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I Need Advice of Forum Members

Discussion in 'General Treatment' started by AngelM, Sep 12, 2018.

  1. AngelM

    AngelM Senior Member

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    I have nowhere to go and no one to talk to. I need some solid advice. I was diagnosed with CFS in 2000, and was in and out of remission for the next thirteen years, but managed well. Over the past three years, my health has steadily declined. About a year ago, I began experiencing weakness in my arm and leg muscles. My arms and feet felt like they were made of lead. I had difficulty walking, like I was dragging my feet, though I’m not sure it was evident to anyone but me. I was also short of breath so I went to the ER and a battery of tests was done, including CT Scans head to toe, EKG, blood panels, snd MRI of my brain. The only thing they found was an elevated indicator for Myasthenia Gravis. My daughter has MG, so I was relieved that, at last, I knew what was wrong. I found a neurologist recommended by the MG foundation, traveled 700 miles to see her, and she acted like she was too busy to deal with me. She dismissed my symptoms and lab results and told me that there was absolutely nothing wrong with me. I remember my daughter saying, “Mom, isn’t that great? There is nothing wrong.” But I didn’t feel any different than I did when I walked through the door. So, NO, it was not great!

    Over the past fourteen months, the symptoms have slowly worsened along with the fatigue. My muscles burn like I have been lifting weights. I feel dizzy, uncoordinated, have to concentrate very hard to walk straight without hitting walls like a drunk. I’ve also begun having vision problems. Since my clean bill of health, last year, my family is convinced my problems are psychosomatic and want me to enter some kind of behavioral health program. Frankly, I don’t have the stamina to go through any kind of outpatient program. Just taking a shower wears me out. Much less getting in the car and driving somewhere. If I have enough energy to clean the house on one day , I pay for it the next by not being able to get out of bed.

    I accepted the CFS diagnosis in 2000, but I didn’t expect my symptoms to get worse. I have to do something. The progression of these symptoms are frightening me. I don’t know whether I should go back to the ER or see my PCP, who will set me up with referrals to see specialists. I have communicated my situation with my PCP by messaging, but he knows nothing about CFS other than what he can pull up on his computer. I need to know what tests I should ask him to do. I failed a tilt table test in 2001 and am wondering now if POTS should be looked at more seriously. I also am concerned about mold. But I don’t know whether I should see a neurologist, a cardiologist, an allergist, or an internal medicine doctor. BTW it takes months to get into see any specialist. There are no CFS doctors within 1000 miles of here, at least that I am aware of. I am on a list to see a nurse practitioner at an integrated medicine clinic, but it has been months since she received my medical records, with no word of an appointment.

    What is the best way for me to handle this? Everyone in my family has given up on me. I’m very close to giving up on myself. It is getting too hard.
     
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  2. rel8ted

    rel8ted Senior Member

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    So, we could be twins. I am going around with a neuro now about MG. I just walked to my mailbox and came to the realization that I cannot do that again - had a hard time catching my breath.

    I did get a DX of seronegative ocular MG on 9/4, but he didn;t take into consideration any of the other symptoms I described bc they were not manifesting at that exact moment in time. The ONLY reason I got a DX is bc I knew enough to take pics of an ice test I did at home.I have been going back and forth with this for more years than I want to talk about. If you have a ptosis and it responds to the ice test, photograph the before & after and make that into one pic. If you have voice symptoms, record them.

    We now have pics of me unable to hold my head up straight, a recording of my voice (I asked a friend to listen to the file and see if she noticed anything unusual - she actually thought it was a prank bc I had no control over my voice at all). If I have another horrible walking event before next week, we will be recording that as well. i even told him I had briefly lost the ability to raise my arms. He failed to mention that in the progress notes. i have fallen several times and have trouble opening jars or bottles. Just his morning had to give the fridge door 3 tries and finally rock back with my weight to get that thing open.

    He indicated that he doesn't "think the patient will generalize" and that my issues are autoimmune related. About 6 hours after I read that, reality sunk in. He is trying to say that I am rheumatology's problem, but MG also has an autoimmune component (you know, antibodies and attacking the neuromuscular junction). My hub and I had a huge laugh and then decided he gets one more chance. I can't risk it anymore, I lose my breath doing anything - stairs, walking on the slightest incline. I can hardly take my dog out in the backyard.

