In limbo...worried and frustrated

I am a 50 year old female who has been in good health all of my life. Four years ago, I had an incident where I experienced numbness and tingling on my face and down my left arm to my hand. I was advised to visit the ER for a CT scan to rule out a stroke. Everything was clear. I was then sent to a neurologist to have a MRI. The neurologist decided that I was having “silent migraines” and sent me on my way with some migraine meds. He never mentioned to me that white matter was noted on the MRI.

I discovered this later when I requested a copy of the report. Fast forward to this past February when I suffered a case of shingles. I found that the burning sensation stayed with me after the rash cleared up, but it is all over my body. Post hermetic neuralgia ruled out by my new neurologist because the pain is not exclusive the former rash area.

I had another MRI with contrast and new lesions were noted in the periventricular area. Impressions were that moderate white matter disease progression since last MRI. I also had all the blood work to rule out other diseases…Lupus, Lyme, B12, etc.

In addition to the constant burning sensations, I have also had muscle fatigue and pain in legs and feet, muscle spasms in hands, arms, and calves. My gait is fine. My vision is fine. The doctor has ordered another MRI for the first of December because I am too afraid to undergo a Lumbar Puncture. The diagnosis she has given me is “demyelinating disease of the central nervous system unspecified”.

I guess I’m look for others who had the same symptoms or the same diagnosis. I am also trying to figure out what all this means…is it all my imagination or is something happening here?

I am 49 and been in limbo for years. Have had things come and go on MRI. Mind symptoms in 1991. Nothing until 2005, First had clear MRIs in 2005. Things seen in 2011. The older we get the harder to diagnose as by our age “aging” starts to to appear on our brains etc. Long lasting limbo landers seem to be over 40!. My vision is fine but I have a spastic right leg. No sensory problems although did at the very beginning of this journey. I had a LP which was clear. It was fine and I would advise you to go ahead as it does help to complete the picture.

Take Care

Moyna xxx


I have simular symtoms, all on my left side, was also told it could be complicated silent migraine’s, symptoms since 2005. My right ear is completely numb, this itch’s but I can’t scratch it argh… lots of buzzing too, particularly in the palm of my hand and the base of my foot along with the vibrations inside my tauso (sorry about the spelling). I have alot of right ear hearing loss, balance bad and tinnitus that is like chinese torcher. Last week I was diagnosed with Ménière’s disease but GP told me it was nothing to do with the Neuro problems. MRI’s are clear ( they just say no significant change). I did attempt LP 4 times without success due to spondilitis in my back. But for others they sail throught the LP. I am in Limbo and feel as if I am being pushed from pillar to post.

Catherine x

Catherine and Moyna…Thank you for responding to my post. I have wondered if some of my ailments are age-related, but some of them feel weird…beyond that normal aches and pains! I have started noticing that most of my problems are migrating to my right side. I do not like being in Limbo Land, but it is comforting to know I’m not alone. Thank you again.