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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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But when I do, I'll ask again for a mestinon prescription to see if it helps my eye droop and breathing issues.
Edit: I should add that my tests for Myasthenia Gravis came back negative.
@Gingergrrl Mostly it's a feeling that I am never taking a complete breath. Breathing normally and fully takes more effort than it should. I'm never actually short of breath or feeling faint, but it's an ongoing unpleasant feeling that I simply am not breathing deeply enough unless I force myself.@Webdog I noticed from your avatar that we live in the same state and that you consider yourself "Undiagnosed" as do I. I was wondering if you could describe your breathing issues as this is a major issue for me. I do not have any eye lid drooping or facial issues but I have other muscle weakness. All of it (the muscle weakness and breathing) have improved with IVIG but not to the level of a normal person.
Although I originally used the Institute of Medicine (SEID) criteria to diagnose myself, this diagnosis has since been confirmed by 3 different doctors. So now I am 100% diagnosed. Looking back, I've met SEID/ICC/CCC for the past 39 years.ETA: I just realized you said in Avatar that you are "84% to 91% undiagnosed so am not sure what that means or how to compare it to myself after all"!
I've had a number of auto-antibody tests. But nearly all within my HMO (Kaiser Permanente), so have not done Cell Trend testing from Germany.My tests for MG are all negative as well. Have you been tested for other auto-antibodies? If I can get this straight, there are two types of cholinergic receptors and the ones for MG are the nicotinic receptors vs. the ones that I have auto-antibodies against are the muscarinic receptors. Have you done the Cell Trend testing from Germany? It is not covered by insurance b/c not a U.S. test but for me the results explained a lot and were very helpful.
Good to hear. It's taken me almost a year to get this Mestinon prescription.I'm using it . Pretty good . Very low dose . 5 mg. I have IBS-d mostly but have no issues with Mestinon. Side effects minimal. And my PEM is cut in half . For the smaller exertions that is . So I'm liking it . Doesnt do much for OI en POTS but my dose is too low I guess
@Gingergrrl Mostly it's a feeling that I am never taking a complete breath. Breathing normally and fully takes more effort than it should. I'm never actually short of breath or feeling faint, but it's an ongoing unpleasant feeling that I simply am not breathing deeply enough unless I force myself.
An outside doctor recommended a pulmonary function test, but my HMO (Kaiser Permanente) denied the request.
You're not the first to be confused by my "84-91%" tagline. Perhaps I should change it.
I've had a number of auto-antibody tests. But nearly all within my HMO (Kaiser Permanente), so have not done Cell Trend testing from Germany. Some results were abnormal enough to get a referral to rheumatology, but not abnormal enough for any diagnosis (beyond ME/CFS).
My doctor has me starting at 30mg three times a day, then after a week upping to 60mg tid. So pretty fast ramping up.
@Gingergrrl I've always had some orthostatic intolerance, but it significantly worsened around age 38, when my ME/CFS went from relapse/remission to more of a steady state condition.@Webdog Thanks for describing it and it is sort of similar to what I experience yet different at the same time. For you do positional changes or being orthostatic vs. supine make any difference (or is this factor irrelevant)? Standing is the #1 trigger for me and the #2 trigger is raising my arms above my waist level and even worse if above my head.
I'm familiar with sphirometers, but have never personally had a test.That is such a bummer and would be curious how you score on a PFT test. Have you ever had a basic spirometry test at a doctor's office (where you blow into a contraption once with the nose clip on) but you are not in a pulmonary lab inside of the box doing three sets at a time, etc.
I've tweaked it a bit. Hopefully clearer now.Wow, I completely misunderstood it and thank you for clarifying. I thought that you meant that you were 84-91% unsure about your own diagnosis and I wondered how you had reached those percentages LOL. But you meant in general that 84-91% of all people are undiagnosed. I get it now!
Below is what my neurologist wrote. Based on this, I was given the option to see a rheumatologist, but rheumatology had nothing to offer me.When you had the auto-antibody tests from Kaiser, do you remember which auto-abs came back as abnormal?
My neurologist said:The ANA with IFE, which is a more specific test for the ANA that you have once had positive and once negative, is still pending. The rest of your test results are back.
