31 year old Update/Question

[CB1977]

Hello Everyone-

I have had some additional symptoms since my last post a month ago. I also have some more appointments set up.

-fatigue in my right hand when I write (mostly in the muscles around my thumb) and also in my arm if I am doing something like hanging a shirt up high or holding a cell to my ear

-My right leg sometimes just gives out for a second. This happens about 2-4 times a day.

-The indents in my tongue are getting progressively worse, my tongue doesn’t look as inflated

-I have twitching still everywhere, but also in my tongue. The difference is now I can actually feel my tongue twitching and can see it. It is not a quiver, it is a spasm in the middle.

-My voice is horse? I don’t smoke and I have had a few people say to me....did you have a rough night last night? Is this even a symptom?

-All of my other symptoms from previous posts are still around. Neck pain (front and sides) stiffness in back, not as much energy as before.

I have had auto-immune ruled out through extensive blood tests by specialist, only abnormal blood was CK level high (260)

I have an appointment with Cleveland Clinic for beginning of Jan.. Can someone tell me if Mayo is better than Cleveland Clinic for diagnosing these type of issues?

I also have an appt in beginning of Dec with OSU speech and Swallow clinic and with follow up with OSU neuro end of Dec.

What are some of the non-autoimmune diseases that can commonly mimic ALS?

Does anyone have any other ideas/input about any of this, I am in a positive mind frame telling myself that there is no way I have ALS/MND however I have had a few breakdowns. As long as I keep busy with work and family it keeps my mind off of it.



CB in Ohio

No diagnosed, symptoms started 6/08

 

[CB1977]

I always have my age going for me I guess, at least that is what everyone keeps telling me.

CB in Ohio

 

[wright]

Cleveland Clinic is as good as it gets. You'll be in great hands. Hang in there buddy. Don't let the "new" stuff get to you too much. As we've said, it can be explained by so many things.

 

[sdsyd]

CB- One piece of advice I can give you, that someone gave me and I DID NOT TAKE...make sure you are seing a neuromuscular specialist not a general neuro. I jumped the gun and took a cancellation...with a doofus.

Cindy

 

[CB1977]

Cindy- I made that mistake already but I am now on the right track. Thanks for the advice.
Wright- Thank you, my visit to Cleveland clinic isnt until Jan 5th and I made sure that is is with a Dr. that is an ALS specialists.

Thanks everyone for the support, I will give updates after my appointments.

CB in Ohio

 

[MtPockets]

Lets hope the visit brings good news. Glad you are going to see the specialist.

 

[rose]

CB, Did you let both institutions know that you'd be interested in a cancellation appointment if one becomes available (that is if you are interested) I'm glad to hear that you can get in, but once you've got the foot in the door, sometimes you can get in even faster. Good luck and let us know what you find out.

 

[CB1977]

Rose- I let them know and they do have me on a list. Thanks!