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View Full Version : Need some advice on ALS/Lyme/Mold..Hopin al and wright will give wisdom


kelly11016
03-22-2010, 01:06 PM
Hi All

I have been following many posts on these forums for about a month now. Days have been rather bleak lately if you know what I mean. You all seem very knowledgeable about ALS and everything that it entails. I love reading your posts and find most of them very informative and some rather hysterical when you guys get on people.

I am a 28 year old female. Before a month ago, I was in super good health, def a fitness buff, and a cheerleading coach at that :) This year I have been dealing with a lymes disease diagnosis from last February. I tested double positive by CDC standard on both western blot and elisa tiered testing by LabCorp of which I hear I am lucky to have been positive. I was treated with 10 days of doxy 200mg and seemed to resolve alot of my symptoms of pain, tremor, and jerking last year. Since July of this year I have had extreme memory problems, losing my car a couple of times, forgetting familiar peoples names, word finding speech problems, slurred speech, electric shock sensations in my neck, tongue, and arms. I also drooled a couple of times while reading at school. I'm a Physicist :) nerd I know..

I have horrible acne and scalp acne since being treated with doxy.
I am allergic to all hair care products except Head and Shoulders and dial soap.
I am allergic to milk and nuts now.
I get these electric shocks in my neck without moving it at all..it feels like someone slaps me.
I still get the muscle jerks.
I get these creepy crawley sensations all over my body kinda like ants crawling
I feel these vibrations in my legs and painful jabs in my body
I get chest pains where it feels like andre the giant is hugging me'
My heart also slows down and I have to cough to get it to start back up

My recent problematic symptoms leading to my hysteria started this February with numb toes after working as a bartender one night the numbness stayed for over a week progressing into a jello like feeling leg but I can walk fine and run upstairs..its just funny feeling and painful joints in my knees, elbows, ankle, and lower back that causes numbness as well when overworked. I also noticed muscle twitching in my legs and feet and then all over. I noticed a few twitches in my butt as well lol..

I know you guys are very intelligent so I wanted to present this case to you as it is very odd and I'm am very interested in the overlap of conditions while none of my doctors seem interested in my case. I must admit I am more scientifically anxious than health anxious.

I have had MRIs of brain and lumber, cpk, ana, b-12, emg of problematic leg, arm, and 2 paraspinal insertion at the neck. All normal and my neuro even said my emg soundedf more normal than normal people..whatever that means. My reflexes are somewhat hyper but I'm an a super anxious person. No clonus, no babinski, no atrophy, or clinical weakness as I can tell..there is alot of discussion on weakness..hmm.

My Lymes test last week came back again double positive for a flaming infection. My wonder is...in your opinion is it possible for lymes to turn into or trigger als, do you think I could possibly have als, and also if it is lymes/als could black mold exposure trigger these conditions. I only ask this is because I am a disgusting car keeper. Before I got really sick with these symptoms, I cleaned out my car of 5 years and found a terrible mold infestation in my car which was probably there for a long time.

Your input is so valuable at this point as for me to direct my physician accordingly to my treatment. I am currently on IV rocephin for 28 days at 1 gram per day...I finished my 3rd dose last night and my twitching and buzzing became worse. I am a big skeptic with the whole lymes ordeal even though my physicians believe I am under concerned. Having been bitten at basic training in 05 and got really sick and then again in 08 with the rash and sick again. But hey I'm a skeptic its the scientist in me..even though my doctor is extremely worried about the lymes and I worried about mold and als lol..

Please advise me to your best knowledge because I highly regard your opinions

Thank you in advance for you time

Kelly

jeff1717
03-22-2010, 02:40 PM
You had a normal EMG which means no lower motor neuron involvement which means - no ALS
A month ago you were healthy - not ALS
You've tested positive for Lyme - not ALS


You say you're a scientist so look at the facts. You're positive for lyme disease of which there are an estimated 100,000 cases annually in the US as opposed to 5,000 for ALS. You have none of the requirements for an ALS diagnosis but instead have things that disqualify an ALS diagnosis. Lastly, you tested positive from Lyme (did I say that enough)

If it looks like a duck, swims like a duck and quacks like a duck ... it's a grizzly?!?!

wright4499
03-22-2010, 05:26 PM
I couldn't have put it any better myself . . . although I think I would have gone with a polar bear instead.

Not even close to ALS symptoms but I'd have to say pretty darn close to Lyme's disease . . . probably because you've been diagnosed with Lyme's disease.

