Discussions By Condition: I cannot get a diagnosis.

23 and ready to give up

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: USAFwife
  • March 15, 2008
  • 04:13 AM

I am 23 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 35 weeks I was induced due to preeclampsi that had developed into 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. Now I am pregnant with our second child, and everytime I get a UTI I feel 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 sry 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.

Oh on a side note I had forgotten to take my B-12 shots for 4 months! Yet when my levels where checked they were completely normal. I have since restarted them just in case.

So these are the symptoms I currently suffer from:
The dates are approx. when they started

**all of these come and then are gone just as quickly, I feel like it is a blitz attack**
bone pain-I can barely walk, or bend my legs (Nov. 07)
muscle aches(age:20)
back pain(age:17)
vomiting(age:19)
diarrhea(age:19)
forgetfulness(age:17)
short term memory loss(age 17)
my vision has begun to decrease markedly(they told me it could be due to the pregnancy)(Dec.07)
rectal bleeding(o6)
mood swings (bf pregnancy)(age 17)
bouts of depression (I have had since I was a teenager)(age 15)
extreme pain in the feet when I have been on them for anywhere from 1/2 hr to hr. (age 20)
insomnia(age:19)

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 the pregnancy. I became pregnant this Oct. 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.

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6 Replies:

  • Sounds like some "fibromyalgia" accounting for some of your symptoms (memory loss, bone pain and muscle aches.. IF vitamin deficiency isnt causing them). Fibro often occurs co-exists in autoimmune conditions such as IBS!. Fibro also often is present in chronic fatigue syndrome, these are over lapping illnesses. IBS also often also coexists in autoimmune issues.. so hence it looks as if you have something autoimmune going on. Dizziness when standing.. could indicate "orthostatic hypotension" Sometimes during the summer I would just sleep for hours upon hours only to wake up more tired. A sleeping issue or a problem like chronic fatigue syndrome would cause that symptom. Insomina also happens in CFS (and many of the other symptoms you mentioned too.. including vomiting and panic attacks for some). Fear of dropping your son cause you are feeling too weak.. is a common CFS symptom. rectal bleeding thou isnt a CFS thing, so IF it isnt caused by your hemorrhoids.. you must have something else and/or going on. I wonder if your gastro doctor has missed something .. inflammatory bowel disease? eg crohns disease or ulcerative colitis?? These illnesses can stop a person from getting the right nutrients so cause deficiencies. Also are autoimmune illness.. so may cause muscle/joint pain etc. but then you said "a colonoscopy was done and so was blood work, both came back fine, " so i've no idea.... anyway.. i suggest you to look up fibromyalgia.. and also just be aware the CFS can also cause most of your symptoms. Did your doctor suggest anything for the IBS? My own gastro specialist has me on probotics and fibro supplements for mine (and avoidance of triggering foods).
    taniaaust1 2267 Replies Flag this Response
  • Did they ever diagnose your low B12 levels as pernicious anemia? This is done by the Schilling test. The reason I'm asking is that with P.A., you are at increased risk for other autoimmune diseases.It sounds like they have checked for celiac disease. I think there are more genetic tests they can do for this, but they are expensive and may not be better than the biopsy.One thing you may want to get checked out is your blood sugar. With the obesity, you are at increased risk of type 2 diabetes (this is NOT an autoimmune disease- only type 1 is), which can lead to other serious medical problems such as kidney disease and eye damage.Another thing that may be worth looking into is underlying thyroid disease. They have probably already checked your TSH and other thyroid hormones, but you can still have a thyroiditis and not know it. So, you might consider asking about having your thyroid antibodies checked or maybe an ultrasound of your gland. There are probably other things they should be ruling out as well, such as cushing's and a host of other diseases. I hope you can find a doctor willing to work with you to get to the bottom of this. While depression is a serious illness that can occur by itself and needs to be treated, I suspect that it is used far too often as a diagnosis when they simply can't find out what's really wrong with the patient.Sorry you are having these symptoms and no answers.
    Anonymous 42789 Replies Flag this Response
