Need Advice

[Riz]

I have been through a rough time the last 2 years. I became very fatigued right after a move to our new home and soon developed tripping while walking and a tremor in my right hand. I was diagnosed with Parkinson's a few months later. The medication the docs put me on kept getting stronger and I became useless and could not work. I was put on disability and Social Security soon after. I decided to go to the Mayo Clinic in December 05 and the diagnosis was changed. They said I had an Essential Tremor but I also had a lot of twitching in my legs and muscle stiffness that was left undiagnosed. I was removed from the Parkinson's meds and was able to return to work. The last 9 months have been so tough though. I can barely get out of bed in the morning. The twitching in my feet has now been replaced with cramping and very noticeable muscle wasting. The back of both hands have started to waste away, more on the right. I have divots on top of my wrists and very noticeable deep valley's where there was once muscle on the top of my wrists. My fingers on my right hand are starting to curl. The side of one hand has wasted away also. My tongue quivers like crazy and it has lost about one fourth of it's mass. Today I have trouble walking more that a few hundred feet without resting, my hands and wrists are very weak, my voice is hoarse, my hands and wrists are very weak, and I just plain feel terrible. I am so sick of doctors writing prescriptions instead of getting to the bottom of my problem. I was skeptical about ALS until my tongue started to waste away, now I am becoming concerned. Does my story sound like something others have experienced?

 

[Al]

Hi Riz. I don't want to scare you but I'd be asking for a referral to a clinic that specializes in Neuromuscular problems. Sometimes the regular Neuro doesn't see enough of a broad spectrum of patients to properly evaluate you. AL.

 

[Ivan Sims]

Hi, Riz:

You should not waste time, but get to ALS Clinic. At clinic like that, they see 40-100 ALS every 30-90 days. The average neurologist only has seen 2 ALS patients in 15 years. An ALS Clinic can get you real diagnose, plus a team is there waiting to help you.
Even if it is a couple hours away, it would be worth a drive!


Peace and Hope!


Ivan

 

[janf]

I agree you need to go to ALS clinic, I went to Atlanta Ga. I was going in circles until I went to them. They are great.

 

[cartman]

als ?

Suggest you get to a university hopsital that specializes in als. I spent months with local neuro who said my symtoms were just too confusing. I had many of the same you describe. I went to St Louis University. After three visits and many tests I was diagnosed with als. Being diagnoised does not change the outcome, but does help to adjust to your illness. If you go be sure and take your caregivers with you they make a better adjustment when they receive first hand knowledge. If you have als you and your caregiver are in for some rough days. With the help of loving caregivers you can develope a quality of life that is well worth hanging aroung and enjoying what you have left.

Best to you,

Cartman