Discussions By Condition: I cannot get a diagnosis.

I don't know what's wrong, need help!

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: lazenby5
  • April 9, 2009
  • 01:38 AM

I am a 40 year old female. I have had numerous symptoms but always assumed they were not related.

I am trying to find out why I am having some of these problems. About 4 years ago, I went through 1 1/2 years of recurring severe mouth ulcers and then I started having swelling and pins and needles pain in the lips of my mouth and vagina(always at the same time). I have dry eyes,always feel like I have sand in my eyes, tears are not being produced according to my eye doc. I have dry mouth and vaginal dryness. I had a hysterectomy but have my ovaries. My skin is dry with the exception of my face which is oilier than when I was a teenager. I have burning and pins and needles in my hands,legs,feet. Carpal tunnel has been ruled out. I am fatigued always, have heartburn/reflux even though take meds for it. I have IBS type problems as well I have pain in my joints and daily headaches and migraines. I have muscle spasms in my calf,feet and sometimes my hands. I am so tired of feeling bad. I have had a test for Lyme disease which was negative. I don't know where to start but am so tired of feeling bad all the time. Don't know if it matters but had Epstein Barr about 9 years ago (was a recurring infection) and not too sure I didn't have it again about 5 years ago. I had a high fever,fatigue,etc. The doctor told me it wasn't the flu but something like it.

The swelling and pins and needle pain in the lips of my mouth and vagina has me stumped. I never know when it will happen or how long it will last. It started about the same time my mouth ulcers stopped. I still have ulcers occasionally but nothing as severe or as frequent.

I have not complained to my family doctor, but when I did try to tell him, he sent me to a psychiatrist all because he saw tears. I tried to tell him I was crying because I felt so bad but he wouldn't listen.

For the dry eyes, the doctor did a slit lamp test and said for me to use eye lubricant that he didn't know why the tears weren't producing. Gyn doc gave cream for vaginal dryness.

I am starting to wonder if all of my symptoms are related and don't know where to go from here or even ideas of what it could be.

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9 Replies:

