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Avatar universal

Neuropathy, headaches, vision problems

I have been having all these weird symptoms and no one can figure out what it is. They started July 2006 2 months later, and then picked up again June 2007 and have not stopped yet...
I have panic attacks every day about what it could be...I've thought Lyme, fibromyalgia,...and of course a brain tumor...

I have seen a neurologist, an allergologist, an ENT, an
ophthalmologist, an infectious disease specialist, and of course a
GP...no one can tell me what is wrong with me.  This is what
I have:

- tingling in limbs
- shooting pains all over
- macular edema in left eye (retinal swelling, blurry vision. I have
always had 20/20)
- floaters in right eye
- headaches (not as bad as a few months ago though)
- stiff neck
- pressure in sinuses/forehead, especially if I bend over (I do have a deviated septum)

I had a brain and spine MRI (clear- but that was 1 year ago), CT scan
of neck (clear), xray of neck (clear), xray of chest (clear)...My
blood work shows no autoimmune disease and the only values that were
elevated were lymphocytes, D. Bilirubin and slightly elevated ESR.
Everything else looked excellent. No dr has been concerned by my
bloodwork. I was also tested for mono, syphilis, and other infectious
diseases...awaiting the Lyme test results now.

I am at a loss...all specialists seem to agree that it's 'all in my head'...The neurologist gave me first a rx for Neurontin, then Lexapro, then Zoloft....but I refused to take them for fear of getting hooked, but maybe I should?!

Any other tests I should do?
21 Responses
Avatar universal
Oh, I forgot, they also did the Nerve Conductor test and all was normal.
Avatar universal
     I have the same symptoms, have been through all the medical tests and like you still no diagnosis.  I have also had endoscopic sinus surgery thinking maybe polyps that were removed might be a cause.  I too have a mildly deviated septum that my surgeon opted on to repair because the cat scans were indicative of no blockage.  I am going back to him in a few weeks and am going to insist he repair the septum.  It is the only thing left as everything else checks out totally healthy.  My GP thinks the septum may be pressing on a nerve causing me all of the symptoms.  If you find any answers please let me know as life like this is awful.
Avatar universal
looks like I am in the same boat (or similar one).  No one can figure this out.  I have many of the same symptoms...floaters in both eyes, terrible neck pain, pressure when bending over (i too have the deviated septum issue).  I have such fatigue and neuropathy like sensations with no explanation.  Please reply back if anyone gets an answer.

Thanks
1 Comments
Did you ever get an answer?
Avatar universal
It's not in your head!!!!  If a doc tells you that, you just need to find another doctor.  I too have very similar symptoms with little test findings.  My doc can't explain it but finding a doc who believes that my symptoms are real, even though she can't explain it, definitely helps alleviate the mental anguish of doubting yourself and thinking your "going crazy" based on what others tell you.  My pain is managed w/meds and avoiding any behavior that makes my symptoms worse.  I'm still in a lot of pain but the meds have helped me.  I've had this for 11 yrs and have learned that while I can't change the pain, I can change my perception of the pain.  If it's just harmless pain, I have to some level and trying even harder these days to train myself to ignore all the screaming pain signals going off in my head and keeping my mind distracted helps.  My doc recommended a great book that may be of some help to you, Explain Pain by David Butler.  Hang in there!
Avatar universal
Hi ibk,
Diagnosis of a disease is only possible after a thorough physical examination of the patient. I would like to put down my suggestions as insights to your case, but in no means it suggests a final diagnosis. According to your symptomatology, there are quiet a few possibilities as under;
1. Your history of stiff neck with signs of meningismus with associated headache, pain in limbs with macular edema suggests a possible diagnosis of Tuberculosis infection. I think you need to review your case with scans for a possibility of infective pathology.
2. Have you undergone any investigations that prove that you don’t have any connective tissue disorder like SLE?
3. Less common causes like Thiamine deficiency like Wernicke's encephalopathy can also cause similar symptoms like signs of meningismus, headaches, tingling among others.
I think you should reconsider a neurologist and take a fresh opinion.
Hope this helps.
Bye.
Avatar universal
Count me in too.  I have most of what you described with all normal test results.  I absolutely DO NOT think it's in your head.  Antidepressants have significant side-effects.  Why take them if you know it's not in your head.  Also, I think(I know) many physicians diagnose depression and anxiety as a cause for symptoms when they cannot find abnormal test results.  I think many of them have ego's too big to say "I don't know".  One of my neuro's said he "didn't have a clue" what is wrong with me, which I really appreciated.  It's much better than anxiety etc.... I know what I have is not in my head.  I would seriously consider what Caliber said about infective pathology.  I will say I have a history of bullseye rashes (consistent with lyme disease).  I have never tested positive on a lyme test though.  However, I am considerably improved on antibiotics.  Lyme testing is not very accurate.  So if you live in an endemic area (even if you don't) I would get the opinion of a lyme specialist.  I am also going to get some viral testing done as well.  I have a history of elevated varicella zoster titer.
Avatar universal
An update: lyme test came back negative. In the meantime, I found out I am pregnant...so they had me do the HIV test as well (negative)

