At end of my rope today as I know many of you are, especially the freshly stricken. Probably because of the 1 step forward, 2 steps back part of this. Yesterday had an hour or two where I felt halfway normal. Even went for a mild jog. Then oh boy did i pay for it last night and today with the buzzing, shooting pain, cold spots, and dizziness. Hard to accept that there hasn't been even a noticeable linear positive progression. Have been to 3 neuros, 2 infectious disease, done every diagnostic procedure (brain/cervical MR, autoimmune factors, vit and heavy metals, mold exposure, allergy testing, endoscopy, EMG etc) and absolutely nothing but for some mildly below range copper/ceruplasmin levels. I am 39 and can't accept that this level of pain and disability just came on all of a sudden, non-length dependent, with no explanation and is irreversible. I try to fight every day and it is so exhausting to get through it. Feel more impaired than some 90 year olds I see walking around and the most distressing is not being able to meet the energy of my 3 little kids, who I desperately want to enjoy for a day without being constantly reminded about pain, dizziness and all the other fun stuff that goes with this.

I was curious if anyone here has gone for a week to Mayo to see if a team of docs could try and look at the whole clinical picture from a number of angles. I know some folks with chronic rare diseases were able to get some clarity that way. I don't know. Am just trying to think of an action plan of any kind? Any docs that seem to have a handle on this condition and ways to treat? How about pain management ctrs that are terrific at least masking the symptoms (for now, i will even take that)

And Cana Girl, I do believe and will not accept this is as good as it gets. I believe it will get better no matter what is said and we will find all find a path forward towards a healthier, happier more pain free life. It just won't be easy.
SORRY FOR THE RANT!!!

On 900mg's neurontin/600mgs Magnesium/200 mgs minocycline/samento-banderol and grapefruit seed extract.