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Can anybody please help me answer some questions please. My neuro is is confused as to my diagnosis. I have had numerous things thrown into the melting pot and then disregarded as not enough evidence etc. I originally had a lesion on my brainstem that has now gone. I did collapse originally and thry thought it night of been a tumour or stroke and even MS.
My tests have been extensive in MS, every one coming back negative, apart from a positive lunbar puncture. I apparently have Oligoclonal bands in CSF wich are spilling over into the Serum. My MRI is now clear and I am told I don't follow the pattern for MS, wich is great cause I dont want it or anything bad for that matter, but unfortunatly things are getting worse and they just cant tell me what it is.
I have been tested 4 times for Lymes disease and that has come back negative, along with every other blood test know to man.
I had a letter the other day from my neuro saying the Anticoagulant blood test has come back borderline along with slightly raised polyclonal IgM.
I was sent to see a Rheumy, who dismissed me within the first 30 seconds of seeing him because I didnt have a rash. I pointed out that I have alot of joint pain and chronic lower back pain. I by no means expected him to cure me or say Oh I know what you have, but I did expect some civility or at least courtesy and a chance to tell him whats going on. I have a rash that comes and goes on my neck, I don't believe its of any consequence but worth mentioning. Along with the fact that my body is covered in hundreds of blood spots, some microscopic, some bigger, they don't itch or irritate, but they are increasing.
To list my symptoms would take a life time but some of them trouble me more so than other.
I get terrible brain fog, (thats the only way I can describe it)...My thought proccess slows down when this happens and my speech becomes a bit slurred and less clear. My joints ache, ie, my hips feel like they are gonna drop off, along with chronic lower back pain and recently my knees are starting to give me problems. I get foot cramps, and they are SO SO painfull. I have developed a shuffling gait, this doesnt happen all the time but is becoming more so. I get full body tremors and this tends to happen from knowhere.
I have developed a new symptom, after I eat my symptoms become worse, I get more dizzy, nausea, tremors, weakness etc etc.
I have terrible memory problems and hate to admit it, I get confused and scared. I dont trail antidepressants, I used to, but not any more as I have learned to mechanisms to cope.
The fatige is a big problem, if there 25 hours in the day I still would feel like I have slept enough.
I have acid reflux and take meds for that, I get inflammed eyes and eye infections. My teeth are just a nightmare, I have looked after them and seen a dentist more than just the usual check up, I have had 5 abcesses, and now have periodontitis.
I have developed Asthma, and use steroid inhalers, never had this before.
I keep getting bladder infections, thrush, and my skin is just awful.
I have recently lost over a stone in weight in just under two weeks, because I feel to sick sometimes to eat, let alone keep it down.
I wear glasses and recently had them changed into tinted lenses I have become light sensitive, my hearing is good though spot on. I could hear a pin drop a few miles away, but the flip side of that is its very sensitive to noise and sometimes I cant bear it, get tinitus too.
I get worse before my menstrual cycle, why I don't know. My arms ache, even when I am just folding the laundry.
Now, all of the above sounds like a total hypachondriac. I want to say I HATE this, I dont want to feel like this, I want my life back.
I used to be a fit, healthy positive person, good job and loved life. I am at the end of my tether with Neuros who say lets look at the physcological aspect of this and I am an enigma. As for the physcological side of my life, I am more and better balanced than my bank account.......Even with all this going on...
Does anyone know anything bout polyclonal IgM, and Anticoagulants being borderline and if you have Oligoclonal Bands in the CSF in Lupus. If your MRI is clear or has lesions....
I have no idea what is going on and slowly losing the will to live, the pain is awful and having a wheelchair is just a stage I didnt want to reach.
Any help or advice would be really appreciated....Thanks...:confused:





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