Waiting Game

Hi, Lets rewind 10 years, go to GP with numbness, tingling and balance issues, quick neuro exam and referred to neurologist. The day arrives and I attend clinic, neurologist concerned and books MRI, results from MRI ok, subsequent blood test shows low B12, injections started and still ongoing now and gabapentin as pain relief. During the last ten years there have been various flare ups and increasing neurological symptoms. Three years ago a concerned GP refers me back to neurologist. Appointment day arrives and neuro exam completed, positive Babinski test on right foot, significant right leg weakness and intention tremor in left hand and also loss of sensation in both legs and balance awful. Neurologist said " I see you have had B12 deficiency I think it’s Peripheral Neuropathy not going to bother with MRI. Now to present day, symptoms have continued on and off, fatigue and balance now a real problem. On 26th January woke up with no feeling in right arm and inability to move it from elbow down. Tightness round chest like being squeezed, sensation lasts 30 seconds or so then disappears then happens again, thinking this isn’t good by mid morning have no vision in my left eye, this lasts around 4 hours, in the days that follow bladder and balance issues occur, visit to GP, he asks do you have private medical cover or can you self fund, answer no. Urgent neurologist appointment requested with GP thinking its MS. Still suffering from fatigue and balance problems and right leg doing its own thing. Any one else had similar issues and then get a MS diagnosis ?

Hi Aileen,

Roll back to1991 and had tingle sensation when I moved my neck. Saw a neuro MRI and other tests clear. Diagnosed with temporary radiation myelopathy due to radiation treatment I had. It cleared up.

Then in 2005 had numb left arm. Saw neuro and MRI which was clear. Told it was a trapped nerve and it cleared up. Then in 2008 more numbness fatigue balance issues. Gp wouldnt send me to neuro this time as last MRI was clear. Given thyroxine. Anyway the relapsed passed.

Then I started to notice the slow development of right leg weakness and foot drop. Saw a neuro in 2011 and a lesion was seen on my cervical cord. He said it was deterioration due to the fact that I had radiation myelopathy years before. In 2012 I saw another neuro for 2nd opinion as the foot drop was getting worse. I had another MRI and there was a small lesion on the brain which was enhancing. He suspected MS and said I had it since 1991 and followed a benign course and the radiation theory was waffle. Anyway he gave me a lumbar puncture which was negative for MS and basically said I had a one off attack which had caused some damage.

I went back to the first neuro to be reviewed and last December he assured me I didnt have MS. well I decided to go to an MS expert in London last Month. He and his collegues have reviewed my case and said that I have MS and the scans have been consistent with it since 2011. He said in 1991 I did have radiation myelopathy and they think that this might have triggered the MS. He now wants me to go back to my local neuro and get on a DMD.

I think you need to see another neuro. Also anyone should know that once B12 injections are given then symptoms should resolve and not get worse.

Moyna x

Thanks Moyna, GP has asked that it is a different opinion so should be a different neurologist. We are in the unfortunate position where we have visiting neurologists and not resident, just hoping it’s someone who listens, I need an answer, one way or another.