Waiting for diagnosis
On 15 April 2015 Channged my entire year. All of a sudden I started having weakness in both my hands and arms and then 2 days later in my legs and feet. Then I started having traveling numbness there and I my face and head or tingling vibrations in parts with a fatigue and heaviness so overwhelming I could barely walk, to then all over. Also pain between my left arm pit and back of breast which comes and goes and varies in intensity, negative on Ultrasound. Eventually after a few months and after sleeping all night, I'd be in bed for 3 - 8 hours at a time barely able to move with a strong I call it biochemical feeling vibrating and coursing thru my entire body head to toe. Other times I feel the need to sit. Standing is taxing and within second feel the need to sit. I've been tested and found negative for MS, Lupus, and Myasthenia Gravis. I have no muscle or nerve disease nor MG after a major EMG test. I ask the head Neurologist at UC Davis and specialist in MG for his best guess as to what it might be. After saying I have a lot of arthritis on my cervical spine, which can give that heavy feeling and possibly some Fibromyalgia, or heart or gland issue. Since the EMG in January I have had some improvements. My body doesn't feel quite so heavy and I am able to have more activity but still have to be careful. I do lay and rest but I'm up most of the time and can drive in our small town if I'm not having a bad day. Weather changes really affect me and I feel highly fatigued. I'm able to stand a little long before having to sit.
Replies
I\'m sorry you are having trouble getting a dx. Perhaps, you could find a doc that would do a clinical assesment, and try mestinon. There are a lot of us that are seronegative. I had a \"mild abnormalities\" on a SFEMG, after I was on treatment. Some docs will dx with a positive response to mestinon. Best wishes.
I did have a trial of Mestinon. The doctors told me I don\'t need it since I don\'t have MG. I\'m not as bad as before and it got me over the worse of it. Everything just takes so much time in between appointments and tests. There was even two month before I could get in to see two doctors, 2 separate times and so often I had to wait a month to get MRI or Ulta sound done. Didn\'t that happen with you?
Thank for responding to my entry Barbel. Thanks for the best wishes. This has been such a weird experience. I\'m waiting for my next referral within the UC Davis Hospital system right now. If it was for insurance I\'d have more smaller tests done long time ago at the same time to figure the out. Dr told me they can only look into one thing at a time in order for insurance to cover. It feels like Insurance is to much in the drivers seat.
I\'m waiting for a diagnosis - right now neuro suspects MG but today the ACHR came back negative (I know that it is negative in 50% of OMG). Waiting for EMG in a few weeks.
I\'ve been struggling now for a full year with transient symptoms: diplopia, ptosis, facial droop on one side, instability in legs and complete falls occasionally, and (not sure if this is MG) crippling fatigue in the early afternoon. I\'ve hung on to my (luckily flexible) job for the year, but I don\'t know how much longer they will put up. My psychiatrist insists this is not stress, not somatic or PTSD. Can anyone offer advice? I\'ve asked my GP, shrink and neuro all for time off, but they won\'t do more than 2 wks. I feel weaker and weaker. Most recnetly told, \"once we diagnose you, then we\'ll cross that bridge.\" Also, neuro says he will refer to opthoneurologist if EMG comes back negative. He implied no MUSK test where I live. CT and MRI are clear for other things.
Any thoughts or advice would be greatly appreciated.