Not sure where to turn anymore

0 Recommendations

I am 24 years old, and have been suffering for years now. I have been to gastrointestinal specialist, neurologist, to many general practitioners to count, and several ER's. Yes, I am overweight, 260pd 5'5, no I don't smoke, and no I don't drink. I am asthmatic but have no chol. of blood pressure problems. I have bad vision and wear glasses. I used to suffer from strange headaches as a child, since I was about 5 I would have these headaches that have no explanation and would be complete debilitating, I went to a neurologist for years with no explanation besides I sounds like migraines. I have no light sensitivity at the time of the attack, and no nausea. They went away went I hit puberty. I am not sure if they are related to what is currently going on but I thought I would give a full idea of my history.

At 17 out of no where I passed out in the middle of my tae kwan do class, we assumed dehydration at the time, but things didn't get better. I started to get dizzy in the shower, when getting up to quickly, I would have random attacks of severe severe back pain, then my memory started to go. I was only 17 and could remember what I was saying in the middle of a sentence. My primary at the time diagnosed me with B-12 anemia and started me on injections. She came to this conclusion b/c a test of my levels showed me being very very low. Things were great for a time, then about a year later the memory loss returned, I had been taking regular injections of B-12 biweekly since the original diagnosis. I also started to get severe insomnia, I was awake at one point for 5 nights straight till I finally drove myself to the ER where I was given some sleeping pills and I passed out at my grandmothers sleeping for over 22 hrs. Then everything went away again, my memory returned to normal and I have no issues sleeping.

Around 19 things went further downhill, and have keep going downhill. I meet my now husband, and at first I was fine,then I would be out to dinner with him and vomit up my food for no reason at all, and have horrid bouts of diarrhea, the vomit didn't happen at every meal though so I assumed I had a sensitive stomach. I watched what I ate, yet these strange attacks continued. After years of this I told my primary, I know have a new docter, and yes I still take my B-12 injections, he told me to see a gasteral specialist. This was at the age of 21. Before I could go however I found out I was pregnant and put it off. I suffered a horrible pregnancy, I lost about 20pds and threw up regularly, at 32 weeks I was induced due to preeclampsi , and HELLP. My son Lucius was born @ 4pds even. He was low birth weight even for his gestational age. I ending up being in the hospital 10 days due to a failed epidermal that turned into a full spinal. Of coarse they didn't realize this and I ended up with spinal headaches which were cured with 2 blood patches (worst feeling ever!). The next few months after his birth I felt great. I still went to the gastrointestinal specalist and he thought I might have Chrons or Ciliacs (sp?), a colonoscopy was done and so was blood work, both came back fine, only thing was he said I have hemorrhoids. He diagnosed me with IBS, so now lets tally up all the things my lovely doctors have told me I have...

IBS, panic attacks, insomnia, B-12 anemia, hemorrhoids, & asthma

Then in about June of 2007 things started happening again, this time with new symptoms on top of the old. We had just PCS'd to our new base, when I keep getting dizzy, and vomiting, and having severe fatigue, as well as the runs. I saw countless PCMs here because my doctor was deployed. They ordered an endoscopy, it came back normal. Well I also started having rectal bleeding, they told me it was the hemriod when I went to the ER, yet they found that the hemroid I had wasn't bleeding but still it must be hemroids. Then I became pregnant with our second child, and everytime I got a UTI I felt like my bones hurt, I can't move I can barely walk, and I just want to give up, on top of the fact that my flare ups conti. I actually lost tract of everything I had been saying to my doctor at one point mid sentence. I started to cry b/c I couldn't remember anything. Now they want to test me for MS, and if that comes back negitive he told me oh it must just be depression on top of everything else. And he gave me no explanation for my bone pain, and joint ache attacks, he tested me for arthritis and it came back negative.

