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brian84

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Learn about ALS
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ca
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somewhere
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somewhere
Its been some time since I posted here, as I thought I finally had a diagnosis but it seems things have changed again. I'll start by giving the backstory on how this all began. Summer of last year I started to experience muscle twitching, rippling, and weakness. I was seen by a gp who was very dismissive of my complaints and thought it was all in my head or anxiety related. The weakness became worse and I started getting bad cramping around the fall of that year. I was seen at the hospital er several times with no real answers. Eventually they sent me to an internist who tested my for all kinds of diseases and deficiency's but found nothing of relevance. I also had mri's and ct's that didn't show anything they thought would cause this.

Things continued to progress and I was sent to a neurologist. She repeated some of the tests and performed several emgs that she said indicated a motor neuropathy. after seeing me a few months she said I had a motor neuron disease and referred me to a hospital that has a unit that specialises in als. They gave me another emg that was done by a student and was said to be completely normal. I was given a diagnosis of cramp fasciculation syndrome. Shortly after that I was contacted by them to start clinical trials for an als drug. I found this confusing so I called them and was told that I had been rediagnosed with a variant of als and I should come in and talk to the dr. He told me that it was a mistake and I was fine as I had never had a bad emg. I made him aware I had 4 bad ones before I got refered to the clinic. he sent me to another dr for a second opinion.

The new dr looked over my info and said cramp fasciculation was impossible as it wouldn't have caused the damage shown on earlier emgs. He diagnosed me with post infectious neuropathy.

Later I followed up with the original neuro as I started feeling worse. she did another emg and said it was the same or slightly worse then the ones she had done the year before. She still believes I have a mnd. I am so frustrated and have no idea what to do or who to believe. Something is obviously wrong but no one seems to be able to figure it out.
 
Brian

I would be frustrated too! Last we heard from you in October - things were looking up for you. What changed between then and now?
 
I am so sorry you can't seem to get a consensus on what is going on. Sometimes it takes progression to get an answer. I hope they figure it out soon. When do you go back ?
 
Brian

I would be frustrated too! Last we heard from you in October - things were looking up for you. What changed between then and now?

I have had some worsening in my left leg and the muscles of my face. The clinic told me to follow up with the neurologist who sent me to them. She is aware the emg they did was done incorrectly so she repeated it. The results showed no change or possibly a very slight decline. She says it shows chronic axonal neuropathy whatever that means, She said maybe some type of mnd or variant, possibly something else. In the meantime as I have no diagnosis disability wont pay me. I have made no money since I got sick over a year ago and my family is stressed, confused, and financially ruined. I'm having a harder time coping with the circumstances surrounding my health then with my health itself....
 
I am so sorry you can't seem to get a consensus on what is going on. Sometimes it takes progression to get an answer. I hope they figure it out soon. When do you go back ?

I go back to the clinic in January for another emg. They really don't seem to have any interest in whats wrong with me though.
 
Oh, how I wish I could help you! I read about axonal neuropathy - some articles say it's a variant of Guillain-Barre . Others say to treat with immunoglobulin, plasma exchange or steroids. I haven't read that it's fatal.

Looks like it's a long toad to diagnosis - as you well know by now. I am so sorry for the effects on your family and I cannot imagine your frustration. Could your GP advocate for you, in terms of a disability application? If you saw a psychologist, do you think you could get disability for mental health reasons in the meantime? Those are the only suggestions I can think of.

I wish you the courage and to persevere.
 
Hi Brian,
Your story sound kinda like mine, a little. I was sent to an Als clinic in 2011. I've had two emg's done, both showing fasci only. The second emg showed fasci in more places then the first. Diagnosed with BFS.

She sent me to a third opinion after i was concerned it was going to progress into Als. The third opinion doctor told me my clinical and emg were both clean, which I didn't believe.

My hometown neuro also thinks this is unlikely too, but said he didn't do the emg. He thinks I have appropriate concern that I am progressing into a motor neuron disease.

I don't understand why the specialist can't see the issues like regular neuro's do or maybe they do? Doesn't make sense.

I was always afraid it was because I don't meet the diagnostic criteria for Als yet, not that they can see the disease in progress. (Just my opinion-in my case)

I'm so sorry you and your family are going through this, how very frustrating it must be for you all. I hope they figure it out and it's not mnd.
 
I understand limbo land is very tough on families. It is so hard to find a dr that will listen and work to find a solution. I ended up at a university hospital. I have to travel 2 1/2 hrs one way but he was the one who listened and felt he could figure it out. He didn't pass me off like the others did.

I didn't put all my eggs in one basket with depending on emg/nvcs. I have numerous and it tells me I have neuropathy in my feet. I had a muscle bio done. I wish I could give you advice or something that could help. I know there is such a thing as short term disability but I don't know what the criteria is. It might be something to look into.
 
my current gp and local neurologist have been very supportive in doing all they can for me. Unfortunately they can only do so much, the rest is up to the hospital. There is a department there that deals with patient concerns and I will call on Monday. Whenever I have spoken with them in the past they seem more concerned about covering up the mistakes they made then getting to the bottom of things. Lately I have been a bit flakey mentally which is scaring me a bit too. I was at the er for an unrelated matter a few days ago and could not remember my phone number or address, and Ive been having problems saying certain words. Things like that seem to be happening more often then not lately....
 
Brian -

Stress will do that! Very hard to concentrate when one is so distracted. Don't read too much into it... A few months ago, for a moment, i forgot how to spell my name when signing a cheque. Scary - but it was nothin 'cept maybe a brain fart.
 
I have those all the time. I can go from the kitchen counter to the dining room table to write something on the shopping list and forget what I was going to write down and it is maybe 10 feet distance.

It is worse when I am stressed or upset. Like Elaine said I wouldn't put too much into that.
 
Brian84, I'm sad to read of your added financial and family struggles. Something to consider... most large hospitals have a Social Services Dept. (some may call it Community Service) where you might get help with the bills piling up. And... they may have a volunteer counselor to help you with your disability application. Often it's not the many hoops you have to jump through but really the right hoops.
 
Al, I am so glad to see you posting again. Good post, I hope it helps Brian.
 
Thanks for the advice, I will speak to the hospital tomorrow about any programs or assistance they can offer. Have any of you taken quinine for cramps? did you find it helped?
 
You might ask your Neuro Doc about Baclofen. There's mixed opinion about it
but it does work for some. I take 60 MGs a day 20 - 20 - 20.
Sometime more (I hope my Doc isn't reading.)

I may get some flak about this but consider this;

Without any religious denomination implied. Some quiet night, by yourself, step outside
and clear your head of all thoughts. Look up at the stars and after a moment just say this
softly, “I need help. I may not deserve it but I need help. I need patience to endure.”

Then… be patient. If you’re not a patient person you can become one. In your situation
it will become the glue that ‘helps’ keep everything together now and all the tomorrows.
Do the above paragraph often. Hope it will work for you. I do it often. But… this time of
year don’t forget your coat. I have. 
 
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