Hello All,
I am brand new to this forum, and I've decided now its time for me to tell my story in hopes someone can share an insight or suggestion as to what to do now.
I am a 26 year old mother & wife who has been struggling with issues since I was a young teenager. At 13, I developed GERD, asthma and an allergy to dairy products. At 14, they discovered that I had ITP ( A low platelet blood disorder) and also after receiving a flu shot developed a version of Guillain-Barre syndrome. I have also dealt with back pain and ovarian cysts since about 17. They put me on birth control at 17 to deal with the ovarian cysts in hopes to shrink them, but I believe it only damaged my gall-bladder or liver as now I suffer from serious stomach spasms if I eat anything with grease, fat & even protein and I also have elevated billirubin.
I had a baby 3 years ago, and I actually felt relatively good. I had a seriously large ovarian cyst that started twisting my fallopian tubes a few months after I had my baby, and it required surgery to remove the cyst and correct the damage done to my fallopian tubes.
It was after this surgery, one month, that I was laying on the floor in all over body pain. I felt as though I was coming down with the flu, and waited for that to happen, but instead, the pain didn't really go away and I didn't get the flu. For the last 2 years I have dealt with very confusing and irritating symptoms. I have had the Nerve conduction test done on my arms (To rule our carpal tunnel which I told the doctor I knew wasn't the issue) and after being referred to a rheumatologist he said it was fibromyalgia, with a possible tendency in the future for lupus since my mother was diagnosed at one time with a mixed connective tissue disease of some sort but is now in remission.
At first I accepted that diagnoses since I didn't want it to be anything else. But after a few months I started feeling as though that wasn't the right answer. I started having a bad feeling in my stomach, that I needed to pursue this further. My rheumatologist sent me for a brain MRI to rule out MS (because he said my nerves were very sensitive, even rubbing the top part of my foot would cause tingling), though he wasn't concerned at all that this was it. He never even sent me to a neurologist. He also sent me for a back and neck x-rays which according to the radiologist who read them said I was fine, but according to my chiropractor said that I was obviously malnourished and my bones were showing signs of early arthritis and weakness.
After a year of seeing the chiropractor, it did help my overall pain for a while, but now the pain is back and with a ton of other worrisome symptoms. Often my bones make loud popping cracking noises, as if they are coming out of the joint and popping back in. My hands and feet tingle randomly through out the day. Recently, I have developed twitching that scares and irritates me. When I try to fall asleep at night my body jerks and various muscles twitch and even constrict like having a muscle spasm. I have bad pain in my joints, knees, elbows, shoulders and fingers. The pain in my elbows travels down my arm and causes soreness in my wrists. My one finger I can barely bend at times. I’ve recently become more clumsy with my hands, dropping and tipping over objects more often then I use to. Sometimes I feel if I move wrong, the muscles are going to rip right off of my bones. Often I feel like I have sea legs, weak and in some way disconnected from my body. I have experienced episodes of dizziness that comes and goes for no physical reason. And of course, fatigue, which varies in degree, and comes and goes.
So after listening to my gut, I found a new primary care doctor who referred me for a second opinion with another rheumatologist which ran $3000 worth of additional blood work and FINALLY showed that I have “complement deficiency” WHICH MEANS….. Its NOT fibromyalgia.
She says it means there is an auto-immune disease going on with me, they just have to figure out what it is exactly.
She checked me for sjrogens, lyme, hep, RA, lupus, even celiac.
They all continue to come back negative. And as of Wednesday, I’m getting a biopsy done on my stomach to for sure rule out Celiac disease, though my stomach doctor doesn’t believe its that. He says based on my symptoms he would be more concerned that it’s a neurological issue.
I’m sorry this is so long, but I just needed to tell it all, how it really is in hopes that someone knows or understands what I feel each day, and maybe provide some sort of direction. My rheumatologist says a neurologist will be the next step after the stomach biopsy, but my chiropractor doesn’t believe its MS because of the physical issues and characteristics he sees with my body. Thank you for listening and hearing me out. I'd appreciate any thoughts! Smile
~Boobuggey
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replied May 1st, 2010
Community Volunteer
You need to be seen by a qualified neurologist. You say that your rheumatologist say a neuro would be the next step after your stomach bx (he's got the right answer)..however your chiropractor is not a neurologist so where does s/he get confirmation that it is not MS or possible another neuro issue...my goodness a person can have more than one disease going on at any given time.

Best Wishes,

Zig
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Users who thank zigemyster for this post: boobuggey 

replied May 3rd, 2010
Just saw my rheumatologist today, and she is concerned that my muscle twitches and painful tingling, is more of a neurological issue then a rheumatic disease. I'm so confused, one day I think its lupus (because of the complement deficiency, ITP,thyroid & liver enzyme issues) and then with these newer more irritating symptoms, I think its more of a MS nature.Sometimes my legs get so weak I feel like I can barely walk.But I fight it cause I'm only 26 and feel like I should be doing so much more.But no one really knows, no one has a clue. They just guess at this point and hope that some answers show up soon.At least I have finally found a good group of doctors who believe that I truly have something going on, and want to help me find answers. That has made all the difference in the world. Wednesday I will have the biopsy done, which I don't think is going to show celiac disease. So we'll see what happens after that.
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replied January 31st, 2012
Results?
I came across your post and was wondering if you ever figured out what you have. I'm dealing with the same tests...rheumatoid arthritis / lupus / fibro / ms. Thank you.
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replied July 12th, 2010
boobuggey,
You can have more than one thing going on which unfortunately takes a long time for docs to figure out sometime. I have both lupus and ms. They diadnosed the lupus 6 years ago and the ms 2 years ago. Please keep us up on how your doing. Good luck
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replied September 26th, 2011
Fibromyalgia nonsense
I just need someone to listen to me...have horrible crushing rib pain, arms falling asleep, loss of strength in my hands, extreme fatigue, extremely sensitive to heat, yet also sensitive to cold and one drink gets me intoxicated!!!! The pain is such that it prevents me from sleeping. Went to another doc today and was told I am probably depressed because I have fibromyalgia and should see a psychiatrist to get some anti-depressants...was told my lack of sleeping was a sign of depression...I told her it was a sign that I was in continued undiagnosed pain!!! Ridiculous...I have been labelled fibro and no one will even look any further!!!! I might just go insane if SOMEONE does not listen to me!!!
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replied September 26th, 2011
I just need someone to listen to me...have horrible crushing rib pain, arms falling asleep, loss of strength in my hands, extreme fatigue, extremely sensitive to heat, yet also sensitive to cold and one drink gets me intoxicated!!!! The pain is such that it prevents me from sleeping. Went to another doc today and was told I am probably depressed because I have fibromyalgia and should see a psychiatrist to get some anti-depressants...was told my lack of sleeping was a sign of depression...I told her it was a sign that I was in continued undiagnosed pain!!! Ridiculous...I have been labelled fibro and no one will even look any further!!!! I might just go insane if SOMEONE does not listen to me!!!
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replied February 1st, 2012
Experienced User
Unbelievable! Doctors prescibe anti-depressants like it's aspirin. Find a good naturopathic doctor to help you get to the root of them and treat it using natural therapies.

Good luck
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