Anyone have other auto-immune issues, such as Raynaud's or APS Syndrome?

Hi all,
I haven't been posting regularly because I've been doing great!!! since starting JOH regimen last year. In July 2013 I began with symptoms, primarily low frequency hearing loss, tinnitus, ear fullness and distortions. In August 2013 I was diagnosed with cochlear's hydrops, although I would say I had some dizziness at the beginning, although maybe not full on vertigo. I took a round of prednisone and also had the dexameth. shot in the inner ear. And I cut salt to less than 1500 mg. Not sure if any of it helped. Definitely not right away, but perhaps over time. Around the end of September I started JOH and noticed immediate improvement, especially from the bioflavonoids (which I started first) and by Dec the tinnitus and distortions (which were the WORST) were completely gone!! In January when I had my follow up hearing test, my hearing loss had gone from severe in August in the lowest three frequencies to very mild in just the lowest two frequencies. I still get some symptoms (mostly distortions) with my female cycles, during times of the month when I would be naturally retaining more fluid. And I stopped the JOH in March to see how it would go without it. And so far, knock on wood, no problems at all!! Sometimes when the distortions arise, I will take the bioflavonoids again for a week or two and it does help, but not sure if it's clearing up naturally.

SO, last year in December I began to notice that when I was outside in the cold, my fingers and toes would sometimes feel numb and our hurt, and when I came in they would feel itchy and hurt for a while when warming back up. This was completely new. I read up and mentioned it to the doctor who said it could be Raynaud's but that because it was mild and my fingers weren't turning colors, there wasn't much to be done. He mentioned it could be auto-immune. Then, in July after my 5th miscarriage my infertility doctor ordered a "loss panel" to see if there were issues other than my age (45 years) contributing to the losses. Unexpectedly, after two rounds of testing, it was determined that I have APS Syndrome, or antiphospholipid antibody syndrome, a blood clotting disorder, which is also an auto-immune disease. This was probably not present a few years ago because I'd just had a healthy baby and pregnancy at 42.

I guess I'm trying to sort out the relationship with all these possible auto-immune disorders and wonder if there is anything that can be done to help. Can pregnancy cause auto-immune issues to pop up? Could it be something else? I am taking baby-aspirin for the APS Syndrome now. Aside from that, just multivitamins, vitamin D, folic acid. I've read about some of our unhealthy foods contributing, but to be honest, we eat very healthily and I make almost everything from scratch because I try to keep my salt low and because my daughter is allergic to several common artificial preservatives. |More than anything, I'm just looking for input. My neurotologist appears old school and doesn't seem to buy any theory other than fluid buildup and the cure is to use steroids and reduce salt. My next appointment is in Jan but I'm just trying to get a jump start on what I want to discuss with him. And also figure out if there is a different doctor I should see to find out if all this stuff is related (if it even matters)...

Thanks in advance for any thoughts!

 

That's interesting, June....about the herpes antibodies. My sister had a similar issue with another virus where she couldn't retain the antibodies. Then, she ended up being diagnosed with Pyoderma gangrenosum during a bout of MRSA which wasn't reacting in the typical way. This was followed by a diagnosis of Crohn's. All of this are immune dysfunction, as well.

Yes, I'm doing GREAT! Those distortions that drove me nuts finally went away, which was the best blessing ever!! And now, the only time I really have symptoms (aside from what is probably a permanent mild low frequency hearing loss) is during my monthly cycle. And also, I've had tinnitus and distortions with each pregnancy (prior to the miscarriages). I guess these are times of increased blood flow and increased fluid retention naturally.

I'm glad to hear from you, as well.

 

Thanks for all the input about this. I have had a feeling it's immune related for me because it occurred following an allergic reaction.

Oh my, June, you are so right about the distortions. There is no way to really explain it to someone else and it makes listening to anything so complicated and exhausting.