    Having double vision again and unable to drive. the neuro's solution to this is to have another blepharoplasty. Gee, did he hear me say that thee plastics guy took out 12mm of muscle last time and it held less than a year? That's double the amount the surgeon expected to remove, and he stopped bc he was concerned about my lid not closing completely (it barely does).

    I will be fair, he was kind, he is older, and sometimes you take the car to the mechanic and it runs just fine, so it can't be fixed. But, if I go in there with more documentation and get the blow off, I am going to try to go to Duke if I can get a referral, they have a doc who has a very deep interest in MG. I have read several articles that say the diagnosis can be tricky, but my guy only checked Achr antibodies, no Musk, no LPR4, does not want to do EMG.

    An estimated 15% of MG patients are thought to be seronegative, and we are treated like a bunch of crazy liars. It's the height of ignorance. Why would anybody fake being that ill? It's not as if we don;t have anything else to do in life......
     
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  3. Sushi

    Sushi Moderation Resource Albuquerque

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    Sorry to hear about this tough "medical" journey. I use quotes because it doesn't seem like you have had much real medical help. A ME/CFS diagnosis from a doctor who doesn't know much about the illness may or may not be accurate. I think we have to keep open the possibility of mis-diagnosis or co-morbid conditions. Like most of us, it sounds like you need a "detective doctor" and there are very few of them and it looks like you would have to travel to see one. If you were able to swing that it might be very helpful but would also cost some serious money.
    This is certainly a clue, as is this:
    I also noticed in your list of the tests you had that the only cardiac test you had was an EKG. This popped out for me because I just discovered that I had a cardiac problem that was causing symptoms that I misidentified as a progression of ME/CFS. Once that was addressed, some of my symptoms are much better (though I still have ME/CFS).

    Most patients don't find the ER to be the best place for complex diagnostic testing. They are more geared to acute issues. Does your insurance allow you to self-refer to specialists or do you need to go through your PCP? I can luckily self-refer which was helpful in getting my cardiac problem addressed. Though these symptoms are found in a number of conditions, I also had leaden legs and shortness of breath.
     
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  4. pattismith

    pattismith Senior Member

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    Dear @AngelM

    My symptoms looks like yours, but I don't have any positive auto antibodies.

    My condition also worsens a lot if I take any macrolide antibiotic, I get a kind of paralysis and it is dose-dependant.

    I wish I could have an EMG but I don't have time for myself for the moment, because of my husband illness and other things.

    Hopefully I am much better when I take a small dose of Liothyronine, so I stick to that for the moment.

    How is your thyroid panel?
     
    Last edited: Sep 12, 2018
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  5. Shoshana

    Shoshana Northern USA

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    Hi, @AngelM
    Haven't seen you recently and wondered how you are doing, so it is good to see you,
    even though I am sorry about your difficult situation, and the lack of family comprehension and advice, which is so common for us, but is still disappointing.

    I don't know what to suggest, atm, and I could only read your post, so far, but definitely,
    do not give up on yourself!

    I know you will not, but I want to voice for you, tht we don't want you to do that, ever, and even tho it is SO difficult,
    I do know that you can hang in there.
    You are strong and smart, and still valuable, even with this set of awful and frustrating limitations.

    That is confusing why that doctor treated you that way after the MG marker.

    I wondered as I read your post, if you have had a major mold exposure, or are concerned you might be sensitive to the usual levels.

    I don't know, but I think I would try to guess which specialist, and then, try to get an appointment, which means pressing your PCP to help get you one, probably, or their office directly, I don't know. And I dont know which to suggest either. Unless, you really have a good feeling about that NP at the Integrative med place. Then you could try to press them for an appointment. The failing of the tilt table test, should also help with a direction, but I do not know what. I hope that the other posters do.

    When able, I will read other people's suggestions for you, because I have similar problems to what you described.

