Forum

WOT IS IT?

What on earth?!!!

Hello. Want to make this succinct as I can. I have had many health issues for 6 years, initially I put it all down to a very violent accident in 2011, but am beginning to rethink. What I have found out to date is this:

I have chronic neurogenic changes that affect all the muscles in my back and shoulder on the right side. Also my right hand top of hand and thenar. All confirmed by EMG 5 months ago.

I have hypotonia in my throat muscles. Right side again.

I struggle to support my head which drives me crazy.

I now have severe and intense upper back pain.

I feel sick and can be sick if my head is not supported.

I have an extremely dry right eye (diagnosed as tear dysfunction) and use drops frequently.My right eyelid pulses all the time.

I have painful hands and sometimes very numb hands. My right hand stops working altogether if I type or do too much.

There are no spinal problems on a back and neck MRI

Prior to the onset of all these problems but 1 month after the accident I had a brain scan to check if I had a haematoma. It was clear.

The reason I am writing is that symptoms are bothering me in the right leg which is now very numb indeed. The numbness began a few moths back. Last night I sat on the sofa and thought I was sitting in a wet patch - I checked repeatedly but then realised it was the loss of sensation and it just felt numb, cold and horrid.

I have absolutely no idea what is wrong with me and would very much welcome any ideas. Feel angry and miserable. Oh, the neurologist I saw locally in 2011 said I was bonkers. I do have a very nice neurologist in London who did the recent tests and found the nerve conduction issues. He thinks it is a spine injury. He doesn’t know about the leg numbness though did know that I have had occasional right leg weakness for a number of years. All physical exams are okay though no knee reflex on the right side.

Any ideas?

Hi Madoak

sorry you’re suffering, first I’d like to say if a Neurologist told me I was bonkers I’d report him/her to the BMA.

You’re symptoms may or may not be MS related, no one can tell you on a forum. For a dx, usually you’d need a MRI of spine and brain, maybe a lumpar puncture and definately an MS Neurologist’s opinion. Push for a referral if you think it likely.

Keep a diary of all you symptoms, when they occur, how long it lasts, how you feel etc. It will help when you have to give a potted history to anyone (medical that is!).

Hope you get some answers soon.

Thank you. It’s all so hard. Am in constant pain and it’s hard to get by.