Disappointment after going to large facility for big workup

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by GBHope, Jan 6, 2013.

  1. GBHope

    GBHope New Member

    I don't mean to whine and apologize if it comes across that way, but I am so saddened by what I hoped might lend some sort of idea to what has been happening to me this last year with more exacerbation. My insurance recommended that I go over to this large facility and I saw all kinds of different docs and specialties. Well I finally a month later got a report of their initial assessment in the mail. The one doc that I thought was very thorough and believed there was something going on, even said he thought I might have small-fiber neuropathy, has put in this report even with all his colleagues findings and all the records I took out there that he is suspicious for Briquet's, which is somatization. I have never been as depressed as I am right now. I have had this disease since 1995 and have had my EBV going up and down and my sed rate going up and down and positive tilt table, positive ear infections this last year, positive inner ear testing. I have another acquaintance who told me that they are trying to place that diagnosis on folks now with fibro, CFS, MS, Gulf War, etc., under the DMS diagnoses. I am just so saddened by this. This doctor wants me to go back out there for more autonomic and peripheral nerve system testing, but if it's negative, even though I have positive tilt and have seen Dr. Grubb locally with a positive tilt and seen them for years, he will then suggest that it is all in my head. This because with our illness we have many symptoms all at once. I am going to talk to my regular doctor about this, but I just feel so lost and hopeless right now. I feel like bursting into tears. I have been so sick and in such a flare that like the one gal posting on here now got really bad after getting 2 vaccines at once last fall and it totally set off my immune system. I have had repeated ear infections and sinus issues and been so sick and ill it's not fun. I just feel like giving up. I know some of you have gone through this as well, but it's just so disappointing to be treated that way. This guy doesn't even know me and I have years of positive findings and his colleagues found things, so how can he even suggest such a thing. I thought this people would be more educated about our condition, but I guess not. This is so sad and it's sad what they are trying to classify our conditions under. If any of you have experienced this, please respond and let me know, as I would love to hear how you dealt with this. I just refuse to accept that kind of diagnosis since I know it's not true. I'm so, so disappointed!!!
  2. kbak

    kbak Member

    GBhope,
    I think anyone that has delt with this DD for a long time hits that point where we are at the end of our rope. Since we are dealing with something most docs don't understand, pinning our hopes that their going to give us an answer just makes things more unbearable.

    If you insist these docs get to the bottom of something they don't understand and can't find, then you will get a mental health tag in your records and no one will take you seriously ever again. You don't want to go there.

    My sis and I both have CFIDS. I will tell you the difference on how we handled this. I learned a long time ago that there is no cure for this and so I have to be satisfied with treating sympoms.

    Without a cure or treatments that give your life back, at this time, maybe sometime in the future, I have docs that will work to treat my symptoms, like pain, insomnia, ect.

    I eat organic, and take good care of myself, and that's all that I can do at this time. There are big limits to my life, but I have no choice but to live with them and do the best that I can. That doesn't mean that I don't get frustrated or sad or mad, I just try not to stay that way.

    My sis decided that wasn't enough for her, she wanted to be cured. So she enbarked on seeing every specilist she could, doing regular medicine and alternative medicine for the past 3 yrs. now.

    She has not been cured, and is not much better than when she started except for the fact that she is probably using less pain meds now, which is a plus. But she is about $20.000 out of pocket poorer with no big gains.

    We all would like answers! I hope at some point something big happens to make a difference with CFS and Fibro and all the illnesses that go with these. Find a doc that you can work with and get some relief for the symptoms that bother you most.

    I'm so sorry your having such a hard time. Anxiety is a big part of this illness. Take something that helps with that, I do, just so your not emotionally tearing yourself apart. Different things help different people.

    I take Sam-e, which is over the counter. Plus my tramadol has a bit of anti depressant in it. This calms me enough to cope. I do pray things will get better for you.

    Take care,
    kbak



  3. hermitlady

    hermitlady Member

    Over the past 17 yrs or so I've seen countless Drs, therapists, specialists, alternative docs and had nearly every test known to man. NORMAL...that's what the majority of the tests came back with.

    Even in the midst of some of the worst flare/crashes I've had, not one dr has been able to figure it out and help me to feel better. It's a common scenario unfortunately, and so incredibly frustrating and depressing.

    I'm currently trying a chiro who does muscle testing and nutritional whole food supplementation. I'm only about 6 wks into his treatment, so no real improvements "yet". I have a sister who swears by this type of treatment for her intestinal/gut problems. We'll see, I always try and keep an open mind.