    NO matter all the things I try, to maintain a bit of strength, or stamina, I continue to worsen, like you. I continue to try small things. And I decide on a priority of what to do or pursue next, and focus on that. I cannot think about more than 1 step at a time, at this point.

    Keep us posted on how you are doing!
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    You can talk to us here and collectively we have a lot of brain power ;). I was diagnosed with CFS in 2013 by multiple doctors. I believed them 100% but it turned out to be an incorrect diagnosis although I did not even begin to figure that out until 2016.

    I went to the ER with shortness of breath, tachycardia, and chest pains at least 2-3x in 2014 but each trip was completely useless.

    Do you know what they found that was an elevated indicator of MG (which autoantibody it was, or was it something else)? The fact that you are having symptoms of a neuromuscular disorder AND your daughter has MG is very significant IMO and the doctors are just being lazy and don't want to dig deeper.

    I absolutely feel that it should. I failed two TTT's (one in 2014 and one in 2016) and we knew I had POTS but did not know it was Autoimmune POTS until later.

    At this point, as much as I hate to say it, I think you are going to have to travel to see a doctor. When I first got sick, this concept never even occurred to me. I live in a major city and I just assumed that someone local could help me. I went in circles and wasted time and money while I got sicker. When I found PR and learned of my doctor, he was seven hours north of me (by car). I thought there must be someone like him locally but truly, there just wasn't.

    It is interesting that you were given a diagnosis of ocular MG but the rest of your symptoms were dismissed. (I still need to reply to your last PM and am behind as usual)!

    Autoimmunity always seems to get dumped from one specialty to the next (like CFS). Neurology wants to send it to rheumatology and vice versa or they just want to dismiss it altogether as if the autoantibodies are not relevant, even when combined with significant physical impairment and disability. It is absolutely crazy and I want this to change.

    I was the same as you describe, I was out of breath doing anything until I was completely wheelchair-bound for 3.5 yrs. It was shocking to me that 99% of doctors were not concerned by this. I went from basically healthy and working full-time in my career to being unable to open my front door or a water bottle b/c my muscles were so weak.

    Please also get tested for the LEMS autoantibodies (the P/Q and N-type Calcium Channel autoantibodies) in addition to Achr, MuSK, LPR4, etc. I don't have any experience with Duke but am hoping they can help you.

    No one would fake being that ill. This illness slowly destroyed every aspect of my life until I found the right treatment and now I am building my life back up again. Keep fighting no matter how many doctors treat you like you are crazy or a liar. I was in the hospital with anaphylaxis in 2015 and one doctor saw me for a grand total of five min (if even that) and decided I had "food anxiety" (when I really had a severe mast cell activation disorder in addition to several other health problems).

    Sorry if I sound like I am preaching from my soapbox but this stuff irritates me to no end- blaming the patients and shaming them when they do not get better. :mad::mad::mad:
     
  7. Wolfcub

    Wolfcub Senior Member

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    Why is it that when these doctors aren't willing or intelligent enough to do some detective work....they shove people automatically into the "anxiety" box? (rhetorical question really.)
     
  8. Shoshana

    Shoshana Northern USA

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    Plus, even when/if we do have anxiety, doctors should not discount our other additional and meaningful symptoms, and give us those off-hand and extra-speedy and extremely Unlikely "diagnoses" ….

    nor do they ask us, if we have anxiety, and if so, how or why we have the anxiety. When did it start, etc.

    Often, there is a very good reason that is totally rational, or that gives better clues about causes of other problems as well, OR, we don't know but we DO have other investigable and significant symptoms.

    It feels like we are "easy targets" :(
    :jaw-drop::mad:
     
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  9. valentinelynx

    valentinelynx Senior Member

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    If you can possibly get yourself to see Dr. Kaufman or Chheda at Center for Complex Diseases in Mountain View, CA, you will be treated appropriately. There may be doctors who are as good at diagnosing and treating illnesses such as you are experiencing (unusual autoimmune issues, POTS, mast cell activation, ME/CFS, etc), but I am not aware of them. I agree with @Gingergrrl, I think you will have to travel for appropriate care. It is not cheap, either the travel or the appointments, but neither is your life. You have some clues now to what is happening with you, and I agree, that is a good start!