Oh . . . AND NO . . . there is absolutely no evidence at all that Lyme's disease or mold causes ALS, unless of course you look on the internet. I'm sure some moron (or morons), somewhere in the world has (have) made the claim and posted it online.

Good luck with your treatment, of your treatable condition.

kelly11016
03-22-2010, 08:08 PM
Hey thanks you guys...I have tried not to jump on the Do I Have ALS bandwagon too much..because you always acquire the symptoms when you play with Dr. Google. I knew I could rely on you guys for an honest answer. Thanks for not pummeling me too bad :)

I have read your other posts Wright about EMG accurracy and I copied it and saved it to my desktop so I could read it when I get nervous. It is true that if my fasciculations and jello leg were present at the EMG my neuro would have caught it correct? I got pin cushioned on the jello leg.

jeff7160
03-23-2010, 11:13 PM
Lyme causes all kinds of funky stuff to happen - still not sure why you would even show up after a flaming case of Lyme. If it were me I would be beating down the doors of the premiere Lyme docs in the states to get on top of that and zap it.

kelly11016
03-26-2010, 12:56 PM
Hey you guys,

All your points are well taken...trust me..its hard to be at peace when I feel like a one woman circus lol...today is my 7th dose of Rocephin and I have had a fever and bottoming blood pressure everyday. All my symptoms plus some from the past have reared their ugly head again like the full body jerks. I had a follow up appointment with my GP today to review my progress and do blood work for thyroid crap and he checked me over and found that I have tongue fasciculations...hmm. He made me stick out my tongue and hold it there for like 30 seconds while he stared at it. He said he found wiggling fascics in my tongue.

My question is everyother time that a neuro looks for fascics on my tongue...they make me rest it in my mouth...my tongue doesnt sit still after 30 secs of sticking it out...is this a valid observation of fascics because I'm skeptical...plus I have no weakness I can tent my cheeks and feel all of my teeth etc. No problem swallowing but do have the speech problems.

Wright is this doc a quack? because he sent me back to neuro for another emg on bulbar on friday...my neuro is going to probably call him and tell him to quit sending me if the EMG comes back normal again.

and will he stick those needles through my tongue or will he do the paraspinal back of the neck muscle again for bulbar?

Thanks guys for all your time...I know it gets frustrating..since Rocephin I feel like I'm going downhill..which I read is possibly normal.

kim6432
03-26-2010, 01:09 PM
I think your exposure to mold could complicate your symptoms of Lyme's. Mold is a big, big nasty! To those of us who have read your well written post, it is obvious you have Lyme's. It is an entirely different booger than ALS; one that is treatable!

I second the idea to get on with one of the best in that field.

You can rest assured of one thing; it won't morph into ALS.

Zaphoon

joanne10766
03-27-2010, 12:41 AM
hi,
my healthy husband's tongue twitches when he sticks it out. I have the light popping twitches in my tongue and I can feel that when it happens. And it sits still inside of my mouth. That's GP who checked out your tongue, not your neuro. So don't worry.

rob9920
03-27-2010, 05:01 PM
If you have Lyme, you have Lyme.... End of story... It can cause more symptoms than MS.... So anything weird happening to you is probably the Lyme. No real point banging your head against the wall thinking it might be something else. Treat the Lyme! And everything else should fall into place....

P.S. Well, this is an ALS forum, so we probably should not be posting much about this topic here. But one thing should be posted is that yes, you can twitch, have weakness, bulbar symptoms etc etc, and still not have ALS! Lyme is just one many things that can cause this.... And yes, the EMG is usually normal with Lyme! So if your EMG is clean, you should be fairly sure you don't have ALS!

kelly11016
04-02-2010, 11:46 AM
Ok so all my tests came back normal...kinda sad today bc I was hoping for some answers but neuro said he has none at this time. I'm in the wait and see game officially..this sucks...scheduled for another emg in 3 months. What now?

brian9954
04-02-2010, 12:57 PM
Kelly...

No offense, but you should be exceedingly happy, not sad, that the neuro tests came back normal! While I can empathize your need for answers... trust me that you don't want to hear that it's ALS (or many other neuro problems that your tests have eliminated ).

I am a scientist/engineer as well, and I can't possibly see how you can logically continue to pursue the MND/ALS front so emphatically at this point.

What now?... Continue that Lyme's treatment! Go have some fun. Trust your neurologist. Be happy for clean EMGs. Wait patiently your 3 months for new EMG.

