Reasons for my fatigue and progressive muscle weakness

[Naeco]

Hi guys,

I was here about a year ago looking for reasons for my fatigue and progressive muscle weakness. I went through all the tests and nothing showed up. I was eventually diagnosed me with Chronic Fatigue Syndrome. I never really accepted it and kept searching for answers while the fatigue and weakness kept getting worse. I refused to give into the symptoms so I kept pushing forward and I eventually developed chronic tendonitis in both legs. That was kind of a turning point because I went to a physical therapist and after the initial exam he recommended that I see a neurologist. He said I have several nuerological symptoms and now I've noticed muscle atrophy in both hands. I stopped thinking about the ALS stuff a long time ago so I guess I've been overlooking the changes in my hands. That's what started getting me worried about ALS again. I remember that being a big part of the puzzle.

The stuff with the physical therapist just happened last week so I haven't been able to see the neuro yet. I know I should probably wait until after I see the neurologist before I even think about this stuff again but the atrophy really has me worried. But there's one thing I was really hoping that someone could clarify for me..... for several months now, my fingers have started curling up like I'm making a fist without even trying. It's also hard to straighten my fingers. Does this happen with ALS?

 

[Chris_b]

Re: Back to where I started

Hi im pretty new here and im still learning a lot about this desease, i can however say i am getting the same problem in my right hand. its quite often bad in a morning. I was diagnosed 2 month ago with mnd.
I dont want to worry you but the hand thing is exactly the same as mine. I was going to ask about any advice for stopping my fingers curling at night. its getting very hard to staighten them.

 

[Naeco]

Re: Back to where I started

Thanks Chris. That helps to know it might be related to the muscle atrophy.

I just realized this was posted in the main discussion room. Sorry, it should be in the "Is This ALS" forum if anyone can transfer it? Sorry about that.

 

[LizT]

Re: Back to where I started

Chris B- you can get braces for your hands or you can roll up washcloths and hang onto those while you sleep. hope this helps.
Naeco- im sorry. i dont have an answer for you, but im sure someone here will. good luck to you

 

[Naeco]

Re: Back to where I started

Liz - Thanks for the kind words. I know there probably isn't much that can be done or said until the EMG is repeated. Fortunately, I was able to get an appt scheduled fairly quickly so at least I should know more about it soon. For now, I just keep looking for other reasons for the atrophy. I never paid attention to that sort of thing after they ruled out ALS last year and now I can't understand how I missed it. It's pretty obvious. I just thought I was past this....

 

[LizT]

Re: Back to where I started

Hang in there Naeco. Youve come to the right place. We are all here to help you through this, so dont think you are alone.
I will pray for you that its not ALS. I will also pray that you find peace with whatever it is that you have going on.
Be strong

 

[Naeco]

Re: Back to where I started

What are some of the questions I should ask my neurologist? The atrophy is worse in my right hand but the left is also showing obvious signs of atrophy in that same spot, below my pinky. I just want to make sure I use my appointment time wisely and ask the right questions. Thanks!

 

[Al]

Re: Back to where I started

Here's what my OT made for me to help keep hands straight. I'd wear them at night.

AL.

 

[Naeco]

Re: Back to where I started

Al, thanks for sharing. I'll keep that in mind The curling hasn't been bothering me too much, it was just the unkown that had me worried. Still hoping the neurologist can find a good explanation for things.

God Bless!

 

[Tokahfang]

Re: Back to where I started

I also gave myself tendonitis trying to push through muscle weakness, as well as messing up my hips. Whatever it is you have, clearly it affects how your muscles are handling things, so I hope you take that as the "don't push it" message it is. I thought I was tough... nope, just dumb, heh!

 

[Naeco]

Re: Back to where I started

Hi Tokah, I've been guilty of that too. Unfortunately in this situation, I just took some really bad advice from some very smart doctors. Now they're refusing to see me again because they realize they missed something. But yes, I'm trying to learn to slow things down....

 

[Naeco]

Re: Back to where I started

I had my appt with the neurologist. He said he wants to repeat some of the tests from last year... both Myasthenia Gravis and the EMG. I also have a Brain and C Spine MRI scheduled. I'm glad that things are moving again. It's been really hard not knowing why each day seems to be a little more difficult than the last. The doctor had me do some basic tests like trying to stand up from a chair without using my arms... that's how I found out that I couldn't do it anymore. It's been hard to accept every time something like that happens.... I don't know if there's something I'm doing that's making things worse or what? Is there some type of treatment that could be making it better? It's hard being in the dark about these things. But one thing I've been very fortunate about is how quickly the testing is scheduled. I have the MRI's next week and then the EMG the week after that. They said I should get the results in about 6 weeks.

 

[Al]

Re: Back to where I started

6 weeks seems like a long wait but Arizona is becoming a retirement state so maybe things move slow there. Hope you don't mind my levity but you need your sense of humor during this trying time. Seriously though, 6 weeks is long. Is that the first apppointment the Neuro has? I always got my EMG results the same day if thee Neuro did it himself (which is better). If a tech. does it it takes a week or so. The MRI results are usually a week, here anyway. Good luck anyway and try to relax. It could be something treatable.

AL.

 

[Naeco]

Re: Back to where I started

Hi Al,

Haha, yes things do seem slower in AZ.... I'm originally from NJ so it's been especially tough on me

I thought 6 weeks seemed pretty good because they usually have an 8 week wait for new appts.... This was my first time seeing this Neuro. I'm glad that he's going to be the one doing the EMG. At the Mega Clinic last year, it was done by someone I had never seen before. It was a disaster because they scheduled me for a stress test for heart earlier that day and I wound up collapsing on the treadmill.... they reverse the medicine/cryptonite but I still felt like crap for the rest of the day. By the time I got into the EMG, I was totally exhausted and the nurse said the EMG guy was running late so I could take a nap if I wanted. Five minutes later I was out and I woke up with the guy getting those big needles ready for my test... didn't wait for me to shake off the fog or anything, he just started going to town on my leg... then he stopped when he got to my knee and said there was no need to continue. Then when I got the test results, the Neuro said it was clean and they were ruling out any type of nerve issues. When I asked what might be causing my weakness she just said that if I was 90 yrs old they might just tell me sorry. That was my last experience with a Neuro until this last appt. It was like watching "Reno 911" meets "Life in the ER"

The good news is this one seems to be off to a much better start.

 

[archie]

Has your neuro ruled out carpal tunnel syndrome?