Hi So glad to find your site. I started with C-spine arthritis in my late 20's. Just began limiting activities that exacerbated this. Was working part time, raising my 2 daughters, running 3 miles a day. At 38 had to have surgery with general anesthesia. Never felt well since then. Chronic fatigue diagnosis came, with r/u of other causes of symptoms. Headaches, tingling/burning in scalp area, neck, upper back, burning, brain fog, feeling like glasses prescription is off, no exercise tolerance. Legs just lose strength, and I would need to sit down.. Feels like it you could pull my head up off neck something would open up. Levothyroxine has helped with thyroid, but neck symptoms just progress. Had MRI with finding of C 4/5 and 5/6 disc protrusion which was read as sub clinical. Neurologist had no suggestions for me, even though I had foot reflex which was abnormal. I think the chronic fatigue diagnosis gave me lack of creditability. So I lost any hope of medical help and learned to listen to my body and self manage . No swimming, bicycling, or any other activity that stresses neck. NEVER extend neck. Sleep position carefully I have a sleep number bed which helps. Exercise is 1 mile of walking a day. Any more drains me for the next day. House activities spaced out with back rest inbetween. If neck issues arise, rest, rest, rest, in proper position. Family has had to adjust to mom and now gramma's," sorry I can't join you for that activity:. Manage to work, with minimal call outs. As all of you, I have found that you can accomplish a lot more than you think you can when your body is working against you. 4 years go I saw another neurologist to for a fresh look. He checked for Myesthenia gravis, as this was the one condition not originally checked for (MS, GuIliane barre, Lymes, ect negative) Blood test was very low normal so repetitive nerve stimulation was done (OUCH) there was some very minor abnormalities here, but not indicative of the MG.
So I just continued on as I had been.
Now I am 55. 2 weeks ago I had severe event, with symptoms I haven't had for over ten years. Overdid, but not any more than I do on occasion when I just preschedule a rest day ahead of time. Was on my feet all day. Ignored slight brain fog feeling. Woke up with SEVERE headache, like my head(not face) was being crushed by wet cement, burning/tingling neck, between shoulders, to middle back. Extreme brain fog. I was beat. No way to function. Into bed with head/neck carefully positioned and wait it out. That was a Sunday. I made it to work on Tuesday, but it was a struggle. It's been 2 weeks I have low grade headache, intermittent tingling scalp, neck, between shoulder to mid back, down both arms to pinky and ring finger. Brain fog to mild level. I see my GP to discuss f/u this coming Monday. I have learned so much from reading your posts. Know now the MRI probably was not accurate enough if more than 3mm ,and that I should have seen a neuro surgeon. This recent event SCARED me. Didn't think I would have such severity after managing so well these many years. Don't want to have my head in the sand and not address an issue if it needs to be addressed. I almost feel guilty asking for your help, you all have so much more to deal with, I feel fortunate. Any thoughts on how best to approach all this with my GP Monday? I live in NH and am an hour away from both Portland Me. and Boston Ma for major medical centers.
Thank you ahead of time for any help you have!
Kim- "while I breathe I hope"