Completed 3 days of testing at NIH!

[Zizzle]

I completed my 3 days of testing and evaluations at the National Institutes of Health today for 2 research studies on Myositis. It was quite a journey of discovery for me, and I would recommend it to anyone. The staff were all amazingly helpful, kind, committed to their work, and sincerely interested in everything associated with my health. I can honestly say it was the best series of medical encounters I’ve had in a long time, from radiology, to phlebotomy, to all the specialist visits, even the photographers. The people were great. The only difficulty was finding my way around the hospital for all my visits (you don’t get an escort), but NIH staff of all stripes offered help the moment they saw someone looking perplexed in the hallways.

All my results will be sent to me and my doctors, which will truly help guide my care, since they have access to tests my doctor can't ever order. They are analyzing my genome and apparently have identified a number of genes tied to myositis. They will do complete HLA typing, tons of antibody and immune cell testing, and they are testing me for all sorts of rare infections, and interestingly, I learned strep and staph are associated with Myositis. My kids we're battling recurrent cases of strep throat the winter my rash re-appeared. Hmmm...imagine if it was triggered by something as commonplace as strep?!?!?

My results aren't all in yet, but I've already learned I don't have "Amyopathic" DM anymore...I have mild muscle involvement in my shoulders and upper thighs. I had an abnormal EMG on my shoulder, and both docs who did manual muscle testing noted my thighs were weaker than the rest of my muscles. The full-body MRI may confirm it. I was noticing I had trouble shoveling snow, jogging, and recovering from even moderate exercise. I would be sore for days and barely able to walk sometimes. I don't know if I'm sad or relieved to know what's really going on. Now I can't exercise to soreness anymore.

Thankfully my lungs and heart are fine, although I have sinus bradycardia (low heart rate), but I knew that. They confirmed I have dysautonomia, including my low BP and jumpy nerves and reflexes. They ruled out carpal tunnel as a cause of my frequent hand numbness, so I may need to try elbow guards to shield my ulnar nerves.


When I'm ready to try an additional medication (and start a "permanent" form of birth control), my extensive bloodwork suggests Cellcept would be a better option over Methotrexate, due to some Lupus overlap features. I also have low white blood cell counts, not dangerously low, but my lymphocytes are low, both CD4 and CB8, and CD3 (never heard of that one)? Apparently Cellcept might raise my lymphocyte count. My Vitamin D level is a respectable 44, my rheumatoid factor disappeared for the first time in 9 years, and my ANA was lower than ever. LDN? Diet effects? The doc said it might be differences in the labs who ran the test, but I'd like to think it's progress toward healing.

Near the end of the visit, they had a Grand Round with me in a gown and 10 doctors and researchers in the room. 4 of the docs were some of the foremost experts on Myositis!!! I could not believe they were all there oogling over my rashes and answering my never-ending questions! I stumped them with several of my questions and managed to talk about LC, my 60% skin improvement on the autoimmune paleo diet, and my additional 20% improvement on LDN. They seemed interested...

I have another doctor who follows my case and is available to answer questions anytime. He spent a cumulative 4 hours with me over the last 3 days and understands my case in amazing detail. He said I didn't ask the most questions ever, but I did ask the best ones. If things ever go downhill quickly for me, I know exactly where to turn now.

[Gabes-Apg]

WOW! what a journey.

I wonder why your thighs have muscle weakness? did they give you an indication of why?

how do you feel about medication change? (and permanent form of BC) will you give the LDN ?3 months or more before you consider it?

[Zizzle]

Proximal muscle weakness is the hallmark of myositis, so it gets your shoulders and upper thighs first. Later it can affect the neck and swallowing muscles, the heart and lungs, but I seem to be fine in those areas.

I do plan to hold off on the new medication for as long as I can. But if summer sun sends me into a crazy flare, I'll have no choice. We talked birth control and there are no good options for me. Apparently I'm a risky surgical candidate due to the prednisone, low white count, and low blood pressure issues. I was ready for a tubal... I refuse to do anything hormonal, and he worried whether I might react to a copper IUD, given my metal allergies. I don't know what to do. For the patients NIH treats, they force birth control on gay couples!! No exceptions! But my rheumatologist may be more willing to let things slide...

[Gabes-Apg]

on the BC side, have you researched the implant?

I started them when my 'IBS' symptoms were bad. Yes, it is hormones, but without copper/metal, and also not absorbed via the gut.
that might be enough to appease the NIH without causing grief for your MC etc.

[Zizzle]

I worked for an OB/GYN and saw too many horror stories of women unhappy with their implants. I don't want to do any unopposed progesterone option (implants, depo-provera, mini-pill, etc). ALTHOUGH, if estrogen is one of the enemies, I wonder if adding progesterone might make me feel better? I dunno. Not to mention I think the anti-malarial I'm on makes hormonal birth control less effective.

[Zizzle]

So I did a little reading on Dysautonomia, and yes, I've had it since I was a teen. It's the diagnoses that explains all the weird symptoms I had since adolescence, when no one was paying attention (orthostatic hypotention, slow resting heart rate, hypoglycemia, inability to maintain body temp, exercise intolerance, hyper reflexes, tremor, etc). I chalked it all up to Mitral Valve Prolapse at the time, which, BTW, I absolutely don't have anymore. I do have tricuspid valve irregularities now, but they are in the "normal" range. Dysautonomia is very common in people with joint hypermobility, but apparently rare in the population overall.

What is most interesting about this is that dysautonomia symptoms are caused by an excess of dopamine and a lack of norepinephrine. My recent organic acids urine test showed I had precisely that - an abnormal dopamine/norepinephrine-epinephrine ratio. The test suggests that Clostridia bacteria species and their metabolites are responsible for creating this imbalance. Other literature suggests a genetic enzyme deficiency is the cause. I'm so confused...but I have to get down to the bottom of it somehow!

[Lesley]

If you are confused I am totally . What a journey as Gabes says.
I am glad you have someone to turn to with all this. I SO hope LDN helps you.