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Thank you for posting this @Inara and I bookmarked it as well. The science is way above my head and I won't even pretend that I can understand it! I quoted one thing that you wrote that stood out to me. I have a calcium channelopathy (the N-type CA+ Channel Autoantibody) and I also have...

I had not seen that article before and thank you for posting it @Kalliope!

Wow, @Kellyj80503 Thank you so much for finding this info and alerting me! I have not posted on S4ME for several months due to family emergency (my mom was very ill and passed away last week). I will post about that in another thread to not take this one off track but wanted you guys from S4ME...

I tried it in early 2016 and it was absolutely horrible. It dropped my BP even lower than 80/50, gave me a severe headache, and lowered my already very low functioning (at that time). I think I stuck it out for 3-4 days until I couldn't stand it anymore. But from my blood tests, I do not have...

Thank you for the update @Binkie4 and you are a very good advocate for yourself. I'm glad it went as well as possible and that you are home now.

I'm glad you are looking into this further and I hope your doctors are being thorough now and taking it seriously. I agree that a "CFS" diagnosis (at least in the US) tends to shut down further investigation unless you really advocate, get multiple opinions, and never stop looking.

@TrixieStix You are very brave to share those photos and I believe they will help someone else down the line. Do you have a definitive diagnosis now of RP or are more tests being run? How are you feeling lately?

@Josie, I got your PM and had two appts today but will hopefully be able to reply this evening. And welcome to this new board and look forward to chatting further.

I was going to attempt the 2-day CPET test in 2013 (prior to finding the ME/CFS specialist in mid 2014 who is now my main doctor) but all of my doctors at that time advised me against it. My HR was still often going into the 160's unprompted at that time and they felt it was unsafe for me. So...

Glad I could make you laugh :rofl::woot::laugh:

@Alvin I think we might agree but are just using different words. To me adjunct techniques that can be therapeutic (not necessarily for me but in general) are things like chiropractor, massage, yoga, acupuncture, various supplements, psychotherapy, music and art therapy, pet therapy, meditation...

I didn't mean actual medications vs. people trying adjunct therapies as a coping tool (b/c some percent of people will benefit from it). If you are doing the adjunct therapy alone (for minor illness to cancer), it is dangerous if you are misled that it is a "cure" but if you are still doing...

I agree and I don't have any problem with people trying anything they want (if they are an adult and truly give informed consent) but I wish many of these "therapies" were used an an adjunct to real medical treatment *instead* of as the medical treatment itself.

I don't know what tests are permitted by the NHS (and @Justy will be able to advise on that part) but some standard tests done by my main doc and MCAS doc in the US are: histamine, tryptase, prostaglandins, and chromogranin A. Hope this helps.

Someone from the other board (who is new and I do not know well) recently sent me a PM re: MCAS and was asking really good questions and I am always happy to help. Then he started telling me that a family member encouraged him to do Annie Hopper's DNRS training for MCAS/allergic reactions and...

You didn't upset me and what I said was not directed toward you (nor to any specific person). I was just surprised to find this new thread b/c I thought that the prior thread (with Whitney's quotes and my replies) had been in a "Member's Only" section of S4ME but is now moved to a public...

I am concerned that quotes are taken from Whitney from another board and are now in a thread on S4ME that is not a Member's Only thread. I may be alone in this, but I feel very protective of Whitney, even though I have never met him. I had a few incidents in which I had a negative reaction to...

Why am I not surprised? ;):banghead:

This is a great question and even though I have been diagnosed with a calcium channelopathy, I do not know the answer and do not think that any doctors do either (except maybe Dr. Angela Vincent in the UK but I have given up that I will ever be able to reach her). This is a great question...

@Justy, is it possibly to request your old medical records to see what the actual ANA titer and pattern were? In my case, once we figured out that autoimmunity was literally driving everything (POTS/Dysautonomia, MCAS, muscle weakness, etc), and I got on the right treatment after 3-4 years of...