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Thread: Doc's giving me the run around, need diagnosis.

  1. #1

    Doc's giving me the run around, need diagnosis.

    I am going to get to Jacksonville Mayo Clinic towards the end of this summer somehow even if i have to hitchhike and couch surf. Untill then I am stuck with doctors that feel like con-artist school'd thiefs. Need a Diagnosis and sugesstions fast.

    Slowly over 5 years I just lost my energy and life. Back problems maybe, hurt it pretty bad riding circus bikes, down for a week no doctor though, most likely cause extended fasting. Seen six doctors and passed every test, lots of blood work, and barrium swallow. too many of these doctors just looked at me like i was crazy. you might have IBS or go see a shrink, take some nsaid's, were the common responces. finally i decided to just eat every herb i could get my hands on and try everything. At the worst point i could not drink more then 4oz of water a day and not within 6 hours of food. Stomach is recoverying due to Antibiotic/Antiviral herbs, and Tannins. Boneset/Chaparal/Sophora/Rue. most importantly:
    Galangal and Potentilla

    I had to figure this thing out, Symptoms started out slowly, itchy skin turned to burning then Horific numbing. Weekness turned to feeling tied down by large heavy leather straps and then like cement was being injected into my upper body. Basicly got used to crying myself to sleep and praying I don't wake up tomarrow. A few things that really agrivate symtoms:
    Anticolingerics, like Benedryl/Amytriptaline, and oral Zinc, makes me go completly numb like being burnt alive. and foods that create fementation, on a gluten free, and dairy free diet now, pressure builds up in my upper stomach and I feel as if i am being stabed and having a heart attack. My blood pressure is 120/80, lots of blood work no signs of anything indicating heart like troubles.
    Almost all pain symptoms are located in my shoulders and elbows, sometimes down to forearms and wrists, and my whole torso feels like it is abnormally heavy, numbness in spine right below my breasts spreads out along my back towards arms. the spot on my spine is also the area i have the majority of stomach pressure issues. I can't function and havent been able to for years, but the combination of lyrica-tramadol-sevella, reminded me of how it felt to actually function again.
    I decided to give doctors another chance and see one for possible nerve damage. Lyrica really healped for a few weeks, then my dose got above 600mg a day, switch to nerotin which does barely anything, tramadol does wonders(doctor dosent give me very many though), Sevella helps alot too, but bad reaction to ssri's and snri's now too leaves me mentally unable to handle the anger/rage feelings, so i worry about tramadol's simularities to seritonin inhibitors. robaxin kinda healped too though short lived. as far as hearbs i was using any and every herb good for nerve damage, main one European Mistletoe realy worked just a little better then lyrica(but is kinda dangerious to mix with drugs).

    Where to go from here? after reading forums i see i'll have to ask about trying Baclofen, and think either Lyrica or Mistletoe with breakthrough meds is the way to go. i just want my life back. dont think i'll get the meds with out a diagnosis though. And to complicate things I was honest about my drug use, i took psycadelics when younger but never to the point of abuse, smoked cigarettes and pot, but quit both, 5 years off smoking and a few off pot(really never got stoned more then 3 weeks in a row, just quit being fun), drank heavily a few summers but quit that too can't handle drinking anymore.

    I dont know what to do, neroligist wouldn't see me, sent to internal medicine, she said my vitamin D level was low so i spent 2 months taking 50,000iu and still pain is overtaking everything i try.

    I need to do all the work and tell these money vampires what to do! Start with asking about electropunture, GS nerve block, and ct myleogram, maybe mri. and thats after reading the forums here, hope someone knowledgeable about tests see's this and could read and understand all this, and put up with my bad spelling and speach. Fighting for my life, while i can actually think and well do one or too small tasks a day. I am not an easy patient, almost 15 years studing herbal medicine and I really tried hundreds of things, this feels like my last chance to kill this sickness and i am going down fighting.

