Ok now im going to ask you all if im not understanding this. I have a dx of MS which gets questioned by local doctors. Rheumy said circulating immune complex..something stood up on kidney biopsy ,,,,and what my doc said was corenal membrane dystrophy of my eyes (was genetic) the Rheumy says Can be...but...in your case you symptoms have the neuro's fooled and i know what you have. I am the man to solve this mystery. Get off the neruontin as it will worsen your condition, but then he downplayed my pain at the same time and gave me a followup of 6 weeks. I cant handle the pain without the neurontin. I took HIS lab slip of all things he was checking for
Complements 3, 4 (if youve been tested for these pls let me know..maybe u all know them or what they mean.
c reactive protein.
Then guess what? They all came back normal. No elevated Ana, Anca: NORMAL.
complements 3 and 4 in normal range.
when i looked at the link above to see the criteria , i can Fit into lupus in a mild sense but the first time i read it i didnt see but one...i dismissed a few..so id like to ask your opinions if these are significant symptoms or not...
1.blood/protein in urine always.....protien +350 and higher at times...was told iga neprhopathy, then alports then kidney biopsy says "immune mediated lesion resolving itself"
******Rhemy pulled the report, differential diagnosis were SLE, Connective tissue, Thin Membrane disease...
(however when bluntly asked if i had sle he said no..he also said no to the others)
2. blister in top of my mouth where gums meet lips..painless but only once..was rather large
3. during past 1 /2 yrs 3 rashes on face that were not butterfly...but like a mild tiny bumpy thing on face and ears only. No fevers EVER with any of this.
4. I have to take b12 for anemia
5. hairloss ? strands, never clumps
6. Pericarditis? who knows ? Got thrown into hospital overnight for suspected cardiac prob with abnormal ekg but normal echo, later told chostachonditis and gerd...released? (why would ekg be ab but not echo)
7.joints-this same rheumy ..i went to to tell him of swollen right knee that made me fall..he swore both knees were equally as bad and would do exray to prove to me so....he did them but on next visit no damage showed up.
8. I guess what im saying here is i can "see" how i fit into it to a degree but i dont think a 1 time blister in mouth and 2 rashes on face would qualify?
Oh and i did have (during flares) cyst which was a mole imflame and grow x 3 days, removed: squamous.
Next flare i developed lil bumps (benign cysts) under eyes. Optho said MS probably nerve endings not sloughing off the cells fast enough.
((please keep in mind ive mentioned these skin things to each neuro and have been at two major hospitals..the one before this checked for lupus thru the lupus panel....about
So i can relate to some of the things but i DO not see what i suffer from neurologically posted here. As far as pins and needles/legs weakness/ankles turning and spasticity with ON ....i do have ON in the left eye.
Makes a person wonder how it can be so close but yet I went to a Neurological Institue and made sure i Again asked about
lupus..exam with puzzles to do, physical exam, eye exam..and the result was MS.
****side note..no lesions. They say that doesnt matter and that my symptoms presented before the scarring
Any thoughts on this would be appreciated. So frustrating and so painful.
Every day brings us closer to what we reach for .........in all things.