Familial ALS?

[lydia]

Princess,

So I googled neuromyotonia (couldn't help it) and it just amazes me how all these neurological scenarios sound so much like each other. You said your symptoms are getting worse? What is happening now? Do your toes still act up? Mine did the same thing you described earlier but have quieted down..I am happy you got a dx but wonder about your neuro's comment about some cases "turning into" ALS...you had an EMG, right? Does neuromyotonia have a characteristic showing on an EMG?

I saw a description of something called myokymia (continuous fine vibrating muscle movements which apparently can be seen) when reading about neuromyotonia and wondered how it was different than fasciculations. Anyone know?

Lydia

[abitofaprincess]

Hi April

Thanks for your reply. It is also known as Isaacs Syndrome and there is some info on the web. It is rare, and the main symptoms are twitching/fasciculations, muscle stiffness, sweating and sleep problems (all of which I am experiencing).

Kind Regards
Cleo

[abitofaprincess]

Haven't posted for a while, and recently had my 6-monthly appointment with my Neurologist. My symptoms have gradually worsened, and I'm now trying another Epilepsy medication, though I'm not hopeful. I now have more widespread and stronger twitches and cramp, lots of back pain and weakness in both legs. It's really hard when the medics just keep offering more medication, when you feel that normal life is now a thing of the past. There's so much I can't do anymore - a doctor recently asked me if I could touch my toes and I laughed - can't even remember when I could do that! If this Neuromyotonia is benign, it certainly doesn't feel very benign! I am considering going private for a second opinion - any advice?

Kind Regards to all
Abitofaprincess

[lms9258]

Hi abitofaprincess,

I was just reading your post about familial ALS. My mom was diagnosed with Frontal Lobe Dementia in May 2007. This past July (2009), while seeing her neurologist for a check up, she mentioned (and showed), muscles twitching in her arms. He immediately suspected ALS, and referred her to the ALS Center in our city, as he felt that he was not qualified to treat her for this.

Anyway, I am her main caregiver, and am going today to see my GP, as I have at least 8 symptoms of ALS. I have had them for quite some time, but just blew them off because I didn't know the symptoms until my mom was dx'ed.

I recently read in some ALS literature, that familial ALS occurs about 5%-10% of the time. In addition, "...if a mother or father has ALS, the child would have a 50/50 chance of getting the gene, but still not necessarily develop ALS.

Needless to say, I am scared silly! It would be really horrible no matter what, but I am only 45 years old, and will feel especially ripped off if I have it because I have a spouse, 7 siblings, 6 children, and 4 grandchildren, all whom I love dearly; Not to mention my wonderful mother.

Hope and strength for us all,

Laura

[abitofaprincess]

Hi Laura

Your Mom sounds as if she has the same symptoms as mine had. How old is she? My mother developed hallucinations, etc eventually. I understand how worried you are. I am frustrated, as my Neurologist is bent on giving me lots of drugs to treat my symptoms, but doesn't seem bothered about why I am having these symptoms - he seems very vague, and has told me to come back if I get swallowing problems or slurred speech - not very comforting! I'm only 47, with two sons and a husband (and a labrador).

Take care
Cleo