    Like you, I muddled along with my ME/CFS for almost 20 years, and then went into decline in the past several years. I think the immune system eventually burns out and/or goes haywire with this type of illness. Then, it becomes impossible to muddle along anymore without real help!

    I wish you all the best & hope you can find the help you need!
     
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  10. rel8ted

    rel8ted Senior Member

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    I really do wonder if part of it is that they have too many patients to handle or, in some cases, are too close to retirement to care anymore. Compassion cannot be taught, certainly not in med school.

    Honestly, if you could make the same amount on a patient who is well maintained on meds vs a patient who has a lot of issues, which one would you rather treat? I'm not saying it's nice or right or even moral. I'm just saying that if being a doc is simply a j-o-b,and you are only there for the paycheck, that would be an easy mentality to adopt.
     
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  11. rel8ted

    rel8ted Senior Member

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    The pics worked for the ice test, so I have made him a nice little recording of my voice.hubs wants to make a video of me walking. I went in and read the notes in my electronic record. The doc has no idea that I already know what he said. Note: never put anything in my medical record that you don't want to discuss during my next appointment:wide-eyed:

    LEMS is still on my radar, but I want to give him a chance to tell me what else he thinks it could be before I start throwing stuff at him. It will only be my second visit and he's the 1st neuro who has had the lest bit of interest in my case. The other 3 couldn't be bothered.
     
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  12. rel8ted

    rel8ted Senior Member

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    In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras.”

    In other words,they basically learn that they should treat the obvious and hope that the other stuff resolves itself. Maybe they hope that we will fell like some improvement is better than no improvement.
     
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  13. Judee

    Judee Senior Member

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    @AngelM, I'm sorry you're having to go through this right now.

    Please don't give up on yourself even if others around you are. Keep reminding yourself that you know your own body. You know what is going on and it isn't a figment of your imagination. This disease is real.

    There are too many of us as corroborating witnesses to what this sickness does to a person. Plus, there are too many similarities and odd ones that not too many other people seem to experience with their sicknesses--IBS, MCAS, MCS, POTS...I could go on and on.

    (Of course, I'm noticing more and more of these things being put into the "psychosomatic" basket but :mad: I just remind myself of how many mentally messed up psychologists and mental "health" professionals I know to realize we're being affected by their mental disease but the problem is not ours but theirs. Truly!!!)

    You know your own body. One day everything we are saying will be validated by science but unfortunately, until it is, we have to put of with a lot immature people who have been given the mis-guided designation of "expert."

    Not to be mean, but why does your daughter get a diagnosis but you don't? One busy doctor dismisses your concerns and you're just suppose to paste a smile on your face and pretend that everything is okay. NOT!!! Just because you daughter's diagnosis came more easily doesn't mean you don't get to find out what is going on with your body just because you have to dig a little deeper and investigate more.

    Go for it. You have to do this. It's a matter of survival.

    So I think you should keep pursuing this if you can. Find another doctor but not through the ER. A lot of the other members posted good suggestions regarding finding a doctor out of state. If you are able to travel out out of state, I would try that. There are always tele-doctors but I'm very suspicious of them. I think they are in it for the money unfortunately.

    Remember---YOU know your own body. It doesn't really matter what other people think. Keep that as your mantra. Tell your family, "I love you..but you are not inside my body. I know my own body and something is definitely wrong."

    Please--because we need you. You're part of our family too and we believe in you!!!!:hug::hug::hug::hug::hug::hug::hug::hug::hug:

    Edit: Oops--I put "pretend that nothing is okay" when I meant "everything" - fixed it now.
     
    Last edited: Sep 13, 2018
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  14. Judee

    Judee Senior Member

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    You've probably already found this page and I'm not sure how current this list is but here are some doctors (only in some states though:() that are suppose to treat ME/CFS: http://www.cfstreatmentguide.com/doctors-and-clinics.html

    That I can tell, the only state bordering yours and showing a doctor is Texas. This doctor seems to have some good ratings and she is one of the doctors from Texas but please do more research before you follow just what I am giving you. I don't want to steer you wrong.