  • Did they ever diagnose your low B12 levels as pernicious anemia? This is done by the Schilling test. The reason I'm asking is that with P.A., you are at increased risk for other autoimmune diseases.It sounds like they have checked for celiac disease. I think there are more genetic tests they can do for this, but they are expensive and may not be better than the biopsy.One thing you may want to get checked out is your blood sugar. With the obesity, you are at increased risk of type 2 diabetes (this is NOT an autoimmune disease- only type 1 is), which can lead to other serious medical problems such as kidney disease and eye damage.Another thing that may be worth looking into is underlying thyroid disease. They have probably already checked your TSH and other thyroid hormones, but you can still have a thyroiditis and not know it. So, you might consider asking about having your thyroid antibodies checked or maybe an ultrasound of your gland. There are probably other things they should be ruling out as well, such as cushing's and a host of other diseases. I hope you can find a doctor willing to work with you to get to the bottom of this. While depression is a serious illness that can occur by itself and needs to be treated, I suspect that it is used far too often as a diagnosis when they simply can't find out what's really wrong with the patient.Sorry you are having these symptoms and no answers.They have tested my sugars, normal. My old doc told me I had PA, but never actually did any follow up test to confirm it other than check my levels and find them low. As for other posts, thank you for the responses I will bring up some of the things mentioned at my next appointment. Thank you so much again, at least these will hopefully provide some new routes to research.
    USAFwife 2 Replies Flag this Response
  • Sounds like some "fibromyalgia" accounting for some of your symptoms (memory loss, bone pain and muscle aches.. IF vitamin deficiency isnt causing them). Fibro often occurs co-exists in autoimmune conditions such as IBS!. Fibro also often is present in chronic fatigue syndrome, these are over lapping illnesses. IBS also often also coexists in autoimmune issues.. so hence it looks as if you have something autoimmune going on. Dizziness when standing.. could indicate "orthostatic hypotension" A sleeping issue or a problem like chronic fatigue syndrome would cause that symptom. Insomina also happens in CFS (and many of the other symptoms you mentioned too.. including vomiting and panic attacks for some). Fear of dropping your son cause you are feeling too weak.. is a common CFS symptom. rectal bleeding thou isnt a CFS thing, so IF it isnt caused by your hemorrhoids.. you must have something else and/or going on. I wonder if your gastro doctor has missed something .. inflammatory bowel disease? eg crohns disease or ulcerative colitis?? These illnesses can stop a person from getting the right nutrients so cause deficiencies. Also are autoimmune illness.. so may cause muscle/joint pain etc. but then you said "a colonoscopy was done and so was blood work, both came back fine, " so i've no idea.... anyway.. i suggest you to look up fibromyalgia.. and also just be aware the CFS can also cause most of your symptoms. Did your doctor suggest anything for the IBS? My own gastro specialist has me on probotics and fibro supplements for mine (and avoidance of triggering foods).I looked in the fibromyalgia and that sounds like it fits the bill, I have an appointment with my doctor in 2 weeks so I will have to bring it up with him. Thank you
    USAFwife 2 Replies Flag this Response
  • In addition to thyroid and FMS/CFS look into porphyria also. Because you have had psych and severe abdominal symptoms; this should be looked into. If you do have this disease; there are things you can do to help cut down on the pain you have. Even if you don't have porphyria I think this could help you some... Avoid diets, fasting, low carb diets, alcohol, limit medicines to the least porphyrgenic and use as little medicines as you need (avoid NSAIDs and TYLENOL) , look into hormones, treat infections propmptly with the safer drugs for porphyria. tdwi http://www.porphyriafoundation.com/about_por/overview/index.html http://wrongdiagnosis.com/p/porphyria/intro.htm http://rarediseases.about.com/gi/dynamic/offsite.htm?zi=1/XJ&sdn=rarediseases&cdn=health&tm=30&gps=179_97_1020_500&f=22&su=p284.9.336.ip_p736.8.336.ip_&tt=2&bt=1&bts=1&zu=http%3A//www.cpf-inc.ca/guide.htm http://www.genome.gov/19016728
    TaylorDeelwithit 382 Replies Flag this Response
  • Also check out hypothyroidism and hyperparathyroidism.Here's the website on the latter:http://www.parathyroid.com/parathyroid-symptoms.htmHyperparathyroidism is known as the "moans, groans, stones, and bones...with psychic overtones" disease.Hypothyroidism:http://www.freewebs.com/thyroidThere's a link to a forum on the site as well.
    Anonymous 42789 Replies Flag this Response
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