Question about twitching and progression

[nprr]

I'm still working towards a diagnosis. Had my appointment with the neuro last week and asked him about some symptoms which he dismissed as trivial. They don't seem so trivial to me so I thought I'd ask for input from this forum who I believe know and understand more about the disease than the doctors.

Twitching-I have diffuse twitching over most of the body-the kind that I can feel. When it starts it rarely lasts more than a minute in one place. Most of it is in my shoulders and arms where I also has the lighter twitching that I can only see. I noticed that the twitching can be triggered and be stronger if I have my body in certain positions such as resting my forearm on the desk while typing, having the elbow on the car armrest, laying on my left shoulder, etc. And some of the twitching are real thumpers. It's almost as if the nerves are inflammed or irritated and I'm causing twitching by compressing them. Likewise, when I remove the pressure, the twitching typically stops. Has anyone else had this experience?

Progression-my symptoms started 9 months ago with a right finger drop, hand/wrist weakness and some arm weakness. All seemed to happen all at once over a period of no more than a week. 4.5 later an EMG showed denervation in the arm and delayed conductivity. I noticed mild atrophy at 5-6 months. Since then, the atrophy hasn't gotten worse and there has been no decrease in strength-except a little in the wrist-since onset. I know that ALS can move slow but does a near lack of strength decrease progression make sense? Even in the 2 months between neuro visits there was no change in the clinical strength test.

Thank you for reading and thanks in advance for your help.

 

[vickim]

Do you have a follow up appt with the neuro? If I were you since there seems to be no real progression to wait 4-6 months and give things a rest.

See if your symptoms change and keep a journal of when, where, how long and what you were doing when twitches or symptoms start and stop. Write down any changes too. Then if and when you go back you have a time line to show the dr. Whether or not it is als or something else that progresses at a slow rate 4-6 months won't make that much of a difference.

There are several people that have been waiting years for a diagnosis. It took 5 years for mine. Sometimes a break from all the poking and prodding can shed a new light on things. I wish you peace and strength.

 

[vickim]

Sorry my post went to moderation and will show up later after the moderator approves it.

 

[notme]

HI

This sounds familiar to me for some reason.

What you describe almost sounds like you've got a pinched nerve somewhere---and that can happen anywhere from the c-spine down the hand. Lots of areas for them to become trapped.

The neck, shoulder elbow and wrist are the most common areas.

What has the doctor said? ON EMG, a pattern of denervatio and renervation is seen--reduced conductivity (I'm assuming you mean on the NCV portion) is usually a GOOD sign and points away from ALS. But loss of function in ANY body part-- (the 'finger drop') isn't normal--even if it's a trapped nerve in the wrist or elsewhere, it needs fixed.

Have they suggested you see someone else?

 

[nprr]

Thank you, vicki and notme.

Probably sounds familiar as I have posted here before albeit with a different question. My challenge is that I'm seeing an ALS specialist and he appears to see nothing but ALS. He just gave me what sounded like a Probable ALS diagnosis without completing the rest of the criteria/testing required for one. When I ask questions about symptoms that may point away from ALS they are immediately dismissed. I just don't trust him. So I turn to this forum for input and opinions to help men fill the gaps.

Luckily he ordered the additional bloodwork and MRIs so hopefully that will yield some info. I like the idea of documenting progress and started doing that last night. I frequently rely on my memory but there's already too much to remember.

 

[ottawa girl]

Sorry about the probable diagnosis. Are you going to seek a second opinion? If you lack trust in your physician, I would urge you to get a second assessment. It's vital to trust our caregivers and to know they hold our best interests at heart. In my case, the left pinky stopped working. Then intermittent hand cramps. I saw my GP about these issues some 16 months after first symptom. The strength in my entire left hand is now pretty much nil, but this has occurred over the 12 months or so. The atrophy was noticeable last year at this time, but now it's really obvious.

Should it turn out to be a definite diagnosis, we are here to tell you there's plenty if life worth living!

 

[Grateful]

I will second Elaine's suggestion; if you feel your doctor is pushing you to one diagnosis and ignoring the differential diagnoses then get another doctor. In the meantime my fingers are crossed for you

 

[nprr]

Thank you, again! Still have some symptoms including minor improvements that are mysteries. Hopefully the additional MRI's will show something as my neck is bothering me more and more these days.

Most of all, thank you for the kind wishes and support. It's really helping me get through this tough time.