ALS concerns & questions

[Whitetiger]

Hey All,

This is my first post. I saw my reg. dr last Fri for concern with weakness/stiffness in my legs. I failed the test he gave me with a -6 he said. ? My dr said it could be a muscular disease and referred me to a neuro whom I have an appt. with. My legs have gotten weaker over the last 2 years along w/other symptoms(balance, fatigue, dizzy, leg/arms jerking...).

I can't walk very far most days without extreme fatigue. It started in my right leg first. I was diagnosed w/Psoriatric Arthritis last fall w/is basically Rheumotoid A. I take weekly methotrexate injections but it doesn't seem to help much. My biggest concern is my legs. My dr gave me Viodin, it helps for the most part.

Could I have fatigue/weakness lasting almost 2 yrs, slowly getting more fatigued over this timeframe and still have a muscular disease? From what I read my symptoms would have gotten much worse, much quicker than they have if I had ALS.

Is it better to go to an ALS neuro specialist dr? I called my local ALS chapter and they said I should go straight for an ALS dr who has lots of exp. My reg dr referred me to a reg neuro. Any help is greatly appreciated! Thanks!

 

[trfogey]

As I told you on the other thread you opened, wait and see what the first neuro says before you start worrying about needing an ALS specialist. Muscular does not necessarily mean neuromuscular. That's what the first neuro will evaluate you to determine.

What makes you think that you might have ALS?

 

[Whitetiger]

Let's see...lower body fatigue going on 2 yrs. Harder to walk more than the last. Twitching/jerking in my arms and legs, mostly at night. Legs are extremly stiff and hips. Difficult to get up stairs, out of bed or out if a chair/car. Can't stand for very long. Swollen lymp node sometimes, difficulty swallowing. Trouble resting/sleeping becUse if discomfort in legs/hips and rt arm. Dizzy. Stiff neck. Fallen 4 times including down my stairs. Balance is off on some days. Nausea/dizzy for hours at a time. Exausted when waking up. Saw eye dr yesterday, no optic nerve damage but I do get blurry vision in left eye in evenings, thinks it's arthritis related dr said. Tremors in hands and feet sometimes. Failed bablinski test. Hyper reflexes. Can't walk with one foot in front if other without losing balance quickly....

 

[trfogey]

Very few (two or three) of those symptoms, as you've described them here, are characteristic of ALS and, of those that are characteristic of ALS, they are not exclusive to ALS. As I said above, that's what the first neurologist will attempt to evaluate.

Please try to relax, be patient, and let the doctors figure things out and don't search the Internet trying to anticipate what the doctors might discover. Medical information on the Internet, especially about rare diseases such as ALS, is poorly organized, oversimplified, and serves more to misinform and frighten rather than to enlighten.

Good luck.

 

[Whitetiger]

Will do. Thanks for the advice!