Has anyone ever started with fasciculations and cramps?

[guwainengle]

Has anyone ever started with fasciculations and cramps--- went to see an ALS specialist and had all the tests-- seen the specialist again.... And then been diagnosed at a later date... With the specialist originally saying both times it is not ALS? I am just curious to see how often an expert has been incorrect from the beginning. I have been tod that by the time the fasciculations start and the cramping exists-- there should be some abnormalities in the EMG or clinical finding if ALS is beginning to create reasonable suspission. I have been to many doctors and a well know expert in the field and they all say no-- but as we all know-- no one knows how one feels other than yourself.

G

 

[Sammantha]

Forst off i am a woman, all docs patted my head and sent me off with a prescription. It took a year of progression just to get to a neurologist. If you have been to an ALS specialist than you probably dont have ALS

 

[guwainengle]

thanks for the input-- I hope not -- my symptoms keep getting worse and more pronounced. But I hope every day.

G

 

[ltr]

Sammantha - your story sounds all too familiar! For a year the docs acted as if I needed to relax more. Imagine relaxing more when the exhaustion and weakness already make it impossible to carry on a day! Finally, a doc that I created a bond with, went for a muscle biopsy. I have been diagnosed with myopathy, but he had to send me on to someone else in the clinic for it. She happens to be one of those women who doesn't listen and just threw a script to me. I think some of them are like Dr. House, only in for a challenge.

 

[westjlittle]

G - I suffered cramps for about a year and a half before any other ALS symtoms appeared. At the time, I was very active. I was weight lifting and running. I would have cramps for no reason like when I was stretching. In my weight lifting records, I can also 'peaked' and then started to decline in my strength. I tried everything, Gatorade, vitamins; saw my doctor. No results.

Then I started to have slurred speech. At the time, I thought I had a stroke but with tests over a two month period; ALS was diagnosed.

Jim West

 

[pmbenb83]

Jim - My husband's symptoms sound like yours. He also lifted weights, but now can barely lift a 5 lb dumbbell with his right arm. He too had cramps for over a year and then the cramping started happening with the slightest movement. To turn the dial on the radio sent his hand into a spasm and would lock his fingers. Movement while he sleeps can send him jumping out of bed with leg cramps. Right now, he is waiting for a diagnosis from the UVA docs. We're still hoping for something treatable.

Take care.
Pam B.

 

[Alexandre]

interesting post. But seems like a lot of people had twitching and cramping long before weakness?

 

[LaurentCH]

my neuro at the swiss als-clinic told me that if the fascics were du to als they would have seen patterns of denervation and/or reinervation and psw/fibs in the EMG - even months prior to the onset of these symptoms. I think the cases of cramping and fasciculations for months and years who are later being diagnosed with als did not have an overall EMG with an als-neurologist. I have been told that with generalised fascics/cramps and a clean EMG (and a good clinical exam) I can be highly reassured that it is "only" the benign cramp and fasciculation syndrome. visit www.aboutbfs.com for more information.

 

[Alexandre]

Were you first diagnosed with BFCS?

 

[hopingforcure]

Just FYI, at least 3 of those people on this post DID not have ALS.. SO take that as a good sign. I had twitching first, but it sure came with a bunch of other stuff, super hyper reflexes, weakness, stiffness, spasicity, clonus, emotional liability, sure not simply twitching, hope that helps you realize that just twitching is not a sign of als..

 

[Alexandre]

Thank you hopeinforcure but I'm also having hand cramps :-(

 

[Zaphoon]

With BFCS, you can have cramps in any muscle (per my neuro). It is a nasty, nasty disorder but not known to take any years off of living.

At this point, why not shoot for a diagnosed that has the word "benign" in it? For that matter, PLS is benign and full of cramps. You can still be diagnosed with a motor neuron disease and not have it effect your life span with PLS.

You may just be lacking something in your diet that can make the cramps go away! You might try adding more magnesium or potassium.

It would be a very good idea to focus on your problems being caused by something other than ALS.

It can always be something else until it can't be anything else!

Zaphoon

 

[Alexandre]

Thanks Zaphoon, but it all is very weird
Twitching like crazy for 14 months and now bad hand cramps (ofcourse I read some stories here of patients talking about cramping for 1 - 1.5 year before weakness. What do you think, Are you being diagnosed?

 

[Zaphoon]

I've had 2 neuros tell me I have PLS; this in part was due to my developing weak arms on top of having weakened legs. The arms have gotten a bit better and it is now suspected I might have double frozen shoulder syndrome.

PLS is still being blamed for all of the other stuff I have going on. As of now, it is a differential diagnosis and is subject to change (for the better - my words).

Zaphoon

 

[Phil M]

interesting post. But seems like a lot of people had twitching and cramping long before weakness?

Indeed...mine was cramps, then speach. Had als for a year before noticable weakness. I'm 2 years into it now, and still have pretty good strength.