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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. TrixieStix

    anyone have burning, aching legs?

    @rd123 I hope you can get in to see a good rheumatologist who can test you for Sjogren's and other things. Do make sure you keep in mind that being negative for the 2 Sjogren's antibodies (SS-A & SS-B) they test for in the blood does NOT mean Sjogren's can be ruled out. If you end up being...
  2. TrixieStix

    anyone have burning, aching legs?

    @rd123 Relapsing Polychondritis is very rare so chances are it's not RP. However it never hurts to rule one more thing out. This is a good source of information about RP (you can create a Medscape account for free to access the entire thing)...
  3. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif Since we last spoke I have been diagnosed with a very rare autoimmune disease called "Relapsing Polychondritis". Like ME/CFS it also has no biomarker so none of the usual autoimmune blood tests can detect it. It was only just 4 months ago that I developed the obvious outward...
  4. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    My IgG's are also normal. I found this article that I think might have some helpful information for you. It talks about treatments. http://practicalneurology.com/2017/04/small-fiber-neuropathy-in-sjogrens-syndrome-a-review/
  5. TrixieStix

    anyone have burning, aching legs?

    The first thing doctors try to do when there is evidence you have Small Fiber Neuropathy (SFN) is to try and figure out what the underlying cause of it is in the case where the cause isn't already known. In a % of people though an underlying cause is not found and they are labeled as having...
  6. TrixieStix

    Angiogram: Helpful for diagnosing ME symptoms? Worth the risk?

    are you able to seek out a TOS specialist? I think we talked about this before. The #1 guy in my opinion is Dr. Dean Donahue at Massachusetts General in Boston. A doctor at Mass General invented a specialized CT scan (with contrast) method that allows them to get very clear images of the...
  7. TrixieStix

    Getting your eyes tested when you have M.E. variable eyesight

    It's looking like my episode of "crazy vision" might have been vestibular in origin...perhaps "Labrynthitis"? It's now looking like I may have a rare autoimmune disease called "Relapsing Polychondritis" and it can cause flares of vestibular symptoms.
  8. TrixieStix

    Severe ME Sufferer faces ban on volunteering

    @Pike Here in the US volunteering can put your disability benefits at risk. You have to report any volunteering you do and they take it into account in determining if you can work or not. Because of this I have been afraid to volunteer for anything, even for just a few hours here and there.
  9. TrixieStix

    Reason why women come down with CFIDS more than men?

    Fact: The genetic difference between men and women is 15 times greater than between two men or two women. In fact, it’s equal to that of men and male chimpanzees. In short: the genetic difference between my husband and I is equal to the genetic difference between my husband and a male...
  10. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif hope your able to get some sleep. thinking of you.
  11. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif I am on day 4 of the steroids. I've definitely seen improvement in some of my RP-like symptoms, but now that I am tapering down off of them I'm noticing the symptoms going back to their baseline again. My response to the steroids is another check in the column for it being RP. If I indeed...
  12. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif Sorry your feeling so overwhelmed and frazzled. I get it. It looks as if your complement levels are normal after all. That's good news. But I do know how frustrating it can be to think perhaps you've found a possible clue or abnormality only to find out that it really is not abnormal or...
  13. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif So unfortunately the wait to see the RP specialist is still going to be quite long...4 months. Appointment is at the very end of February. Oh well at least it's not 5 months ;) I saw the other rheumy about my complement deficiency yesterday. He was nice. Unfortunately he doesn't seem...
  14. TrixieStix

    MRI shows no signs of MS, but...

    @nettle_tea was the MRI done with contrast? In April of 2016 I had a one month episode of symptoms much like your describing and I too was evaluated for MS and it was ultimately ruled out. I underwent MRI of spine and brain with contrast done to MS protocol. I had EMG and NCS testing and visual...
  15. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    I will write more at a later time. Gotta get my butt to bed since I have my doc appt tomorrow and it involves a while day of travel to/fro. In terms of possible Small Fiber Neuropathy, you might have better luck asking a neurologist about it/to test you. That's how I went about getting myself...
  16. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    Please do. I hope your appointment goes well. I actually had a rheumatologist appt this past Friday. This was my 1st time seeing Dr.Y. I informed Dr. Y about me and my primary doctor's concern that I may have Relapsing Polychondritis and about all my various symptoms and medical adventures over...
  17. TrixieStix

    Which prominent London NHS hospitals do a hydrogen breath test for SIBO?