    Sorry you're feeling so frustrated, I know exactly how you feel. I've had one doc tell me one thing and the next doc doesn't even know a thing about what the first doc told me etc etc. Mindblowing. Keep trying, we have to...somedays are easier than others. xoxo
  4. GBHope

    GBHope New Member

    Like I said, didn't mean to whine, just figured I'd see what kind of journey some of you have been on. Normally I have done exactly what you have done, but this year got so bad with this severe EBV reactivation and the double-vaccine reaction. Then my insurance wanted me to go out to the larger facility, but I'm where you are. Just want to work with my local docs and try and just get some relief as I have been. Like you said about your sister, I ran up a 23,000 bill in 4 days and fortunately had met my deductibles, so it was not a major hit, but if I go back out there in February for more autonomic testing, I will be in major financial trouble, moreso than I already am, I'm sure close to the tune of 40,000 to 50,000 grand and I would probably be responsible for 5000 to 10000 of that. Enough is enough. I like you have always been able to get by, even though I'm disabled, with eating very carefully and taking a few supplements and a few medications. I take lorazepam twice a day and that helps a lot with what's going on. I didn't know tramadol had an antidepressant. The lorazepam keeps me pretty mellow and helps with the pain and the dysautonomia symptoms. We have our local world renown electrophysiology/cardiology specialist here in Toledo who I follow with and I think I will just continue on with them. I certainly don't need to go into more debt to have someone try and tell me I'm having somatization. I've been sick too long to play that card. It's like what is wrong with this guy. That's like so 20 years ago. Even their rheumatologist diagnosed me as fibromyalgia, chronic fatigue syndrome and some anxiety, endo said a thyroiditis, ENT said lots of sinus and turbinate and eustachian tube dysfunction, allergies, ID worthless, cardio wonderful and then Internal Medicine pulls the whole visit together and I think it's a freakin cattle call. I know one gal I saw on Youtube went to Mayo for her dysautonomia, but I can't afford it. It is what it is. Just gotta try and get by the best I can. I've done what the insurance wants and now they had to shell out unnecessary money, so that's retarded. I'm not running up a bigger bill when I can probably have some of that done here locally if necessary and at a much cheaper price. I don't know that all that is necessary. The only blood test that came out positive because they wouldn't look at viruses and my Epstein Barr was high B6.

    Thank you for the feedback. Great perspective.
  5. GBHope

    GBHope New Member

    I see a chiropractor too and I swear by the muscle testing to a point too. That was the first thing that helped me when I got sick in 1995. My dad was a chiropractor and helped me get some of my life back. Unfortunately I can't take every single thing she throws at me, but I use that whole-food supplementation too. That is what I have had to use both times my thyroid and adrenals have acted up. I use a probiotic by them and it has helped heal quite a bit a very sick gut from all the antibiotics I was on last year. I plan on in the future taking them as little as possible. I know I have a nasal culture pending right now and hope nothing grew out. It didn't before, so hopefully won't know.

    Yep, these docs don't keep up with each and know what the other one is doing. It is quite mindblowing!!

    I'm hanging in there, but thanks for the positive feedback. XXOO
  6. hermitlady

    hermitlady Member

    I went in for my fourth visit on Friday and am now taking 10 different Standard Process supps. This guy is a trip, I really like him and I really want this to work! He spent over an hour w me and even worked on some emotional cleansing type stuff...not sure what you'd call it. I just know I cried A LOT, he seemed to really tune in to my issues.

    I jokingly call him my Witchdoctor :) My sister's health has improved an incredible amt since she started seeing her chiro...after every doc, test and scan she had, the regular MDs couldn't help her and she was down to 100 lbs. She's so much better than she was and has gained a bit of weight back.

    I haven't told many people I'm seeking this kind of treatment, don't want to hear the skeptical feedback. Gotta keep an open mind and hope for the best.

    Cool that your dad was a chiro, you probably know a lot about this stuff. I just research what I can online and have talked to a few people that have tried the same approach for various problems. No overnight fix, but I didn't get this sick overnight either!

    Oh, by the way, you do not have to apologize here for "whining", that's what we're here for. :)
    [This Message was Edited on 01/06/2013]
  7. jaminhealth

    jaminhealth Well-Known Member

    first line to healing.

    When I hear Dr. Darrow on the radio and he's a Prolotherapy MD, he is forever saying the alternative, integrative medicine SHOULD BE the first line of attack.

    Herm, stay with this muscle testing doc and the SP products...I certainly believe in all that work for "true" healing.

    Wear the alternative badge proudly....
    [This Message was Edited on 01/06/2013]
  8. GBHope

    GBHope New Member

    Yes, my dad used Standard Process and that is pretty much what I take. I have taken them for about 16 or 17 years. Weird thing though is that I take 2 Immuplex and was taking 1 Livaplex and they have small amount of B6 and I have high B6. I have temporarily stopped the Livaplex and may have to stop the Immuplex if I can't get these levels down. I have no idea why I would have such high levels.

    Thank you for understanding about the whining, even though I'm not trying to whine, LOL.