While waiting may seem to suck, it beats many of the alternatives.

Brian

kelly11016
04-02-2010, 02:08 PM
Brian,

No offense taken I realize I should be happy..like I told the nurse/bff I guess I'm just wanting answers because i think lyme is all hog wash but I can't deny the fact that I am getting better well not progressing as fast as I was over the last 3 weeks. I am no longer worried about ALS/MND..if I have it then I have it and there is nothing I can do except get on with my life and thats what I am doing. I love checking in with you guys just because this site has given me so much inspiration from all the good people here.

I am seeing an LLMD..he is supposedly awesome because he checks for mycoplasma and viruses..all that jazz :)

Anyway thank you guys and I'll keep ya posted..I thought it was funny..my neuro said he would do an exploratory emg every week if I wanted. I think every three months is good..I'm not a fan of being a pin cushion.

kelly11016
04-08-2010, 10:22 PM
So just updating and venting a little so sorry in advance..

My LLMD pulled my IV and said the Rocephin was too low of a dose to do any good but I have been off of it 3 days and have gone back down the hill faster than I did at onset of symptoms. My toes are numb again, my leg jello, muscle aching and cramping, my speech sucks so bad I wont even talk to my friends on the phone. I've lost 10 lbs in 7 days and I'm now taking weight gainer with 5 meals a day and I managed to steal back a couple of pounds. At onset a month ago, I was 122lbs and yesterday I weighed 109. I'm so mad frustrated whatever. I keep biting my tongue when I talk and chew. And now I have this wierd blurry vision episodes.

Today I went to a Chiropractor to get accupunture. He made me do all these wierd neurological exams of which I past most but failed miserably with the drift thing..I did a whole 90 degree turn from my original position which he said told him that I am favoring my left leg, he told me my leg is weak, and sad that my feet and hands are unusually thin in comparison with my other parts, and my reflexes were really brisk. hhhmm..my mom freaked out on him a little because he did not know I had been worked up for MND and I think he felt bad but oh well..he did Xrays of my back and neck and found alot of problems with sublaxation whatever that is and popped and cracked me..

I included before that I was having Carpel Tunnel like symptoms in my arms which started at the same time as fasiculations widespread. When he cracked my neck it sent crazy pain shock feeling down my arm and into my hands. They went totally numb and then have felt better all day...so wierd.

Anyway I'm on my oral antibiotics and I guess I just need a pic me up because this is my one month since all this started and I got my first clean EMG and I feel like I'm in the same place I started. My neuro is now saying with my relapse off Rocephin I might need a second opinion. What do yall think? I'm just so tired. I did however go on a fantastic date this weekend with a great guy..had a blast shooting my AR15.

Also for any Pals reading this, if you could go back before that one dirty emg while you still had a clean one what would you do preventatively to try to halt progression to LMN symptoms? My friend has RSD and we were both just contemplating this tonight. I have all UMN symptoms besides fasciculations. So just asking opinions.

Some cool news from the LLMD, he has a girl my age that was diagnosed with ALS from UAB she was his daughters roommate in college. She came to him in a wheelchair and couldnt speak and the LapCorp nurses said her mom had to hold her head up while they did labs on her. LabCorp nurses said she is walking and went back to work as a nurse at UAB in 2 months on his treatment. My Doc cant talk about her because of Hippa but said he would see if she would be willing to email chat with me. The LabCorp nurses told me all about her so it made me feel like I was in good hands..I'm the most cynical person when it comes to miracles but they were very enthusiastic about the girl's progress. I just wish this could be the typical case for all PALS.

My doc said give him a month to see significant improvements. He offered no promises but did save my family tons of money on too low dose of rocephin but he did add that my GP prolly saved me from a wheelchair because of my acute onset and very fast progression. He said ALS does not put you down in 2 weeks of onset.

Any thoughts from the bravest people I know? Bc I am feeling kinda weak but looking forward to another date this weekend with that awesome guy. I'm going to Jane Wayne day at Ft. Benning and jello leg or not I'm repelling..havent done it since I was in the Army 5 years ago. :)

josh10812
04-10-2010, 10:56 AM
Hi Kelly,

I'm just some dude and not a medical expert. Below are some of your comments and my thoughts.

I'd recommend the Mayo Clinic if you can afford the trip. I've been to the Jacksonville, FL campus twice and fell in love with their method of treatment. Here is a shocker - the doctor's actually talk to each other about your case. You can also knock a bunch of appointments out in a quick time, instead of the usual waiting weeks or months in between.