    I understand. I actually tried to find a doctor or clinic where I could do it in person instead of thru the mail and found out that no one was offering the test in-person anymore where I live. The doctors offices I contacted told me they no longer offered in-person SIBO testing at their offices...
  18. TrixieStix

    Which prominent London NHS hospitals do a hydrogen breath test for SIBO?

    You can do SIBO testing thru the mail here in the US. My doctor at Open Medinicine Clinic wanted me to do it but I declined. The companies send you a kit in the mail that has vials that trap your breath and you send them back for analysis.
  19. TrixieStix

    anyone have burning, aching legs?

    Have you been tested for Small Fiber Neuropathy. It's done via a simple skin punch biopsy from the leg. I have Small Fiber Neuropathy and for me it causes symptoms like those you describe (along with others).
  20. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif my ergonomic set-up consists of a recliner chair, a 32" flat screen tv directly in front of my recliner (roughly 8 feet away from my face when I am reclined in the chair) that I use as my computer screen, a blue tooth keyboard and a blue tooth touch mouse pad. So basically I am reclined...
  21. TrixieStix

    C3 and C4 complement levels in MCAD?

    I have low C3 and low CH50 (my C4 is normal). The immunologist thinks I have a genetic partial C3 deficiency, but I actually think he may be wrong about this because genetic C3 deficiency is quite rare. From what I've learned from reading about complement deficiencies and from talking to a few...
  22. TrixieStix

    Mountain View Accommodations

    @KristenSF fyi: my insurance covered the Igenex test in full, but if it hadn't or had only covered a portion of it then Igenex would have then charged my credit card at that point. They didn't charge it upfront.
  23. TrixieStix

    Mountain View Accommodations

    @KristenSF Do also be aware that there may still be things you would need to pay the office for after your appointment other than the cost of the office visit because your appointment with the doctor will determine what tests they want you to do and some of those tests require you pay them...
  24. TrixieStix

    Mountain View Accommodations

    I would call and confirm whether or not you will need to have blood drawn there at the office or a lab near the office because at least 1 of the labs Dr. Chheda ran on me required that the blood be drawn there in Mountain View as that is the nearest lab in the country to me that has the ability...
  25. TrixieStix

    Mountain View Accommodations

    There isn't any bloodwork they want to draw themselves at the office anymore? This would surprise me. When I saw Dr. Chheda in January I told her I wanted to do any blood tests that could be done at any ol' Quest lab back home (washington state) for insurance reasons, but there were still labs...
  26. TrixieStix

    Mountain View Accommodations

    Do expect to be your appt to last at least 3 hours. My first appt with Dr. Chheda earlier this year (before the move to new clinic) had me at the clinic for at least that long. Spent 2 hours with the doctor, blood draw, and checking out/paying the bill (and some waiting between those things).
  27. TrixieStix

    Mountain View Accommodations

    This is also where I stayed and it was great. My room had a small refrigerator and a microwave. When I checked in they asked what we were in town for and when I mentioned that I was there for a doctor appt they gave me a 5% discount. Lovely family owner business
  28. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif sorry i have not yet responded. the past few days have been unusually busy for me (got a new dog). I will try to get back to you tomorrow :)
  29. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif Positions of anything I do with my arm affect my TOS symptoms. I had to give up working and driving 4 years ago because of it, and I am extremely limited in being able to do anything that requires my arms to be up and out in front of me, no overhead stuff either. For computer use I have a...
  30. TrixieStix

    immune related tests i should order for bilateral paresthesias...gloves?

    @waif yeah that super low platelet count on 9/25 seems fishy. Seems likely to be a lab error. Mention this to the rheumatologist and have them retest your C3 and C4 levels for sure. I assume the rheumy would want to do this anyways. Every doctor I've seen about my low complement has wanted to...