breakdown41
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September 5, 2015 at 6:54 pm
I have a positive ANA, and I’m borderline for anti-ssb only — all the other antibodies on the panel were negative. Anti-ssb is the partner of anti-ssa — when only ssb is positive, especially at such a low level, and since I don’t have dry mouth, dry eyes, or lack of saliva the rheumatologist said I didn’t have Sjogren’s
Since I’ve been floating around the internet for a year trying to figure out what’s wrong I always notice when someone mentions ‘parotitis” because it was so odd and I felt initially everything that happened afterwards was connected to that somehow. I agree it can be an attack on the immune system but there has to be some sort of pre-existing event that kicks it off.
I’ve been wondering if I somehow ran into EV-D68, the virus that was paralyzing kids in the news starting in October last year.
If it is an autoimmune disorder ( I think mine is, just no idea what it is yet) then alternative/functional medicine advises to first get digestion under control. Horrible digestion is really miserable and getting it in check can only improve quality of life even if doesn’t solve everything.
Good luck to you and your husband.
September 5, 2015 at 6:20 pmThanks for your advice. I checked and I can’t go mayo because my insurance doesn’t take it. Not sure about Northwestern.
I’m so worn out by this at this point. I feel like I’m stuck here.
September 4, 2015 at 10:51 pmThanks, you pretty much said the very best thing possible, so thank you. Even about the self-diagnosis, which is true even for people who have been in bed by themselves for a year.
So –I had the full monty. I had an emg, an ncs and I don’t know what an ncv is but I had sfemg and repstim.
Out of all of those approaches, by two doctors, the “abnormal” part reported was ” Voluntary contraction of the tibialis anterior and vastus lateralis elicited mildly polyphasic and complex motor unit potentials.” Going on to say that the conclusion drawn from that abnormality was “mild, subacute-chronic radiculopathy at L4 on the right.”
I believe every other Possible Thing was normal, although it was consistently only my right side that was tested because they were looking for only systemic abnormalities. SFEMG test of the neuromuscular junction via the right thingy thingy ( actually it was the nerve that connect to my middle finger and my wrist) on the right were righteously normal.
I don’t know. I AM OBVIOUSLY DOING SOMETHING WRONG. I don’t know what it is but that wrong thing seems key, because despite all my Normal Tests my actual reality is HUGELY ABNORMAL. I pay my insurance out of my savings, I go see these crisp educated oblivious humans, they blow me off and collect more money, I shake and worry and Google my own personal atrocities from my bed because I have my karma just like everybody else and that is fine but for God’s sake there has to be some way to communicate to the Sickness System that I happen to be sick.
September 4, 2015 at 8:57 pmThanks for the links. The first one — the Miller Fisher variant one — this is exactly what happened to me. Cranial nerve involvement, bulbar weakness that progressed to my left arm and hand. Then later, during a second bout with severe stomach problems the entire thing descended. I could actually feel my nerves getting attacked until my knees were wobbly and suddenly I had to sort of massage the ground with my toes to stay stable. There were issues on both sides but the left was the worst.
How could I have missed this? I’ve been in bed for seven months just waiting for *something*. The whole time I kept reading about all this I kept thinking well, it can’t be GBS or anything like that because I have descending weakness, not ascending weakness. I think I just skipped over the “Miller Fisher variant” part. GBS meant total paralysis and I didn’t have that. I searched, I vetted, I shook my head. Nah.
What the hell, I’m not a neurologist, that’s why I spent my life savings going to see these people. I would have been MUCH better off just buying prednisone and treating myself, that is if in fact I even have a neuromuscular disease that’s treatable, NOT THAT ANYONE HAS TRIED TO FIGURE THAT OUT THIS YEAR.
I’ve been going to see a neurologist at Northshore University Health System. I’m so angry right now because I kept telling this story — about the facial weakness and the “viral prodrome”, diarrhea, descending weakness –all the things that happened — and the first thing she sent me to do was go visit an endocrinologist who not only made me wait six weeks to see her but then sent me for blood tests for a pheochromocytoma, which had to be sent off to Mayo, which took another week, and then when I made another appointment I got sent away again *because the endo had not contacted me in person yet.* I kept telling the story because I thought it might be important, because for example the *neurologist* whose photo is published on the Neuro clinic’s website is ten inches across from a hyperlink that says WE TREAT CIDP!
Goddammit I am so upset.
September 4, 2015 at 5:13 pmI don’t know if it sounds like GBS but *I* had parotitis a year ago and it started just this endless series of scary events. I never had a fever but I was sure when the parotitis turned into a horrible occipital headache that I had meningitis. Then the Neuro stuff started happening and it has not stopped since.
I’ve had the worst stomach problems since this started that I have ever had in my life. I was thinking in the beginning it was campylobacter, which can also cause parotitis. What helped me was to eat nothing but rice, rice krispies and butter for one month straight.