"neuro said he would do an exploratory emg every week if I wanted"
What are you trying to find with an EMG? ALS? Plus, your insurance would probably croak if you had a weekly EMG!

"if you could go back before that one dirty emg while you still had a clean one what would you do preventatively to try to halt progression to LMN symptoms"
See above, what are you trying to find with an EMG?

"did Xrays of my back and neck and found alot of problems with subluxation"
subluxation = joint misalignments; I bet everyone on this board has this

"another date this weekend with that awesome guy"
I hope you have a great time! If it doesn't work out, I'm a 30/m. 8-) But I live in Houston.

- Josh

kelly11016
04-10-2010, 06:02 PM
Hey Josh,

I guess I'm just scared of all the things that are happening to me on this lyme treatment. I wasn't meaning that the subluxation was apart of Lou either. And about lyme, I'm just a skeptic but i'm forcing myself to stay positive. I am taking leave from this forum for awhile so I can focus on getting my lyme's treatment bc it in itself is stressful enough. I've been in the bed for 2 days and I am wiped out just walking to the fridge to get more water or food. About the EMGs I get them for free bc my neuro is my best friends husband. He is awesome but believe me he makes sure I feel every needle stick to the max so that it will deter me from asking for another one. I'm sorry I sound so ridiculous esp in the light of what everyone on here has gone through. So I am going to say bye for awhile. I will give you guys an update when I get better. As for the date, lol, you can always PM me and I'll give ya my email. I like to talk to people esp on days like today when I'm in the bed all day. I've only been on my protocol for 4 days since stopping Rocephin. He said I'm having a herx reaction but I call it H E double hockey sticks..I feel like my head is going to implode like a quasar and a black hole

kelly11016
04-10-2010, 06:09 PM
I just realized you are a new member and you dont have enough posts to PM. So I guess you'll have to pay your dues here and then hit me up. OMG hope this doesnt turn into "The Lou Love Connection" lol.

josh10812
04-10-2010, 06:15 PM
Kelly,

I wanted to apologize. I read through the "ALS/Lyme Help" thread and did not realize folks with Lyme were getting diagnosed with ALS, etc. So it makes sense to be a little concerned with all that. I have lost A LOT of faith in doctors with my own ordeals as I'm sure you can relate.

Best of luck and hope you feel better soon! How many posts to my PM limit? hehe.

kelly11016
05-07-2010, 11:30 AM
Update after 2 months on Lyme treatment and my first follow-up visit with pathologist and neurologist:

-My twitches have almost completely subsided.
-My cold/jello leg is no more
-Reflexes have almost returned to normal
-No more herx reactions
-Hypotension has significantly improved.
-Blood pressure is stable and pulse is back to normal.
-wasting of foot pad, stiffness, and parathesia in right leg
-Vitamin D low, low lymphocytes, and low HDL cholesterol

I have been playing volleyball everyday and exercising as much as possible. I have tons more energy and feel alot better.

My follow-up with pathologist was positive except for the fact he noted that my foot pad has markedly wasted away to where now my bone is protruding which is causing pain. He said it is not lyme's related and that I can no longer go barefooted until we find out whats wrong. He advised picking up some creatine to try to build muscle back. I love going barefoot bc shoes hurt that foot now.

My neuro did a full body emg all normal except for Ulnar neuropathy at the wrist on my right arm which explains not being able to pick up my cookie the other day and ive been dropping everything.

I have a week with a neuromuscular specialist at MSU next week.

Whatever is going on Lyme has def caused it...I know CIDP and MMN has been known to associated with lyme..anybody with CIDP or MMN care to comment...I have a normal needle EMG so I think that cuts out those for me but I heard it can move very slow and only show NCV damage first.

Any help would be awesome peeps..

And to any hypochondriacs reading this....I DO NOT have ALS nor do i think I do..just a side note lol...

Hope everyone is well.

jay10434
05-07-2010, 01:26 PM
Best wishes to you for your continuing recovery. -- JK

barry7515
05-07-2010, 01:32 PM
Kelly, keep on getting stronger and better. I am so glad that you are feeling better and that you are playing volleyball and exercising, it is important for not only the body but for the mind too.

