today but got some sleep even if it was zanaflex induced. they dont call that stuff "coma flex" for nothing now :P

talked to my sister this morning,,,she now knows about this but i am not even going to bother to tell my parents even if it is. they are in their late 70's and both in germany and whatever it is that is wrong with me alway s has to do with "diet and not drinking cammomille tea" and i am not making this up.

if i hear about the tea ONE more time i am going to loose it.

then again,,,maybe if i drink a gallon of cammomille tea i can fix my financial situation???:rolleyes: i guess worth considering :P

got my first letter today about "make a new appointment to be reevaluated for assistance as your child is turning 18" those are never good news and i am sure they will cut some other stuff,,,well i only get a medical card and foodstamps and i am not saying ONLY as in i am not eternally grateful, but i could never comprehend how they can say i have TOO MUCH and i dont qualify for anything else,,or i am TOO HEALTHY,,,i just love that one.

one agency actually told me "call us when you get worse"!
oh yeah i get right on that,,what morons......

hugs
RB

[Barb]

well guess what rose

You just got worse - You are now officially part of the rare disease group.

Now to top that off - you can print out the info on the pain that you go through and hand that to them - got to love all the research that Marie has put together for all of us - and say here you go. Considering the pain of AVN is equivalent to that of bone cancer - (so they say - I don't know for sure other than there are days).

So maybe you can get more help now. Sounds like you have a good surgeon as well. Which is always a plus.

I agree having faith in the doctor is a must. I will be going to the clinic that is number 1 here in Oklahoma when I see an ortho. They are also familar with AVN. One of the very few places in the state that are.

[RoseButtons]

yippee i got worse :rolleyes:
its a screwed up world when that is actually a positive thing lol,,oh lord i have an odd sense of humor that will either be the death of me or my only survival tool.

hugs
RB

[Barb]

Well it will be your survival tool - from the hip replacement you looking at - at least a year recovery time - with possible MS thrown in - it may take a bit longer. Think of all the PT you will have to go through. Balance Balance Balance.


lol Guess you won't have to worry about balance for a while with that lovely walker out in front of you after you get out of the w/c. Oh and think of the different things you can do to decorate your came to make it all pretty and match your outfits. Stick on flowers for spring and summer - snowflakes for winter and how about falling leaves for fall? I am sure they have those around that you can find in the craft aisle.

Can you tell it's been another sleepless night for me.

(((((((((((((hugs)))))))))))

[RoseButtons]

yeah i can tell its been a sleepless night for me,,same here,,leg spasms from hell again.
just had yet another bath, meds etc tried the music the meditating you name it.

no luck
rocking back and forth trying to make it stop and trying to distract myself. not working to well :P.

i guess i try to do a little email.

hugs
RB

[RoseButtons]

ok this is getting very very old. 72 hours and no end in sight, this hip is hurting something fierce and the spasms are not helping the matter.

yesterday the doctor called and moved the MRI up from the first week of april as he had originally intendet to this friday with an appt. to follow next tuesday.

wish me luck!
RB

[Barb]

Well that is good that you don't have to wait a month to get the MRI. So seems he is more worried about it and wants to follow up with you quickly.

Some things that may help with the pain - heat or ice packs. If you want a quick heat pack - make yourself a rice sock. They are flexable and will mold easily around the area. I think you just nuke the sock for about 30 seconds - don't want it to hot ........ lol

Fozen vegies - especially corn or peas work well for ice packs if you don't have any of the jel ice packs that mold around an area.

Did he not give you anything for the pain at all? If not and you can get into your family doctor - you may be able to get something from them until you see your ortho on tuesday.

Actually my family doctor handles prescribing my pain medications - this way she stays up to date on all my medications and all that is going on with my body since she sees me the most. Some family doctors will do that and some won't. But something worth checking into.