Looking for input

[robbeaux]

Hi,
I have come across this board quite a few times in researching my physical and labatory symptoms that have yet to be diagnosed. I am quite impressed with the level of knowledge diplayed here and am hoping for some direction or ideas.

I am a 42 year old male who has suffered some muscle weakness in both my upper and lower body for about 1.5 years.

I have moderate muscle stiffnesss in bothe legs and shoulder area.

I have mild twitching in all four extremities

My CPK has hovered between 800 - 1400 during this time. I am not taking any statins.

My last EMG showed some abnormality in one leg that could not be reproduced in other muscles

A muscle biopsy showed mild hypertrophy

I have been on prednisone now 20 mg daily for 4 months with no relief

I was prescribed quinine for one month with no relief

I have recently been prescribed 2 mg tizanidine for muscle spasms with no relief

I aplogize for the length of this post and hope someone can give me som direction

 

[Moonmark]

Hi Robbeaux--

I assume that since you have had an EMG, that you have seen a neurologist? what did that person diagnose you with? myositis can cause those type of symptoms and elevated CPK. were you seen by a neurologist specializing in neuromuscular disease? did that person conduct the EMG? have they recommended repeating it?

I do not have answers for you, but wonder if you have been seen by someone specializing in ALS or related diseases. I think with muscle weakness in upper and lower body and only abnormalities on EMG in one limb would point away from ALS, but hopefully someone more knowledgeable can comment.

If you have not been given a concrete diagnosis, I would recommend seeking out another opinion from a neurologist who specializes in ALS at a well-regarded hospital. you can visit the MDA web site and locate a clinic there.

Good luck-

Sandra

 

[robbeaux]

Sandra,
Thanks for your reply!
To answer your questions.

I was refered to a nuero through an endocronoligist that my GP sent me to.
The Nuero did not diagnose me at all.

The orginal thought was that I might have polymyositis but all lab work plus the biopsy failed to prove that out. Aslo I understand that the predisone would have some effect on my CPK levels.

I looked on the MDA website for a clinic that specializes in in ALS and there is none anywhere near me. I will try and contact the local MDA office for more info.

Right now my diagnosis is an undetermined muscle disease. I understand the complexity of this but the monthly visists that result in trowing mud on the wall to see what sticks is taxing.

 

[crystalkk]

Hi,

It really sounds like they are thinking a muscle disease (which could be one of so many different diseases) not ALS... Which can take along time to diagnosed as well...And I totally understand your frustration!
Do you know what the results of your last emg exactly were? The hypertrophy in your muscle biospy doesn't sound like ALS at all either.
Is your weakness more proximal than distal?

 

[tattooguy8617]

Hey Crystal,

Does distal or proximal make a difference?

 

[Northern Dancer]

Tattoo Guy,

Do you know the reason that the doctor has prescribed the prednisone? It usually indicates something inflammatory going on.

Northern Dancer

 

[Northern Dancer]

Oops, I meant to address that question to Robbeaux.

ND

 

[crystalkk]

Tattoo Guy,

Most Myopathies effect the proximal muscles.

 

[tattooguy8617]

Crystal,

So proximal muscle issues (weakness) point away from ALS?

 

[crystalkk]

Tatoo Guy,

I don't know all your story or symptoms ( I'm not a doctor). But Robbeaux story sounds like they are thinking a myopathy which mainly effects the proximal muscles....

Have you seen a dr about your symptoms? There are sooooo Many things that need to be ruled out before they will even mention ALS.
What tests have you had so far?

 

[robbeaux]

Northern,
My doctor prescribed the the prednisone as a course of treatment for what he thought might be polymyositis or another inflamatory myopathy. Started 40mg a day for a month with no effect ( in the way I feel or my CPK levels). Have worked down to 15 mg a day currently and looking forward to ending treatment. I think we have specifically ruled out myositis.

Weakness is mainly distal (Shin muscles and forearms) but also also around the shoulder girdle. Going to the doctor monthly its hard to gage change except for new areas ie. my neck

 

[Miss]

Robbeaux,

Doctor's prescribed prednisone to my husband back in December when they thought it was a brachial plexus injury. It had some positive effects for a very short period of time. Possibly he had something else as well as ALS. Like everyone says, diagnosing ALS is a matter of ruling out everything else.