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  • Help in pointing the DR in the right direction

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    Old 06-28-2018, 03:27 PM   #1
    FalseCharity's Avatar
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    Help in pointing the DR in the right direction

    I'm 29 and have been having trouble since I was 19. Every year my health is worse and I can see myself going downhill and have been getting nowhere with doctors and now I'm just going in circles. I'm in pain every day and have "flares" that are so bad I'm in bed 24/7 for days feeling so un-well I just wish I would die to get out of the pain. When it first started I was having heart trouble. I have Tachycardia (high heart rate) all the time along with SVT and alternating bradycardia. After much study and many tests they decided there is nothing structurally wrong or electrically wrong with my heart. They have no idea why it does what it does. It just hurts all the time and they can do nothing. I then started having muscle/joint/bone/skin pain and all the symptoms that come with fibromyalgia and low and behold I had that. I then started dropping everything my arms were falling asleep all the time. Then randomly I'd loose complete sensation in my legs and be unable to walk or get up its like my legs weren't mine and refused to listen to me. They diagnosed me with peripheral neuropathy but couldn't find the reason. Then I began having severe headaches that usually ended in a grand mal seizure. diagnosis was seizure disorder suggestive of epilepsy. Now I'm having new pain all the time mainly my neck, I'm exhausted from doing nothing and if I do "too much" it results in me being bedridden with a combo of the above issues turned way up. I'm having increasingly concerning neurological symptoms, usually "episodes" of this that go away but I'm having them more and more. I also have weird allergy symptoms some days I'm horribly allergic to something the next 6 months I have no issue with it. This can be food, perfumes, fabrics, animals, plants... anything. I randomly had an allergic reaction that resulted in my upper body being covered in circles about the size of a half dollar and looked like swimmers itch and was insanely itchy. Nothing new brought it on and nothing they gave me helped. It finally went away but each circle left a scar on my body. I've had positive and negative ANA tests positive RN Complement total CH50 >60 was high while c3c 152 c4c 25 at the same test time, my red blood cells are different in size but no anemia and white blood cell count is high, SED rate has also been all over the place over the years. I've seen so many doctors over the years I've lost count and usually I just get more abnormal test results with no answer. Can anyone please please please give me a direction to point my doctors in because they're getting no where and I'm about to give up. I have no quality of life, I went from an active fun person to someone who can't even walk some days and I feel like I'm 100. I can't go out and do anything, I turn all my friends away because I can't do the things they can any longer. My life is not good and its getting worse.

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    Old 06-29-2018, 04:27 AM   #2
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    Re: Help in pointing the DR in the right direction

    I am very sorry to hear that you are going through all this. It cant be fun.

    What type of doctor do you mainly see and is this doctor a specialist? Looking at your list of issues, I would be starting with a very good neurologist. Not a local community doctor, but perhaps a specialist in a bigger University hospital. I dont know what your local area offers, but perhaps you want to travel to a big city and check out the Mayo Clinic or one of the larger specialty hospitals? It might be worth the trip.

    I hope you get some answers. Remember, you are your own best advocate. If you do not like the answers you are getting, keep pushing! Ask for assistance and ask for referrals. Good luck!
    RRMS- dx 05

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    Old 06-29-2018, 01:48 PM   #3
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    Re: Help in pointing the DR in the right direction

    My son was diagnosed with mctd fibromyalgia and reynauds in his junior year high school. What bothers me the most is when they refer to his autoimmune as mild. My son hurts has anxiety and his hands will look like a dead corpse bc of reynauds. He finally got Medicaid in la so we trying to get him rheumatologist but canít get appt till November. He rarely complains so when he says he hurts u know itís bad. I hate how these disease are like the unknown.

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    Old 06-29-2018, 03:28 PM   #4
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    Re: Help in pointing the DR in the right direction

    Welcome to the boards! I am sorry so many and such severe problems have been plaguing you a long time. Your symptoms certainly sound like they could be autoimmune, and I am also wondering if a rheumatologist as well as neurologist has been consulted. Some people with autoimmune problems do not present with textbook symptoms, which makes diagnosis more difficult, but many of yours could be explained by lupus or something similar, and that is what I would focus on. Tachycardia and SVT can occur because of inflammation in the heart's conduction system. The muscle, bone, joint and skin pain are all reported in lupus and similar autoimmune conditions. Severe headaches and seizures can occur from inflammation of the brain (cerebritis), peripheral neuropathy can occur as a result of autoimmune disease and your lab abnormalities are suggestive as well. A university rheum clinic would be the place I would start, with neuro consults to accompany. If that gets you nowhere (you may need a referral from PCP to get in), do consider a Mayo clinic type visit where they work up everything comprehensively within a week usually and give you a diagnosis and treatment plan before you leave. You are very young, have been ill a very long time, and deserve a full-blown workup and some answers. The allergies and chemical sensitivities can go along with this as well. I wonder if your skin lesions that left scars were discoid lupus lesions. You can look up pictures of that online to see if they look similar. If those ever recur, a skin biopsy with immunoflourescent studies can be diagnostic. It would help immensely to have a one page synopsis of your history and symtpoms, and copies of previous lab results to take with you, so the new Drs. are not starting from ground zero. The accumulation of evidence over the years is meaningful. If you have any pictures of your circular skin lesions, that would be invaluable. Something is surely wrong, and you need the right specialists to uncover it and get you on treatment to get your life back. It takes a lot of energy and effort, not easy when you are so fatigued. If you have a friend or family member who can assist you, ask them! Let us know how it goes going forward and keep looking for help-you will find it!

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