  2. #2
    OK, I'm going to try to sort this out a little. Please correct me if I get anything wrong. Basically, your symptoms come under the following categories:

    GI issues (pain/pressure in stomach and anything else?)
    Pain in shoulders, elbows, wrists mainly
    Numbness on part of back
    Weakness/tiredness

    The fact that Lyrica helps your pain gives support to the idea it is neuropathic pain. I don't see why to switch to neurontin (an older drug) if Lyrica was working. Neurontin often has to be titrated up to pretty high doses to help. So perhaps your doctor had a good reason to switch from the Lyrica, but I don't know what that reason was.

    My husband has had a similar problem, all sorts of symptoms and no diagnosis. Actually, we went to Mayo in MN, who said they usually didn't figure these kinds of cases out - and the indeed did not succeed in diagnosing him.

    What we found helps somewhat in such a complicated case is to STOP doing things. Don't take a bunch of supplements, don't add a ton of medications (particularly multiple at a time), don't change diet radically. The reason is - diagnosis is difficult to start with, and becomes practically impossible when complicated by a bunch of treatments.

    So we tried to simplify it as much as possible.

    If your vitamin D is low, that can cause lots of problems. Was the level re-tested? Is it normal now? That would be one thing to pursue.

    I'm not sure why you would think of baclofen - that's for spasticity, and you have not described any spasticity.

    Robaxin helped? Do you have muscle spasms? What did it help with?

    Did you have these stomach problems before all of these herbs and medications?

    As far as tests - well I wouldn't want a myelogram without a good reason. And I personally don't see why that would be an appropriate test at this point. MRI is not dangerous, and good - but you have to know which "piece" of you to MRI - it's not a whole body thing, it's very specific. It would have to be decided which part of the spine corresponds to which parts of you that hurt (or are weak). Maybe c-spine? But since your pain sounds more like it might be in the joints, I'm not sure an MRI would be the way to go.

    Personally, I would try to simplify things. See if your vitamin D level has been corrected.

    And if picking a doctor - I might try a rheumatologist. You have joint pains - and rheumatologists are often the mystery solvers. But again, I would encourage you to get it as simple as possible before seeing one, to make you odds of obtaining a diagnosis as high as possible.

  3. #3
    Junior Member VavaBoomer's Avatar
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    From my own experience I'm thinking you may have some disc herniation of C6-C7 or some other degenerative spinal disease. I would suggest getting an MRI of the Cervical Spine. Send me an e-mail and I'll send you more info

  4. #4
    thanks for the sugestions, spine would make sence. And aside from my chaotic writing I dont mix tons of things together, just try many different things to find a few that work, When they stop working is when i look for more and barely know anything about western medicine. Formulating some kind of strategy, thanks again.

  5. #5
    You're welcome - I didn't mean you were necessarily taking tons of stuff - just as little as possible is best for diagnosis. And left to their own devices, doctors can go mad with the pad (i.e. prescribe a bunch of stuff too).

    While the cervical spine is a possibility, I'm not sure that would account for heaviness in the torso, and it would not explain any GI symptoms I don't think.

    Again, I'd try a rheumatologist - they're called "arthritis doctors", but they deal with all sorts of inflammatory/autoimune conditions, and can be very good at mystery solving.

  6. #6
    You definatly sound like you need a futher work up. See a neurologist. Get spine MRIs All the things you describe could be from some type of spine problem (there are many). Good Luck it can be long complex journey or quickly diagnosed. Major teaching hospitals may the best choice but the wait for appoints can sometimes be long.

  7. #7
    you sound exactly like me, but i hear mommy come play with me, and i cant. same pain. look up fibromyalgia. it may sound crazy, but it met all of my symptoms. i go to my pmd tuesday and will speak to him about it. i am taking lyrica, celexa, and ambian to make it through, still hurt, but not as much. fibromyalgia usually takes a long time to diagnose. i have been in pain for over 10 years. i hope i get an answer too.

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