    Hope this helps. Also, I've been asking my chiropractor for doctor recommendations. Sometimes they know of someone.

    Also using Duck Duck Go I put in Functional Medicine Doctors and Oklahoma and this page came up: https://duckduckgo.com/?q=functional medicine doctors in oklahoma&t=brave&ia=web

    I'll let you wade through it because you know the geography of your state more but hopefully there will be something here that is helpful to you.

    I know you'll be careful. Some of these might not be what they seem but I hope you can find someone to help.

    Also here is the page for doctor's listings for Dysautonomia International: http://dysautonomiainternational.org/page.php?ID=14 (scroll down the page to see the USA doctors)
    Again :( none in OK but maybe if you called someone in a nearby state?? The very good doctor in my area is not taking any more patients but he referred me to another very good doctor who is not on the list who does the same thing so the list may not be updated either.

    Anyway, I think a number of these dysautonomia doctors may be Neurologists so they may be able to cover both POTS and MG for you.

    Edit: I went back read some of the reviews for the doctor at the top and some sounded positive. She does seem very caring but also seems to have a busy patient load however most of the patients seemed to love her. They just expressed a lot of frustration with her office staff.

    I hope you can get some help. Please don't give up.
     
    Last edited: Sep 14, 2018
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  15. Bettie77

    Bettie77

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    I'm sorry for you, and sorry that I can't help... :(

    Perhaps give her a call? She probably just forgot all about it.
     
  16. AngelM

    AngelM Senior Member

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    Thank you for this information. I found a doctor in Denton. Texas, I thought I might inquire about. Denton is not a huge distance to travel and, since it is north of Dallas, you do not have to navigate Dallas traffic.

    You mention the “doctor at the top,” but I can’t figure out who you mean. Is it Audra Fox?
     
  17. AngelM

    AngelM Senior Member

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    Ya, know, I have called and each time I am told that the NP has to go over my medical records and see if I am a good candidate for their clinic. But still haven’t heard anything, which makes me think it might not be a good choice for me anyway.
     
  18. AngelM

    AngelM Senior Member

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    Thanks so much for reminding me that “Yes, I know my body.” And I know when something is wrong no matter how many dozens of specialists tell me I am “perfectly healthy.” Sometimes it seems like when doctors say those “magic words” I am supposed to spontaneously recover—Like waving a magic wand or experiencing a miracle at Lourdes. But the fact is that those words only make life more difficult because the next step is the psych unit...So you “pretend” to feel fine, and you tell people that you are fine, when you absolutely are not.
     
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  19. Judee

    Judee Senior Member

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    I'm so sorry for the confusion. I meant the doctor I highlighted in this portion above. If you click on the word "doctor" in blue above it will take you to the reviews about her. She's one of the doctors in Texas on that list from this link: http://www.cfstreatmentguide.com/doctors-and-clinics.html
     
  20. AngelM

    AngelM Senior Member

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    I am surprised that MG is so difficult to diagnose. My impression was that it happened very quickly for my daughter. But that may be because she did not tell me about it until she had gotten several opinions. I know she went to neurologists at the Scripps Clinic in San Diego, Mayo in Rochester, and eventually to North Carolina to see Dr. Howard at the University of North Carolina. She had a thymectomy, which only Dr. Howard recommended, went into remission almost immediately, and has been doing well ever since.

    The problem with these symptoms is that they wax and wane. So st the time I saw the neurologist, I had improved to the point where I could walk a straight line. So she pronounced that no more tests needed to be done. “Have a nice day!”

    But it has only been in the past few months that I began to notice vision changes. At first, I thought I needed new glasses, so had the eye exam, bought new glasses, but that only seemed to make things worse. And then I keep going back to “Well, it is just my imagination.” And I compensate by just not going out of the house, or anyplace I have to walk. Because I don’t want to fall down. But I am having headaches now all the time that seem vision-related—and I have never been prone to headaches. And I sometimes wonder if this is MS—the symptoms are similar. But I always thought that MS was straight-forward—not like CFS. Now I find it is not. And I am rambling now, which will tell you that my brain is spinning like a top.!
     
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