Looking Ahead to Change: Little by Little
I don't make New Year's Resolutions. I don't think I ever really did, but the last decade or two would have been enough to stifle that impulse. I've just been too aware that I don't have that much control over what happens in my life.
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  1. xrayspex

    xrayspex Senior Member

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    HI I am curious if any other voices on mestinon? I have been wondering about myasthenia gravis and if there would be a med to try to see if improved might indicate diagnosis (in absence of bloodwork)
     
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  2. Webdog

    Webdog Senior Member

    I expected to already have a prescription for mestinon.

    However, I found out this morning that my current neurologist now only sees MS patients. I've been dumped and I need to find a new neurologist.

    It's a real challenge to find a neurologist at my HMO (Kaiser Permanente) who recognizes ME/CFS is not a psychological disorder. 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.
     
    Last edited: Jan 12, 2017
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  3. Neunistiva

    Neunistiva Senior Member

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    I took mestinon for several weeks.

    Doctors figured it's harmless enough drug to give it to me even though all the tests for myasthenia gravis came back negative. They hoped I had some atypical version of myestenia g. rather than the incurable ME/CFS (spoiler alert: I have ME/CFS).

    I had no changes whatsoever, and no sideffects.
     
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  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    It does sound like the cheapest and easiest option is just to try mestinon and see if anything happens. I don't know how many doctors agree to this.

    I'm aiming to ask on Monday.
     
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  5. Webdog

    Webdog Senior Member

    Just started Mestinon 2 days ago. There were some minor abnormalities in my nerve conduction test, so my new neurologist agreed to give it a try. Currently at 30mg, but will be increasing to 60mg.

    Noticeable effects so far:
    • disrupted sleep cycle/daytime sleepiness/nighttime insomnia (similar but less severe than I experienced with Anafranil)
    • loose stools (pretty mild)
    • bed or couch bound most of the time (usually i'm mostly just housebound when not in PEM)
    • moderate increase in anxiety (manageable)
    • ETA: moderate tinnitus
    Hopefully will see some results in a week or two. Fingers crossed.

    I should add that most of my breathing issues mostly resolved after starting low-dose naltrexone. But the eyelid droop and difficulties with facial expression remain.
     
    Last edited: Apr 2, 2017
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  6. Gingergrrl

    Gingergrrl Senior Member

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    @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.

    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"!

    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.
     
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  7. Webdog

    Webdog Senior Member

    @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.

    It's not correlated at all with anxiety. It's more annoying, physically unpleasant and frustrating; not anxiety causing.

    I've described my breathing issues in a couple other threads:

    http://forums.phoenixrising.me/index.php?threads/air-hunger-shortness-of-breath.1475/
    http://forums.phoenixrising.me/index.php?threads/my-air-hunger-has-improved-dramatically.21746/

    I still have some breathing issues, but they are mild compared to many of my other symptoms so I pretty much ignore them now.

    Besides, I never could get my primary care doctor to take my breathing issues seriously or run any tests. An outside doctor recommended a pulmonary function test, but my HMO (Kaiser Permanente) denied the request.

    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.

    The Institute of Medicine (now National Academy of Medicine) report writes:

    "Diagnosing ME/CFS in the clinical setting remains a challenge. Patients often struggle with their illness for years before receiving a diagnosis, and an estimated 84 to 91 percent of patients affected by ME/CFS are not yet diagnosed."

    You're not the first to be confused by my "84-91%" tagline. Perhaps I should change it. :confused:

    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).

    Sometimes I wonder what my test results would have been 11 years ago or 17 years ago, when many symptoms were much worse, but no one would believe me or run anything beyond routine tests.
     
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  8. Grigor

    Grigor Senior Member

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    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
     
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  9. Webdog

    Webdog Senior Member

    Good to hear. It's taken me almost a year to get this Mestinon prescription.

    I'm really hoping it will help ease some symptoms. A reduction in PEM like you experience would be an unexpected bonus.
     
  10. Grigor

    Grigor Senior Member

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    Yeah. For me the PEM is the reason why I take it. Doesn't do much otherwise. But 5 mg is nothing. I would go verrrrry slow with upping it. Hope it helps a bit
     
  11. Webdog

    Webdog Senior Member

    My doctor has me starting at 30mg three times a day, then after a week upping to 60mg tid. So pretty fast ramping up.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @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.

    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.

    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!

    The Cell Trend testing would be private pay with any insurance (not just Kaiser) and just something you would do on your own if you were interested. When you had the auto-antibody tests from Kaiser, do you remember which auto-abs came back as abnormal?