    Glad to hear that the muscle testing helped your sister and hopefully will do the same for you. That's great that they can do the emotional cleansing. I think that would be helpful for me because I have a lot of stuff bottled up that hurts from back in childhood and adulthood.
  9. GBHope

    GBHope New Member

    The alternative treatments have worked the best for me with the chiropractor. I did see an alternative medicine doctor here in town that wanted me to try cholestyramine because I could have mold exposure or sensitivitiy because of high C4a complement, but I have not done that as of yet. I want to go in and see the chiropractor/nutritionist and talk to her some more. She has been working on my thyroid and adrenals because they are weak by giving me 2 SP products besides what I was taking and it has helped quite a bit, but you guys are right that it does not happen overnight. I need to make an appt to see her in a week or 2, as I am due. I try to get in there every 1-2 months. I can't afford to go all the time.
  10. KerryK

    KerryK Member

    The other real disease here is the conceit and arrogance of the medical community as a whole about how perfect their diagnostic abilities are. My own view is that medicine is still very much in the dark ages. For example, even for diseases that are easily diagnosed and well accepted, and have been for a long time, there are truly few good remedies and vastly even fewer cures. If we did not have effective antibiotics, and that day may be coming again, there would be almost no disease that is curable. The best advice I can offer is to just accept your disease and medicine's shortcomings and live your live as best as you can. Good luck!
    [This Message was Edited on 01/08/2013]
  11. jole

    jole Member

    I can't count the number of docs I've been to in the past 10 years, but will say out of them all (approx. 14) only 2 had any idea at all what FM/CFS entails. That's so sad, after all the medical reports out there. They're just too busy to read up on their own, and it definitely must not be their choice of conference to attend.

    Your frustration is definitely understood by many of us. I too thought of going to Mayo, except for the expense, but have heard if you write down FM/CFS as a diagnosis you're completely ignored. They don't seem to believe in it.

    I too take Standard Process supplements. My SIL is a chiropracter and gets them for me. Have found a couple that seems to help, along with my Neurontin being added back. But there are some supplements I can't take as well.

    My last doc took a lot of blood tests, and added the N for me. He said, I honestly expect the tests to all come back normal. Yes, he understands and believes in our disease processes, and it's a joy to have finally found him! I wish you all the best.......it's all so very frustrating and depressing to be treated poorly, not to mention the insults we endure from medical and non-medical alike.
  12. GBHope

    GBHope New Member

    Yes Kerry, that is pretty much it. It is just a hot mess and you try and live your life the best you can. Unfortunately I really needed help this last year, and it was very hard to get any help. I did receive some from the chiropractor/nutritionist and some from the mainstream medical, but it was difficult to wade through that mess and very exhausting at times with no answers a good majority of the time.
  13. GBHope

    GBHope New Member

    Yes, Standard Process has pretty good products and like you, there are products I cannot take. Right now I am trying to cut out some of my SP that has B6 because of a very high B6. I have taken them for years and don't know why I'm not getting rid of the B6. I have had a lot of help from Standard Process products.

    Yes, it is unfortunately so true that we have all run into docs that know nothing about our condition and we have had to endure so many insults from the medical and non-medical community, as well as direct family members even at times.

    Well if stating I have fibro and CFS is going to make them ignore me, they make no sense because their rheumy confirmed that diagnosis. What a mess.I have seen too many docs over the years and unfortunately so much of it was unfruitful.
  14. yucca133

    yucca133 Member

    After living with fibro for over 20 years, I sometimes fall into the trap of thinking that there will be some definite explanations for all of the discomfort.

    When I had some new symptoms a few months ago, I wanted to know what might be causing them. I went to a neurologist and after a couple of x-rays he declared that any problems I had were due to arthritis. When I mentioned fibromyalgia to him he totally ignored me. Then I went to an osteopath who did an EMG on my legs and he couldn't find anything wrong either. He did imply that the reason my back hurt was that my stomach muscles were weak. IMHO they both were very smug and totally useless.

    You would think that by now I would stop looking for answers but every once in a while you forget how most physicians respond to problems they can't see on some test. Years ago I had excruciating pain in my left foot. It took quite a while to finally learn that it was Reflex Sympathetic Dystrophy. All of the doctors I saw while in the hospital for 10 days didn't have a clue.

    Somatization sounds like a convenient way to explain pain to me. Oh, the person is depressed and the symptoms are because of that. Well, did they ever consider that pain is depressing in itself? Duh. I don't think, for me, it is worth the effort to try and gain validation that I have a legitimate cause for pain. I just wish some of these people could walk in our shoes for a couple of days!!
  15. MicheleK

    MicheleK Moderator

    I am so sorry that you are feeling such frustration with the ilness and the medical community. I think it would be safe to say that those of us here on the boards understand what you are feeling. We've all been there many times and it is a emotionally draining experience.

    I have to go see a specialist tomorrow and I am dreading using my itsy bitsy energy to be interviewed once again and most likely have my regimen altered etc. I usually regret the isolation of my bedroom, but tomorrow I will be wishing I was in it instead of sitting at the doctor's office.

    Hugs, MicheleK
  16. GBHope

    GBHope New Member

    Yes, it is difficult to have all this and some validation would be nice. I do have POTS and many of my symptoms fall into that category, but like you so many different symptoms and things going on. I just refuse to accept that type of diagnosis when I have so many positive tests this last year. Thank you for your support.
    [This Message was Edited on 01/09/2013]
  17. GBHope

    GBHope New Member

    I hope you have success with the specialist today and you're right that so many of us have experienced frustration with this illness and how we are looked at and treated. I thank you so much for your understanding and compassion. Best of luck again today!!