pinkmk (@pinkmk)

Hi. I have the same problem. I’m so sorry. It is very terrible. The medicines I’m on I wouldn’t recommend to an enemy but they do bring some relief. I don’t even want to name them. I have autoimmune disease so I hope that when I get treatment for my disease I can get off of my medicine for this.
I have a positive development! I just made an appointment for next month with a rheumatologist connected with the Mayo clinic in Pittsburgh (I live in Florida but he’s the expert in my rare disease)! I’m so excited!
Do you have allergies, asthma or autoimmune disease?

Wow John! Yes! I’m familiar with poly. It’s very similar to what I tested positive for on my skin and the same process- thigh biopsy…about another week and let’s see what they say.
No one deserves to go through pain. I hope you have more good days than bad. 😀

The skin biopsy says dermamyositis. That’s what the muscle biopsy today was looking for. My other symptoms; dermagraphia, other unexplained rashes, COPD (I’ve never smoked), hiatal hernia, iratable bowel, uncontrollable acid reflux without disease, intestinal inflammation; are textbook.
Keep in mind I’m not a meat eater, I limit my vegetable intake to the ones my wholistic practitioner said were acceptable for me, I used digestive enzymes, vitamins, other supplements and no alcohol, no caffeine, no chemicals since I was 18…seriously. Because my migraines have been so bad since I was 8 and stomach pain has been so bad since I was 12 I had my first colonoscopy at 21.
You’d asked about MS before, I have increased hyper intense foci but they say it’s due to migraines not MS. I’m no doctor but I think the Mayo clinic, I’ve never been but I have faith they are the best, will discover that people with chronic migraines are because of this white matter.

I was a vegan until I started having kids and a pescatarian who trended towards wholistic approach so no, this wasn’t medically induced. I tried for 15 years to treat my gastro and allergy issues wholistically and now I vlog about how dangerous that is so I’m kinda a pariah in the chronic illness community because people are getting on a band wagon as I am learning a lesson. (This also frustrates doctors because my organ and breve damage from not knowing I had a serious autoimmune disease all there years is so far gone and they want to suggest vitamin this and that and I’ve been-there-done-that.) My husband works for an enzyme company and they partner with vitamin and essential oils companies do I get my heart’s desire for free.
I actually stopped taking them all in March because I think between my healthy diet and all of the supplements, that may be screwing my test results too.
I have visibly swollen ankles;which is not a hallmark of fibromyalgia. I have a ganglion cyst on my wrist, also not but also can be totally totally benign and not a major arthritis problem.
You are right, they might try to ignore biopsy results, my last rheumatologist ignored the positive skin biopsy alone and refused to order the muscle biopsy as is standard procedure. That is why he is no longer my rheumatologist. I subscribe to an info page the sent me a link to the experts on my disease in Philadelphia and they explain that with the muscle biopsy, skin biopsy, the organ failure, the neuropathy, they have enough. If the new neurologist says he doesn’t, then I will become enraged. My disease has a 50-70% mortality rate and this is why…dying from preventable lung disease or throat cancer or because the autoimmune disease goes untreated.

Thanks love.

None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don’t think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I’ve been screaming from the mountain-tops that it’s not fibromyalgia and they wouldn’t listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I’m currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I’m only 38; I can’t grasp things…I can’t feel things…I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I’m] “too young for this” way too often. I don’t throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I’d like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.

Thanks for tagging people. I actually just got out of surgery. I’m on my way home. In a lot o pain because they did my upper thigh. I’ll have results in a week or two.

Me too. It took them four years to find it. They didn’t believe me because the blood tests were “inconclusive” and they said I had fibromyalgia as I continued to deteriorate.