Caliber thank you for your suggestions!
1. I have tested positive for exposure to TB according to the tuberculin test. I am an expat living in SE Asia where TB is endemic. However, the xray showed no sign of active TB and was told that my symptoms were not consistent with TB...?!? I also saw an infectious disease specialist and he had me do some bloodwork (hepatitis, mono,....) which were all negative.
2. No. I have not. What kind of tests should they run? Are the nerve tests not good for that? (did those - all fine)
3. What tests should I do for those?


Could it be a circulation problem? My blood is very, very thick (did 2 tests for that) and i am on heparin and baby aspirin for the pragnancy (I am seeing a Reproductive Endo. due to recurrent miscarriages, years ago, not related to the symptoms discussed here)

Thanks again!
Avatar universal
Hi,
I think you need a review on a TB front regarding whether to start medication or not.
A trial of ATT can be done, if response is good then it could be continued and if response is not good, we can stop it any time. But the major concern is that you are pregnant. Discuss with your doc regarding this.
Tests like ANA, ANCA, Anti-cardiolipin antibodies, and Anti-Sm antibodies among others to rule out any connective tissue disorder.
Bye.
Avatar universal
I did the ANA and it was negative. Should I still do the others you recommended?
Avatar universal
Hi,
ANA is a non-sensitive test, but specific test to see if any connective tissue disorder is present. I think you should other test only on recommendations of physician.
Blood been thick also suggest that it could be antiphospholipid syndrome.
The antiphospholipid (anticardiolipin) syndrome (APS) is characterized by recurrent venous or arterial thrombosis (clots), recurrent fetal loss, and thrombocytopenia (a reduction in the number of platelets). Antiphospholipid antibody syndrome can be either primary or secondary to other diseases such as lupus. Pregnant patients who have anticardiolipin antibodies are at increased risk for miscarriage, fetal growth retardation and stillbirth.
Are you pregnant for the first time? Did you have any abortions or still births before?
Bye.
Avatar universal
Hi and thanks again for your replies.

I have had 2 miscarriages, 2 perfectly healthy children (both to term, normal weight, normal and natural delivieries), 2 miscarriages and now this pregnancy, which was not planned, by the way..
I am on the  heparin/prednisone/aspirin/progesterone protocol for unexplained (no cause was found by two different Reproductive Endos) recurrent MCs. I also did IVIG once. But dr says to do nothing about positive TB test due to pregnancy.

To monitor the heparin I did the coagulation test and it shows all normal, except:
Prothrombin Time 12.9 secs (high - range is 0-12.6)
INR 1.18 (high - range is .9-1.15)

Also, looking at my old records, I saw that the Weil_felix work up. showed all normal except for the Proteus OX-K 1:80 (range <1:20-1:40)
but the infectious disease specialist said 'no worries, it's fine'.

Just some extra info.....

Thanks again for your help. Now that I am pregnant I am doubly freaking out because I am afraid whatever I have might affect the baby
Avatar universal
Hi ibk,
The reason to ask you questions was to see if any history is there suggestive of APS. I think you should consult your doctor again and quiz him regarding APS and if required then anti-cardiolipin antibody needs to be done.
Keep me informed about any disease progression and your pregnancy too.
Bye.
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