Of the nuclear antibody panel, you have the follow results:
DNA DS AB < =9 IU/mL < 1
SS-A AB < =0.9 AbIndx < 0.2
SS-B AB < =0.9 AbIndx < 0.2
RNP AB < =0.9 AbIndx 1.6 (H)
SMITH AB < =0.9 AbIndx < 0.2
CHROMATIN (NUCLEOSOMAL) AB < =0.9 AbIndx < 0.2
RPP < =0.9 AbIndx < 0.2
CENTROMERE AB, SER QN < =0.9 AbIndx < 0.2
ENA SM+ RNP AB, SER < =0.9 AbIndx < 0.2
SCL-70 AB < =0.9 AbIndx < 0.2
JO-1 AB ID < =0.9 AbIndx < 0.2
Your anti-RNP antibody was somewhat elevated.
A normal anti-RNP antibody value is negative and virtually excludes the diagnosis of mixed connective-tissue disease (MCTD).
An elevated value is associated with different connective-tissue diseases to varying extents. An elevated anti-RNP level is necessary for the diagnosis of MCTD; it has a sensitivity of 95%-100%, especially if it is found in high titers (ie, 1:1,000,000) and in isolation (ie without other extractable nuclear antigens such as anti-double stranded DNA). Low titers are associated with other rheumatologic diseases.
Sensitivities of anti-RNP antibody in various rheumatologic diseases are as follows:
Systemic lupus erythematosus (SLE): 38%-44%
Discoid lupus erythematosus: 20%-30%
Rheumatoid arthritis: 10%
I have seen many rheumatologists write off these values as insignificant. However, if you are interested in meeting with a rheumatologist to discuss these results, I can refer you to see one.
Having been (mis)diagnosed as a primary depressed patient for decades and given around 3 dozen mostly worthless psych meds, I have extensive experience tolerating a wide spectrum of extremely unpleasant side effects. Perhaps this is my superpower.Wow, that is a very high dose! Do you tolerate meds pretty well?
Standing and sitting upright are my primary triggers. If I sit in a reclined position, I'm usually good. Like you, raising my arms also triggers symptoms.
I've tweaked it a bit. Hopefully clearer now.
Below is what my neurologist wrote. Based on this, I was given the option to see a rheumatologist, but rheumatology had nothing to offer me.
Having been (mis)diagnosed as a primary depressed patient for decades and given around 3 dozen mostly worthless psych meds, I have extensive experience tolerating a wide spectrum of extremely unpleasant side effects. Perhaps this is my superpower.
My breathing issues seem almost completely random. I haven't identified a reliable trigger.When you stand or raise your arms, do you immediately get shortness of breath? I am curious how similar we are in this issue. Do you use a wheelchair at all for this reason? For some reason, I have no breathing problems sitting upright and do not need to sit in a reclined position. It is weird and I wish I could solve this.
I did opt to see a rheumatologist, who told me there was nothing they could do for me.Did you end up seeing the rheumy or skipping it? Was also confused what your actual ANA was? If I am reading it correctly, you had one positive and one negative ANA but does it say what the positive one actually was?
My breathing issues seem almost completely random. I haven't identified a reliable trigger. My orthostatic intolerance symptoms are mostly neuro and fatigue. But my delayed PEM symptoms are a combination of immune, neuro and fatigue. I have never used a wheelchair, nor has anyone ever suggested one.
Those ANA tests were not specific. Only positive or negative. Looking at my records, I don't see a result for the recent more specific ANA test. I will ask.
I understand that most ANA tests give a ratio, but Kaiser doesn't do that in their routine ANA tests. The test only comes back with a positive or negative (I asked when an outside doctor wanted to know). I'm guessing it's cheaper for them to do it that way.It sounds totally different than mine and thank you for explaining it further so I could compare. My breathing issues are when I stand/walk or raise my arms. There was a point they were so bad they were almost 24/7 but now if I am seated all day, I can have an entire day with zero breathing issues! It used to be that I would be out of breath from just trying to open a bottle of water or staple papers but Thank God that nonsense is gone from IVIG.
No one suggested to me to get a wheelchair either (I mean doctors). The final episode was in 2014 when I saw a new cardio (who is still my doctor) and I had to walk from his office down a hallway to the restroom only to realize it was locked and walked back to get key, and then make 2nd trip to restroom and back. By the time I got back to the exam room, I was gasping for air to the point I could not speak for about 20 min and having chest pain & angina that mimicked a heart attack (but no actual heart attack). He hospitalized me on cardiac unit for 5 days.
