Ever since I was 12, I've had health problems. It first started with GERD, Asthma, an allergy to dairy, a bout of Guillain–Barré syndrome & a diagnoses of ITP. I learned to manage all those things & led a relatively normal life as a teenager. When I was about 17, I developed an ovarian cyst which they put me on birth control for but didn't shrink the cyst. At 20, I was back on BC, this time having a severe reaction to the BC with severe stomach pains, nausea, vomiting and severe water/clear diarreah.Today, I cannot eat oats, mushrooms, fat, grease, protein without intense stomach spasms and nausea. I've had a upper gastroscopy which showed some gastritis and multiple ultrasounds which showed my gall-bladder is fine. I've lost about 20 lbs in the last 3 years, which I wasn't overweight to begin with, now I'm 5'5 & 115 lbs. Here's where I'm struggling. In 07, I had a baby, bought a house, my husband got sick, I had a surgery on my fallopian tubes to finally remove that large cyst, and when I as finally feeling better & things got back to normal, I started to hurt. All over body pain like I was getting the flu. 3 years & 2 rheumatologists, 2 neurologists, 1 endocrinologist later, the pain is worse but different.Its not like flu pain anymore.
I get terrible nerve pain going down both arms & legs. My joints crack like they are going to break or pop out of place.Pain in joints. I get strange sensations of cold or hot water running down my legs, twitching and muscle spasms, tingling in hands and feet, weakness in my arms after sleeping, as well as one side of my body falling "asleep" after sleeping. I also get extremely exhausted and night sweats. I've had ALL the blood work done, Its not lupus, sjrogens, lyme, RA, hep, and whatever else they've checked me for. I do have a complement deficiency (mild), high billirubin & they have recently said I have raynods. My mother years ago was diagnosed with having "Mixed connected tissue disease" but has sense gone into remission. I have also had a brain MRI w/o contrast that came back negative for anything. I was in a car accident in May, which has greatly increased the pain in my neck so I just had a MRI done on my cervical spine & it shows a bulging disk. I've wrote to doctors, asking for help - with no response. I've been to so many doctors around here, but all they want to do is give me pills/antidepressants or assume its fibromyalgia, though they even admit that I do NOT have the tender spots. Where I live, honestly, all the good doctors move out of so its hard to find someone who is not overworked and completely exhausted so as to WANT to find my problem & not give up. I'm not hurting because I am depressed, I have recently become depressed on & off due to frustration of not being able to act like a normal, 26 year old mom & wife. And for not having answers.
Does anyone know a doctor in the NY/Syracuse area that would be willing to help & take time to figure this out? Would it be worth having a brain MRI with contrast?
Would it be worth having a lower back MRI to rule out any other bulging discs?
Does it sound more auto-immune-like lupus- considering I have the history there, or more neurological?
Anything would be appreciated, thank you. :)
Not really sure what's going on here but a few things come to mind. With the digestive issues...Have you been checked for celiac or had a pancreas function test? Have you had extensive food allergy testing done? Many people allergic to things like corn have these types of problems. My grandmother is allergic to cottonseed oil (which is in almost everything processed) and spent a long time trying to figure out why she was feeling so bad before figuring this out. It could also be irritable bowel syndrome.
As far as the pain, tingling, etc. goes (and to some degree the digestion problems as well)...this sounds autoimmune to me. I have fibromyalgia and chronic fatigue syndrome. A lot of my symptoms started shortly after the birth of my first child. I have been checked for celiac and the tests were negative. Even though I don't have celiac, I have found that following a gluten-free, cassein-free (the protein found in milk) diet (GFCF) greatly decreases my pain. To start with, I don't think my 'tender spots' were as tender as some doctors think they should be. One doctor told me that basically if she pushed on those spots and I jumped then I had fibromyalgia. I had already been through brain surgery, childbirth (18 hours of labor that ended in a C-section), etc. and have a high pain tolerance level. When she pushed, it definitely hurt but I didn't jump. The neurologist she sent me to diagnosed me by looking at ALL of my symptoms together and seeing how much pain I was in (and for how long) after he put some accupuncture needles in my legs for one of the tests he did on me. I wouldn't rule out fibromyalgia for you. Have you done searches for fibromyalgia symptoms and looked at the symptoms listed on various sites? Whether you think it is fibromyagia or not, you might try the GFCF diet and see if it helps. If they want to put you on Lyrica though, research the number of people who are wanting to sue because of all the problems caused by Lyrica. I have asthma as a result of being on it for three days. Others I've talked to have VERY, VERY serious problems from taking it. I would not recommend it for anybody.
Hopefully some of this helps. With my health issues, I have found that basically I have to do the research, come up with a few things I think it might be, and then have my doctors test me for those things. If I wait for them to think about what could be causing my symptoms and figure it out, nothing gets done.
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