My daughter was fine (except for an ABO incompatibility), but about 1 month after she came home I started getting tired again, it seems like I am always tired now, and my memory is nothing to laugh at, I can't even carry on a conversation with people anymore, I get so lost. One of my favorite things to do was debate with people, that doesn't happen anymore. I went back to my doctor, he told me to see a psyciatrist!!! I did and even started depression meds, the meds didn't work, and in fact made me depressed, and the psyciatrist thought I had borderline personality disorder which I took some sort of 3 hr test to confirm...and I don't have it. I can't even do things with my children anymore, and I can't deal with the pain. I feel like my life is falling apart, and there is no one to help. There new thing is testing me for MS, and lime disease. I feel like I am getting nothing but the run around, and no one willing to help me. Does this sound like anything anyone has ever heard of?

The thing you have to realize is I maybe big but I used to hike ride bike, take walks with my husband I was in martial arts for 4 years bf this. Now I am so tired I feel I can barely function. Sometimes during the summer I would just sleep for hours upon hours only to wake up more tired. I would eat and throw everything up, and have the runs that would make me need to find the nearest bathroom. I can barely hold my son for fear of dropping him I feel so weak. I snap on my husband or cry for no reason, I can't remember something my husband just asked me or I forget entire conversations. This was all before and after my pregnancy's. I am just getting so fed up, I can't take the 5-6 different diagnoses they keep giving me. I am about to give up.

This may seem jumbled to you and I am sorry for that I was a through as I could be because I just want someone out there to help that might know what I am going through. The doctors I think honestly don't believe me, the only one is my husband who has been with me for 6 years now. I am probably missing things that are important...but being as I don't know what is wrong I really don't know what is important or pertinent.

6 replies

Go to a rheumatologist. It might be fibromyalgia

I have yet another appointment on the 1st so I will bring this up thank you.

Good luck and take care

first, thanks for helping serve our country through the military. As for the confusing signs/symptoms and myriad of dx, thats often to be expected at first, just dont surrender to the condition, keep checking it out . A psychiatrist is just a member of the team you need to have behind you to get this thing cleared up you have been dealing with. But I would think a neurologist would check on possibility of MS early on, also exposure to anything while overseas, and far fetched CHiari Malformation. Very unlikely, but can have some of the S/S you describe, so could about a hundred other disorders. As for depression and anti-dep Rx, doesnt mean U r crazy, and the increased serotonin responsivity can raise pain tolerance thresholds I have read in several articles. Must be taken regularly and do have a break in period like a new pair of jungle boots, about two weeks. A good relationship with your internist is a your main weapon in the assault on this problem, follow through with the recommendations even if they seem off the mark, that helps eliminate possible bad actors one at a time. After dealing with a conundrum condition Ive had for 23 years with no clear dx yet and Im still kicking enuf to give the gret neices and nephews a hard time on the basketball court, I say stick with it, mind on mission, but keep living your life and the new technology that is available now and in the near future will brign about a resolution before long. Remember your PCP/internist is the tactical officer who can help you best plan this out and move forward. And if you can get that wt. problem to repsond to a few miles a day of slow march or walk in comfortable athletic shoes, that will increase your overall energy level and more effectively metablolize of any Rx you are taking. Stay on this web site for more knowledgable responders than I, many are very specifically helpful.

Thank you LC, my husband is the soldier actually I am just the support. We haven't been stationed oversea's yet (luckily). I have an appointment on the third, where my doc is going to give me a referral for an MRI, and if that comes up neg a spinal tap (which I am not looking forward to at all) to check for MS. I also have a sleep study in a month to make sure I am not suffering from some sort of sleep disorder.

Read your post; of course I would never suggest what could be wrong..
One item in your post struck me...you said you were tested for celiac disease..but from what you write, the tests were not definitive, and some of your symptoms line up with celiac (though not all).
1. a colonoscopy is never diagnostic of celiac.
2. you can be "serum negative" (blood negative) and still have celiac
3. an endoscopy can be indicative of celiac...but must be accompanied by multi-sample biopsies...what this done?
If you want to see the most up-to-date diagnosis path for celiac, go to Mayo Clinic website and search for
celiac testing protocol.

You could also do a blood test thru Prometheus Labs in San Diego (via Fed Ex)...it is a multi-level series including the all important genetic test...

Also, you can have many of the symptoms of celiac and not officially "have the disease" For example you could be what is called "gluten sensitive" -- which in effect IS celiac because it pretty much results in the same thing.

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 348,705 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,781 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You