  • I'm sorry to hear of your troubles-- I'm going through something similar. Check into Sjogren's......maybe even Lupus. This sounds auto-immune to me; you should go see a Rheumatologist. My docs are still trying to suss everything out for me, there can be overlap in the auto-immune family. I do have Sjogren's, which causes the dry mouth, eyes and in some cases vagina. Ulcers and pins and needles and muscle spasms are all lupus signs to me too though.....Don't ignore this and don't allow your doc to dismiss you. I don't know why depression is always the first thing they jump to-- anyways, some auto--immune disorders actually causes the depression. Best to you.
    Harmonium 322 Replies Flag this Response
  • I have Scleroderma and many of my symptoms are like yours. Lupus and Scleroderma have some things in common, too. Both are autoimmune diseases. A rheumatologist is the kind of doctor you should see,but not all rheumatologists are very familiar with Sclero and I've heard the average time to get diagnosed is 8 years. I was lucky, though, and was diagnosed right away.There is a wealth of good information on the International Scleroderma Network with doctors' articles and information from doctors who specialize in Sclero. Some Lupus patients also go there. If you read other information on the internet on Scleroderma, it often is way behind the times! There is a lot more hope for sclero patients than there once was, and many new treatments. I don't know whether it's okay to give website addresses, but if it is, here's this one: http://www.sclero.org/index.htmlThere also is a list of doctors, worldwide, who specialize in this disease and it sounds as if you need a specialist. If it is an autoimmune disease, they typically are hard to diagnose. Good luck to you.
    Anonymous 42789 Replies Flag this Response
  • I went to a neurologist and he tested for sjogren's antibodies. It was negative but everything I have read said that is common and the lip biopsy and tear test needs to be done. This doctor dismissed it since the blood work was negative. The opthamalogist did the slit lamp test and said my eyes were not producing tears but didn't know why and told me to use eyedrops as needed. so what tests are done to really diagnose sjogren's, lupus, and scleroderma?
    lazenby5 9 Replies Flag this Response
  • I am also curious if another symptom would be related or nothing to mention to the doctor. A few weeks ago, I had a really sharp pain in my finger and then the area where the pain was turned black. The neurologist said it was a small blood clot and nothing to worry about. Since then I have had the same in my feet. I know my mom has a history with deep vein problems in her legs. She used to have one that would shoot blood, never knew when it would happen. I'm not sure what it is she has. Should I mention that to a different doctor?
    lazenby5 9 Replies Flag this Response
  • This is due to certain minerals shortages among them iron, but do NOT take iron as it may not help or even may contribute to worsem all.The underlying problem could be detected through a complete blood test. If you have one I will be happy to help you.Sean B.
    shahramber 6 Replies Flag this Response
  • This is due to certain minerals shortages among them iron, but do NOT take iron as it may not help or even may contribute to worsem all.The underlying problem could be detected through a complete blood test. If you have one I will be happy to help you.Sean B. I'm assuming you're talking about the blood clots? or all of my problems? I have had a metabolic panel,lipid profile,CBC,B-12, sed rate done. I know my hemoglobin was good. Some of these tests were done last year. Sed rate was 4. I looked at some blood work I had done 9 years ago and my sedrate was 15. I don't know exactly what you want to know. I know my red blood cell count is low. But doctor wasn't concerned. Also, the blood work was done but it was not a fasting blood work panel. I'm wondering if I should request it be redone as a fasting blood work.
    lazenby5 9 Replies Flag this Response
  • I am not concerened about Hemoglobin, I need to see your CBC and any other tests like, liver function, urine test if you have, you may scan them and email the files or I can provide you with a fax number.. ThanksSean B.
    shahramber 6 Replies Flag this Response
  • I am not concerened about Hemoglobin, I need to see your CBC and any other tests like, liver function, urine test if you have, you may scan them and email the files or I can provide you with a fax number.. ThanksSean B. Maybe I'm missing something since I'm new to this board. The member list and private message has been disabled and I don't see any link to email you. I can fax or email doesn't make any difference other than I will have to go to a fax machine. Don't have one at home. I placed an email link below my name. Do you want the blood work from 9 years ago as a comparison or just the most recent within the last year? Thanks in advance!Stephanielazenby5@comcast.net
    lazenby5 9 Replies Flag this Response
  • I will seek another physician as being blown off as depression to rule out anything. Many years ago, I had a RF factor done because I had a "tick" in my right hand. The doctor that I went to had done surgery on my hands for Carpel tunnel and said that "tick" usually was a early symptom of rheumatoid arthritis. It was negative. The "tick" went away years later.My mom's side does have a history of rheumatoid, but my mom doesn't have it.The ulcers I had were only in my mouth, never had any lesions in vagina area. When the pinching/swelling of my lips of mouth and vagina started, it was during a an ulcer outbreak but the was the last time I had ulcers other than the occasional one or two. Now it only causes the terrible pinching and swelling, almost like angio-edema. Have never been able to come up with any allergy,but never know when it will happen. It's almost like this latter symptom took the place of the ulcers. The ulcers I had were painful. I noticed that on one Lupus page, the ulcers were not painful.I do have one node in my neck that stays swollen and one under my chin. They never go away just get varying degrees of swelling.Anyway, I will be seeking out a different doctor and since I've already been sent to a psychiatrist, if the next doctor trys to send me to one that will be another one to rule out.I know Lyme is rare. My father in law and sister in law live next door. Have never found a tick bite or rash and both had Rocky Mountain spotted fever. I had one tick in my hair and a few years ago had a large bull'e eye on my arm but never saw a tick. I thought is was a spider bite. The ER doctor said probably a tick. My SIL's IGG on the Rocky mtn.spotted fever was negative and they did a different test and showed positive. they tested me with the IGG test and said there was no other test for Rocky mtn. spotted fever. So I'm confused. I did have a spider bite last year that I was given a paper from the ER on brown recluse and black widow, although the bite was consistent with brown recluse, I didn't have the spider so couldn't say definately. I was lucky and never had the bad reaction, just ended up with a dime size scar on my elbow. All of my symptoms,started before the spider bite and some before the tick bite.My joints have gotten worse and I will have my index finger turn red and swell, I lose my grip and drop things even it I'm writing with a pen somtimes. Thought I was having the carpel tunnel again but it was ruled out. Joint pain has gotten worse in my hands and moved up to my elbow. My right wrist hurts to even wash my face or put makeup on, to lift a tray to make toast,etc. I did hurt it but was told it was a sprain. That was 6 months ago and pain has gotten worse and moved up to my elbow and don't have to be doing anything for the pain to get worse or the swelling and redness to start. I have pain in my shoulder as well but without knowing other symptoms that doctor only treated my shoulder.Anyway, I will go to another doctor and carry a list and let them do whatever. I have gone to individual doctors and they treat individual symptoms. I have had a MRI of my neck and lower back only, no CT scans or scans of my head and/or rest of my body.Where my dad lives, finding ticks is like finding dirt. My dad developed Bell's Palsy aobut 2 years ago and it has never gone away. HE woldn't get tested for Lyme disease even though a doctor suggested it after many rounds of antibioitcs and stroke was ruled out. I keep reading that Epstein-Barr can recur but is uncommon but I have had recurrences even though always tested negative for mono. I have read it can cause problems later on but rare as well. For years I blamed fatigue on it and didn't seek help. That was about 9 years ago that I had another recurrence and a few years after that I had another similar recurrence but didn't have blood work to confirm but was told it wasn't the flu, but something like it. The doctor actually said I don't know what it is but it's not the flu but didn't order any bloodwork. It's all very discouraging.
    lazenby5 9 Replies Flag this Response
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