Eight Years Later and No Diagnosis/Guillain-Barré syndrome?

[rosales20]

Hello,

My name is Manuel Rosales. Sadly, my brother Douglas Rosales died of ALS two years ago. He was diagnosed at 26 and died at 32. Of course, the idea that I might have this dreaded disease always lingered in my mind.

About eight years ago I noticed some twitching on my left or right triceps. I can't remember exactly which one. I sort of panicked, but I did not seek any medical help. For the the next few years I had very little twitching. In 2006, I was seen by a neurologist. He basically told me that I was crazy and that everything was in my mind. He did a nerve conductivity test and some blood work. Everything was fine.

However, for the last two or three years the twitching has greatly accelerated. I have never had any atrophy until now. The muscles around my ankles and shins are smaller and by buttocks are smaller. Also, I never had tongue twitching until now. The twitching used to only take place in one area at a time. Now, multiple areas twitch. I am slurring my speech a little. I also get cramps on my calves. Overall, I have weakness in all my limbs.

Naturally, my wife is in denial and thinks that I am crazy because I still have a lot of muscle and look better than most. This is because I used to be a gym rat. However, I have not worked out in 4 months.

I was seen my the same neurologist about a month ago. He ran another nerve conductivity test and it was ok. However, he did tell me that I tested positive for an antibody. I don't have my notes so I can't tell you which anitbody it was. I recall getting on my iphone and searching for the antibody. I had several results for Guillain-Barré syndrome. I honestly hope that I have this. Of course, I hope that nothing is wrong at all.

Is it possible to have symptoms for this long and not be diagnosed? I did three sets of 15 push ups yesterday. I can still talk well and run.

I am just really confused, frustrated, and frankly, scared. My neuro requested for me to go see a specialist. I will most likely go to USC or Irvine (California).

Can anyone lend some advice?

Thanks

 

[rosales20]

I am 36 years old.

 

[vickim]

I am not a dr but my guess is after 8 years you are still doing pushups and walking you are safe. Do you have an illness ? Only a dr can tell you that. I would make that dr appointment and make a list of questions to ask the dr.

 

[rosales20]

Vicki,

Thanks for responding. The symptoms are actually worst. I shake a lot when I do push ups. Is it possible to have slow progressing ALS or something else. I don't want to be sick. I just want answers so that I can move on with my life.

 

[Xfile1966]

Manuel, yes there is slow progressing ALS. I'm not a doctor but I am also 8 years in as well trying to figure this out. But like Vicky on here told me, after 8 years and still walking - on toes, heels, standing on one leg or another even with noticeable atrophy (and in my case 3 EMGs that were mostly normal) It's probably not ALS.

I have atrophy, weakness and twitches. When I am tired or stressed it's MUCH worse. I also have MAJOR muscle pain with any use.

My neuro suggested I might have a mitochondrial disease or MD. Even MS. - Maybe ask your doctor to look for these illnesses?

You might also ask to be tested for Lyme disease as it seems to really mimic ALS. (A lady I know just had her ALS DX reversed for Lyme). Another lady spoke at our church just last Friday about her experience with Lyme - she was almost a vegetable before they figured it out - and it took 60 doctors to do so!

(I still can't shake the ALS fear myself so I am seeing a specialist at Emory in Atlanta in Feb.)

I Hope visiting a specialist helps you feel much better. Be sure to write down all of your questions and fears so you won't forget to ask!

 

[rosales20]

Xfile1966,

Thanks for the advice. As soon as I get the authorization to see a specialist I will do as you say. Today I ran four miles with my wife. The atrophy on my shins and ankles, the twitching, and my tongue has atrophy. I just don't get it. I asked my brother if he had symptoms way before diagnosis and he said no. He deteriorated really fast. Thank you for responding.

 

[Kosmoskatten]

Since you are not specifying the antibody it is hard to have an opinion.

However slow progression and antibody positive could be Myasthenia Gravis. MG shares the same antibody marker as GB. But I am only a med student, and certainly not at liberty to say.

It sounds very strange that your bloodwork tested positive for antibodies and your neurologist did not speak to you more about this. It sounds like a good plan to see a specialist and get more information.

This does not sound like ALS. If you can still run four miles, you should not worry about that.