Another muscle biopsy question

[elliekusa]

Hi everyone,

Three weeks ago I went to the VA Neuro and he said he wanted to get a muscle biopsy ASAP and then see me in 3 weeks. Well, I see him tomorrow and thanks to the bureaucracy of the VA...still no muscle biopsy!

At my last appointment I asked if I should be worried about the twitching and he told me they (the team) were worried about "all of it". He gave me very little info about what muscle they would biopsy or when. He did prescribe a wheelchair (for longer distances).

So, I need some help before I see him again tomorrow. He mentioned something about Lactate? testing and something that starts with an M? Milose or mil...something. Does anyone have any ideas?

I have brisk reflexes, babinski, spasticity, twitching/facs, some muscle atropy and increased weakness with horrible fatigue.

I won't bore you all with the entire range of symptoms, but I do have both lower and upper motor neuron signs.

What should I ask the doctor tomorrow? My MRI and cat scans are clear. My labs as far as I know are all okay. They have not done a Lumbar puncture, but they told me they did not believe I had MS.

Any guidance would be very much appreciated.

I am getting weaker by the day.

Ellie

 

[CindyM]

Hi Ellie- I am sorry to hear you are getting weaker. The bureaucracy is nuts, isn't it? I wish things could be easier! Cindy

 

[elliekusa]

Cindy, thank you for your kind words. I am trying to focus on gratitude for the little things.
Today I am grateful that I was able to walk my dog a small distance...even though now i am in bed. I am grateful that my dog seems to "sense" when I've had enough. I guess it must be when I start tripping over bushes or I look like a bobble head when i walk.
I am grateful that I can still swim in the pool, even though I need help getting out. I am grateful that I can drive....my doctor almost pulled my driving privileges last week.

So, until I get some sort of diagnosis....I am just trying to remember gratitude. I am really glad this forum is here....You are all awesome.

Ellie

 

[Al]

Hi Ellie. It's tough to do some days but a positive attitude does help. Good luck at the doc's.
AL.

 

[tmasters]

You didn't mention an EMG, have you had one? This is a very important test for ALS dianostics.

-Tom

 

[lovelily]

Hi Ellie!

I hope you were able to get every thing sorted out for the muscle biopsy. I had two. The one in my lower thigh was more painful than the one in my arm. If you get one in the leg I would be asking for a pair of crutches...even if it's just a few days to hobble around. The one in the arm was like a mega tetanus shot.

Let us know how you make out.

take care
lovelily

 

[elliekusa]

Emg

You didn't mention an EMG, have you had one? This is a very important test for ALS dianostics.

-Tom

Yes, I did have an EMG last October of my left arm. At that time there was no evidence of denervation. They were looking for problems from my neck since I do have some cervical issues. They also did the NCV. They said there were some "mild" changes but nothing to worry about. That was before things got so bad......so we'll see. I have lots of questions for the neuro.

Thanks for your help.

Ellie

 

[elliekusa]

lovelily, Did you get the results of your muscle biopsy?

 

[lovelily]

Hi Ellie.....Yes, One showed acute and chronic denervation and the other showed myopathic changes. The denervation was in the leg so they did an 'EMG' of the opposing part of the body, and found some denervation that was acute and chronic, with axonal involvement, positive sharp waves, and fibrillations.

I am waiting for a call to be seen by a neuro muscular disease specialist because I have wasting (thinning) in various parts of my body, and the usual weakness/fasciculations that go with it. My grandfather was lost to this disease.

Take care....I wish you the best.

lovelily