I have no advice for you, just encouragement. :):)

hal9350
05-07-2010, 03:03 PM
I'm very glad to hear that you Lyme treatment is working so well for you! That is almost miraculous considering how poorly you were doing and how you were progressing before. What a relief that they found a good treatment. I hope your remaining problems clear up soon. It's great to get some good news around here, thanks for keeping us in the loop.

melody9837
05-07-2010, 08:34 PM
So glad to hear you are improving! You are blessed to have done so well on your Lyme Treatment!

kelly11016
05-08-2010, 08:14 AM
Thank you for all your kind words. It continues to be slow improvement but I am improving from not getting out of bed to playing volleyball and riding motorcycles again. I am praying to God that I will be fully well in a month so I can do my annual stunt show with my stunt team. This foot has to get some tissue back. I am hoping to get them to do a charity stunt show for more awareness and more money for this disease.

I sincerely love all you PALS you have all been such an inspiration and a motivator for me. Its crazy to think just 3 months ago I had only briefly learned about ALS in school but never thought it would change my life for the good and the bad.

My life has changed so considerably. I live my life in the present everyday now. I play with my dog like I'll never see him again, I tell my loved ones I love them and reiterate daily what they mean to me, I say yes to every opportunity, and put my heart into every step I take and every breath I breathe. I always dreamed of living this way, and you PALS and CALS have helped me and if I died tomorrow I would truly have found what living really is and that before this I hadnt been at all.

Thank you guys so much and though I still have to be cleared from MSU I believe everything will be fine and I promise to every one of you...I will become the best doctor I can and remember everything I have learned here and I will do my best to whip this monster's butt.

You guys have given me a whole new passion and excitement to start Med school next year when before I was questioning whether or not it was my calling by far I got my answer. I sit here in tears because I love each and every one of you so much. I think I found that lost passion.

Love,

Kelly

barry7515
05-08-2010, 08:31 AM
Kelly, a volleyball playing, motorcycle riding, stunt woman doctor who understands ALS, loves dogs and is also gorgeous ;-), what more could any patient ask for? I hope that you do go to medical school, you'll make a great MD.

kelly11016
05-15-2010, 03:50 AM
Guess now I'm a dirty fibber..lol

My Emg was abnormal today at Mary Free Bed. Dr. G found some fibs in my leg and arm. Ncv was normal but a significant difference between left and right side for motor and sensory nerves. My new tap showed infectious inflammation and she referred me to their top infectious disease doctor tomorrow. She said its not motor neuron disease but said its axonal damage. Whatever that means. She said I have mononeuromultiplex..?

Needing encouragement from the strongest people I know..my clinicals were good except brisk reflexes no pathological reflexes. My doc is one of the leading als specialists in the country and has worked w mnd for over 20 years..when she says no als I have to believe her..I guess I'm just down but at least she gave me gabapentin. She wrote cidp on my chart pending the antibody testing.

Love kelly

rob9920
05-15-2010, 12:57 PM
Well, from what I have read, Lyme usually doesn't affect your EMG test results a great deal, it can affect it to some degree. Since your actual test results are officially still normal, just a minor difference from one side to the other, I probably would not worry to much. And fibs are just twitches, and you have had those all along which is a common symptom of Lyme. And Lyme is an infection that gets into your CNS -> That could explain the positive test result.

From what I have seen from doctors who arn't familiar with Lyme and what symptoms it could cause. (Which is most), you could easily get spun around from Dr. to Dr. with possible diagnosis of this then that then maybe this.... I have been down that road.....


When I went to my GP a few weeks ago with my latest new symptom, he said it could be a brain tumor.... Except I already had a MRI that was normal….I look it up on Dr. Google, it could be a brain tumor, a seizure, or some sort of psychiatric disorder.... I look it up on the Lyme forum, and low and behold, it's very common with Lyme... Go see my Lime ID doctor, and he says excellent! The antibiotics are working! This is just one example.... I have several others....

P.S. I was put on Lyrica and then on Gabapentin on separate occasions from my GP. They didn't do anything for me. My ID doctor told me to get off them as they don't really help and those meds can cause you additional symptoms.... And you don't want that.... The ID Doctor will treat you for Lyme based on your symptoms.... You don't want the meds affecting the symptoms…

What does your Lyme Dr. say? And is he a well experianced Lyme Dr.? I would say one needs to have treated at least dozens if not hundreds of people with Lyme before one truley gets the grasp of this disease. And be careful of the Top ID doctor.... Ask him how many people he has treated for Lyme, because..... You do have Lyme!

wright4499
05-15-2010, 03:11 PM
Kelly

Axonal damage simply means a peripheral neuropathy (a nerve is made-up of a bundle of axons . . . think of a nerve as a rope and the axons are the individual fibers that make-up the rope). Lyme certainly damages peripheral nerves, which is the main mechanism behind the neuro symptoms. I'm not at all surprised with your EMG.