My cardiac tests were all normal but I fail every pulmonary test I have ever taken: basic spirometry, PFT's, V/Q scan, etc. The inside of my lungs are clear (no scarring, fibrosis, tumors, fluid, etc) and the consensus was that my breathing was weak due to general muscle weakness which included my diaphragm and secondary muscles of breathing. I saw a cardio for a one-time consult in 2015 who actually thought I could have muscular dystrophy! He was a very nice man (and I do not have MD and he was way off) but he picked up on the muscle weakness to a level that no prior doctor had. He had me do a 3-D Echo of heart (which was totally normal) and he did not know anything about auto-antibodies at that time and neither did I.
They should give you a ratio and 1:40 is considered negative and 1:80 or higher is positive. Mine had always been negative but is now 1:160 which I know correlates with all of these auto-anitbodies and is not a coincidence. I'd be curious what your ratio (on your positive test) was if Kaiser will give you the info which they should.
I understand that most ANA tests give a ratio, but Kaiser doesn't do that in their routine ANA tests. The test only comes back with a positive or negative (I asked when an outside doctor wanted to know). I'm guessing it's cheaper for them to do it that way.
It does sound like you have significantly more breathing issues than I do. Mine are mostly unpleasant and annoying: more of a quality of life issue that has improved with LDN. I've never been gasping for air or had cardiac issues. That sounds scary and I'm sorry you experience this.
And your muscle weakness sounds awful. I only experience muscle weakness during PEM.
When rested, I have fairly strong muscles. I have little trouble carrying a 60lb bag across a room or doing 15 pushups.
I love to walk when I can, have a beautiful park nearby, and keep optimistically hoping for a remission where I'll be able to walk distances again. Perhaps that's why I resist the idea of a wheelchair.
I look healthy.
Day 4 of Mestinon (30mg tid) and my side effects have all decreased. Sleep was normal (for me) last night. The anxiety is mostly gone. No longer bedbound; just the usual housebound. The tinnitus is still there, but I've experienced much worse from psych meds in the past. My superpower is proving useful.
I have no choice of provider. I guess I should feel lucky to have health coverage at all. And a primary care doctor that recognizes he was wrong about me for many years, and now is willing to at least work with me a bit.How ridiculous IMO that they only tell you positive or negative vs. your actual ANA titer level. But nothing really surprises me about Kaiser (and no offense in case you are happy w/them).
I'm in San Francisco, so you can probably guess the park. But I grew up in Orange County. Feel free to private message me, if you like.It doesn't actually sound like you need a wheelchair and I don't advocate them for anyone who doesn't need one. If you did, you would know. I believe you will walk in that park again. Are you in So. CA or No. CA?
If only they gave out medical treatment based on how young and healthy we look.Ironically I am told that I look healthy, too. I saw a new doctor in Dec (for unrelated issue) and he said that I looked at least 10-15 yrs younger than my age and if he had not read my medical history, he would think I was totally healthy.
I have slightly high blood pressure. Usually the first test is 150/80 or so. I always have to tell the medical assistant to wait a few minutes and retake my blood pressure. Then it's usually 130/80 or lower and they don't bother me after that. Never had hypotension.That is awesome re: the Mestinon and your superpower is a good one to have. I've had additional improvements from Midodrine which I suspect brings additional blood/oxygen to my core and lungs when I stand but I could not tolerate 1/8 of a Mestinon pill! We are all so different!
I have no choice of provider. I guess I should feel lucky to have health coverage at all.
I did recently see a Kaiser doctor (obviously trying to get me the hell out of her office) ask me why I stayed with Kaiser. Hah!
I'm in San Francisco, so you can probably guess the park. But I grew up in Orange County. Feel free to private message me, if you like.
I have slightly high blood pressure. Usually the first test is 150/80 or so. I always have to tell the medical assistant to wait a few minutes and retake my blood pressure. Then it's usually 130/80 or lower and they don't bother me after that. Never had hypotension.
We are all so different. Sometimes I think I have a different disease than others.
Very glad to hear you've found treatment that is improving your symptoms.