    Wow, that is a very high dose! Do you tolerate meds pretty well? When I tried Mestinon in 2014 (for POTS) I started with an 1/8 of a 60 mg pill so it was only 7.5 mg and I did not tolerate it at all and it gave me respiratory depression and I almost had to go to the ER but waited it out. My doctor said that I should never take it again and never have.
     
  13. Webdog

    Webdog Senior Member

    @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.

    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'm familiar with sphirometers, but have never personally had a test.

    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. :angel:
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    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.

    Yes, and it absolutely makes sense now!

    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?

    It is definitely NOT my superpower LOL and I take low doses of everything. How I tolerate high dose IVIG so well is still amazing to me.
     
  15. Webdog

    Webdog Senior Member

    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.

    I did opt to see a rheumatologist, who told me there was nothing they could do for me.

    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.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    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.
     
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  17. Webdog

    Webdog Senior Member

    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. As long as I don't exceed my energy envelope for the day, it doesn't matter too much if I expend energy slowly or in intense bursts.

    Often I will prefer energy bursts if it means less time spent upright. For example, I prefer to carry as many grocery bags as I can from the car rather than make additional trips back and forth.

    When I do expend energy, I lie down and rest afterwards, or the neuro symptoms (brain fog, lack of coordination, eyelid droop, eye tracking issues, etc.) kick in.

    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. Even in my current health, when rested, a half mile walk can be very pleasurable. If all I do is the walk and rest, I might even elude PEM the next day.

    My limited cardiac tests have always been normal, except for during the initial viral infection that triggered the ME/CFS (heart arrhythmia). I used to have occasional skipped heartbeats, but that ended around the time my ME/CFS shifted to chronic (around age 38).

    Ironically, it was ~6 years after a positive ANA before I started getting more detailed immunological tests, and by then my ANA was back to negative and many of my more severe neuro symptoms had subsided.

    All my standard medical tests are pretty normal. I have no pain (apart from headaches). I look healthy. If not for the 2015 Institute of Medicine report, I'd probably still be only offered psych referrals instead of medical testing.
    ---

    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. :lol:
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    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).

    Thanks and prior to having the wheelchair and getting IVIG, it was incredibly scary.

    This is where I learned that I differed from most people on PR. I initially assumed when I joined that we were all the same but I had constant muscle weakness unchanged by rest or activity. It was not delayed, ever. After IVIG when I could suddenly lift a folder, take the papers out, and staple them all on my own, it was like a whole new world had opened up again. And this is just a small example.

    This is beyond anything I ever dream of doing but will be thrilled with a tiny fraction of that. I still cannot climb a single stair and my baseline is low but each time I can do something that I have not been able to do in 2-3 yrs, I am thrilled even though it is un-noticeable to anyone who does not know me.

    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?

    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. He was not dismissing me at all vs. just giving his honest opinion based on how I looked. I also think I look better since IVIG b/c prior to it, it was physically challenging for me to open the vials with my contact lenses or wear make-up (b/c of arm weakness and shortness of breath) and now these are both easy for me again.

    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!
     
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  19. Webdog

    Webdog Senior Member

    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.

    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! :D For a while after diagnosis, I was angry with Kaiser (for misdiagnosing me for 17 years), but anger only gives me PEM. Better to appreciate what's good in life as best as I can.

    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.

    If only they gave out medical treatment based on how young and healthy we look. :rofl:

    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. For example, I have elevated blood pressure and experience no body pain. Most of my symptoms are neuro, and to a lesser extent, immune. But the PEM is real and debilitating, and no other disease seems to explain the PEM.

    Very glad to hear you've found treatment that is improving your symptoms. Mostly, I'm just keeping my health stable and trying a few low-risk treatments right now while waiting for research to catch up and provide better options.
     
    Last edited: Apr 3, 2017
  20. Gingergrrl

    Gingergrrl Senior Member

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    Agreed and at this point I do feel lucky to have health coverage period and also do not have a lot of options. I hope to have a better option next year but for the moment am locked into what I have now.

    LOL :rofl:

    Even though I have been to SF many, many times, I live in LA and am not actually sure which park you mean. Will send you a PM later.

    My BP is chronically low no matter what interventions we have tried. Prior to IVIG, it was around 80/50 for 2-3 years. Now with IVIG plus Midodrine 2-3x per day, it usually hits 100/70. New doctors are surprised how low it is, or act like it is a good thing, but it really isn't and I wish I could get it consistently higher.

    I am certain that I have a different disease but what it is called is beyond me at this point.

    Thank you and I really appreciate that! It's been a slow process of non-stop research and fighting to get treatments approved. Am so glad I fought for about six months to get the IVIG b/c it was worth it.
     
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