Almost Diagnosed,lost old MS diagnosis
Hi My name is Donna. Im a 37 year old div. mom of 3 from NY. I Have been going through a whirlwind of medical specialists for the past 2 1/2 years. In December of 2006, My Neuro confidantly diagnosed me with MS. I had 2 rounds of IV solu medrol for optic neuritis over 3 months and severe vision loss. I have major joint pains and msucle spasms, had pneumonia 2x in the past year and a half. I had blood work that came back with a positive anticardiolipin antibody. I have a slow INR also. I have arthritis in my knees , ankles and feet. I have a bakers cyst behind my left knee. I have frequent excessive levels of protein in my urine and always have blood in it, on exam , not visible to the eye. So after my neuro confidently diagnosed me, my spinal tap and MRI said otherwise. He said , well.. youre looking so much like MS, due to other symptoms I didnt list. But, with some of your other symptoms, I think you may be SLE. SOOO, Back to my primary doc I went to get a referal to a new rheumy. So my primary said hmm 11 criteria.. you have sun sensitivity but not major. You have proteinuria,slightly elevated ANA every so often,Positive Anticardiolipin antibody, definate neurological issues,respiratory involvement and arthritis, thats enough to diagnose ya... sooo my neuro, said.. well, looks like you have a new diagnosis... Has anyone else here just gotten used to one diagnosis only to have it changed to something you hadnt even really contemplated? Sorry this is so long.. Thanks Donna
my goodness you're dealing with alot ....
my PCP had me going to a rheumie for Lupus (and all tests indicated negative except the initial ANA) and now they are looking at MS...
It's been crazy few months with all kinds of tests....and still awaiting some diagnosis..
I've read many stories of diagnosis change in relation to lupus ..here on this board and elsewhere... It appears that it's so difficult sometimes to pin down when all indications are there...
what were your symptoms that led to a MS diagnosis? I have pins and needles all over and lack of reflex in my right leg.. as well as burning on feet (neuropathy).
Good luck to you!!
Well, I first went to the neuro because I was having extreme fatigue, problems with my knees and ankles, they felt like they just couldnt hold me up. I was having problems walking, I would walk about 3 feet and feel like I walked a mile. I couldnt hold my arms up above my head without fatigue, couldnt fold towels or sheets, brushing my hair became a nightmare. I had really bad reactions to heat, major vision changes, to now having pretty much lost all the vision in my left eye with no real reason. I had cognitive slowing. I had numbness in the left side of my face, sometimes couldnt tell the difference between the temperature of steaming hot water and just warm water. I also tend to have a fine, mild tremor. A whole lot of muscle spasms mostly in my neck / shoulder area and in my legs.Urinary and bowel issues . Sooo most everything led to MS. My neuro thought I was a pretty clear cut case. But lo and behold, my MRI and Spinal tap didnt agree with my neuro. Soooo over 2 years time and different MRIs and numerous blood work and all sorts of diagnostic testing, the one thing that keeps occuring is more and more lupus type symptoms with the anticardiolipins and sometimes elevated ANA, lung involvement, fibro,arthritis , kidney involvement and the skin rashes, but not classic type lupus reactions.. so its all so very confusing and at this point I just call it the DONNA Disease.. because thats the only real name I have to it.. my sickness/illness. But all agree that I meet the criteria for lupus now. So back to the rheumy for a diagnosis.. thanks for the response.. and good luck to you!