Old 06-09-2016, 10:40 AM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2015
City: Buckingham
State: Bucks
Country: UK
Interest: Other
Posts: 6
hawkid is on a distinguished road
hawkid hawkid is offline
New Member (Say Hi)
Join Date: 2015
City: Buckingham
State: Bucks
Country: UK
Interest: Other
Posts: 6
hawkid is on a distinguished road
Default Still no diagnosis...

Hi All,

I posted back in October as I was having some worrying symptoms. My symptoms have progressed and I am still no closer to a diagnosis.

Current symptoms:
My issues began in my left forearm 10 months ago. This is by far the most affected region but symptoms have spread to other muscles, including my right arm and both hands.
My left forearm is very uncomfortable, the muscle is sore (burning sensation), it feels weak (fatigues quickly), I have constant fasciculations and occasional cramping. I have lost muscle - the diameter has dropped from 29cm to 24.5cm over the last 10 months. The worst symptom is myokymia... As soon as I partially engage the forearm, the muscles shake and ripple uncontrollably under the skin. As soon as I relax the muscle it stops.
My right arm started to feel bad 6 months ago. I feel the same horrible sensations as the left arm(soreness, burning, weakness, fatigue). I have had periods of intense fasciculations on this arm but they are not continuous and muscle size has been inconsistent. I did lose some muscle but I have been able to put a lot of it back on recently with weight training, even though my arm still feels horrible.
Both arms hurt when I type, hold my phone to my ear, hold a glass of water etc.
Both hands are shaky and cramp occasionally.
Progression seems to have been mainly down the left side of my body (apart from my right arm) and I now have symptoms in my left shoulder, back and more recently in my neck. Myokymia is visible in all of these muscles to some extent and fasciculations are constant. My right side is less affected so far.
My legs feel reasonably strong, although I do get a lot of random fasciculations and occasional myokymia.

Treatment
I am being monitored regularly at the Oxford MND clinic. I have had 2 EMGs, both of which were clean other than fasciculations. The last EMG was back in December. The NCS were normal. Lumbar puncture normal. Blood tests normal.
I still pass all of the tests in the clinical examinations and have no visible upper motor neurone symptoms. My reflexes are slightly diminished.
My neurologist can see the thinning of my left forearm, fasciculations and myokymia, but other than that there is no physical evidence for him to work with. I am not 'clinically' weak and my muscles are not severely atrophied at this point. He believes that I do not have MND, suggesting that my left forearm muscle would have wasted much more quickly if it was MND. He suggests that I have a random condition that will eventually go away.

Questions
1: How quickly do muscles atrophy with MND? My left forearm is pretty small now and I have seen a 15% decrease in diameter over the last 10 months. Would I really expect a faster loss than this?
2: Do many people with MND suffer myokymia? All of my muscles ripple and shake with they are engaged.
3: Is anyone aware of other people who have similar symptoms to the ones I have described where the result has been a random neurological condition that has alleviated in time? I find it hard to believe that my body can recover from what it is going through right now.
4: My last EMG was back in December. Do you think it is worth having another one now? My neurologist said that EMG only picks up MND in 60% of patients but it would give me some peace of mind if it is still clean.

Thank you in advance for your time in reading my post and answering my questions. I do appreciate it.
hawkid is offline  
Old 06-09-2016, 03:58 PM #2 (permalink)
affected's Avatar
Extremely Helpful Member
 
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,126
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
affected affected is offline
Extremely Helpful Member
affected's Avatar
Join Date: 2013
City: lala land
State: home
Country: OZ
Diagnosed: 05/2013
Interest: I lost a loved one to ALS/MND.
Posts: 11,126
affected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond reputeaffected has a reputation beyond repute
Default Re: Still no diagnosis...

Rather than waste my time answering all those questions I will simply say that you don't describe ALS in any way. That means you should not be trying to get us engage in this when you are working top doctors who are telling you it is not ALS.

We are here for the terminally ill and people caring for them.

I'm sorry for what is happening, but we are ONLY here to deal with ALS - that takes up everything we have!

Good luck, keep working with your doctors even though I can see it is hard in limbo.
affected is offline  
Closed Thread

Tags
atrophy, back, burning, clinic, clinical, cramping, diagnosis, fasciculations, go away, mnd, muscles, neurologist, no diagnosis, reading, shoulder, symptoms, tests, weakness, work


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Getting a diagnosis lgelb Do I Have ALS? Is This ALS? 0 09-29-2015 02:09 PM
Als diagnosis Brad0608 People With ALS - "PALS" 11 08-02-2015 03:58 PM
Diagnosis help Please pammy Do I Have ALS? Is This ALS? 7 07-17-2009 09:19 PM
Diagnosis help Please pammy General Discussion About ALS/MND 5 07-17-2009 03:27 PM
Hi, possible diagnosis given connieS Welcome New Members - Say Hello 3 07-09-2009 11:51 PM
What is my diagnosis- New here:( jaimebpac Do I Have ALS? Is This ALS? 23 06-04-2009 09:41 PM
Diagnosis rachelg General Discussion About ALS/MND 4 05-14-2009 08:12 PM
Help with Diagnosis please pammy621 General Discussion About ALS/MND 4 03-17-2009 03:03 PM
New MMN diagnosis summer1968 General Discussion About MMN 7 02-14-2009 12:36 AM
Second diagnosis with my dad rothfuss523 General Discussion About ALS/MND 5 09-20-2007 08:10 AM


All times are GMT -5. The time now is 10:04 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016