Mononeuritis multiplex is simply damage of more than one nerve from separate areas of the body (e.g. damage to nerves from a few parts of your leg or damage to nerves from your leg and arm, etc.). Again, it's a peripheral neuropathy and is in no way related to MND. CIDP and MMN are in that category and are treatable.

Hang in there and know that you are in good hands and will be given treatment for your condition. Take care.

kelly11016
05-15-2010, 04:31 PM
Thanks Buddy and Wright,

It was quite odd the fibs being so patchy like she said it is seen in CIDP however I tested negative for the antibodies :( That wouldve been great to be on iv antibiotics and ivig..Anyway the ID put me back on IV Rocephin 2 grams a day this time. He said I am the first person with Lyme that he thought seriously had it. lol..

I wanted to know Wright though..what can I do to help the nerve to regenerate or get better. She said it is in the process of regenerating and healing right now but is there a way I can help it along or what not to do.

She was not concerned about the fibs at all..I thought I was a goner...but she was so unconcerned that I am starting to feel better about being dirty :) At least now people know hello I wasnt fibbing (pardon the pun) about my symptoms.

Also Wright why are my fasciculations almost non existent but the fibs are just now showing up...she says she expects to see PSWs soon..wtf.. help a sister out with this mess. :)

wright4499
05-16-2010, 07:12 AM
Hello again Kelly

Consider yourself lucky that you don't have to do IVIg (it is incredibly expensive . . . tens of thousands of dollars . . . Rocephin is a bit cheaper than that). You don't have CIDP. You have Lyme's, which is what is causing your neuro problems. Again, it sounds like you're in good hands and that you're getting the treatment that you need to recover.

Speaking of recovering: there really isn't much you can do to speed the process of healing your nerves . . . but being too active will certainly slow down the process. I had to stay out of the gym for nearly a year when I was healing (and I was a gym rat). You can be active but it should not be anything close to strenuous. Certainly now that your are actively denervating, any activity should be at a minimum.

You probably do have fasics but I bet they're very small and you're really not noticing them . . . and sometimes they're absent or minimal with peripheral neuropathies. Fasics are still a bit of a mystery and no one definitively knows the mechanism by which they form.

The key right now is patience and being optimistic about the day you will make a full recovery. Take care.

kelly11016
05-17-2010, 02:49 PM
Will I renervate now or what? How can she tell that I don't have ALS from my emg when I see other young folks get the diagnosis with fibs in more than one limb? I trust her just curious...she was very adamant when she handed me my report.."This is not ALS"..she is supposed to give me a firm diagnosis next week being that my antibodies testing is still out. I thought it was all in but in her email she said she is missing 2 more tests and the antibodies for CIDP are still out.

wright4499
05-18-2010, 09:07 AM
The reason your neuro is confident that you don't have ALS, is because the EMG indicates you don't have it. You have said previously that you have slowed conduction (which indicates a loss of myelin) and slowed conduction does not happen with ALS (it might be seen in later stages of ALS but not in the beginning stages). I bet that the EMG is also showing that your sensory nerves have been affected, which again points away from ALS. I'm also fairly confident that your clinical exam doesn't indicate ALS.

You will reinnervate and I'm sure you already are. As soon as they get your Lyme's under wraps, you will stop denervating and demyelinating and then you will be on your way to recovery. In the meantime, keep a positive attitude.

kelly11016
05-18-2010, 11:18 AM
I was more positive when my conduction was slow..the ALS doc came in and debunked that in 3 seconds flat :) 2 techs found slowing and the Doc said no slowing...said its all axonal. She just showed me that all my motor and sensory nerves were slower on right than left but not enough for demyelination. I'm trying to be positive. Just scared..James said that she told him I am already reinnervating. But I guess whatever happens will happen..i still have all strength in all my limbs and no worse atrophy. I wore sneakers yesterday for the first time in awhile and she said I cant play any contact sports. Which upsets me bc I was looking forward to playing hockey while here in Michigan yea right..lol

Sorry I have alot of questions because she wont answer any questions until she gives an official diagnosis next week after my antibody testing comes back.

Will my muscle come back from atrophy after reinnervation? She said she is sending me over to ortho to get fitted for specific insoles for my feet so I presume it will not but one can hope.

kelly