Neuropathy, headaches, vision problems

[ibk]

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?

[Greeneyesoutherngal]

Did you ever get an answer as to what is was?  I am dealing with very similar symptoms for one year now.  

[bradbb]

sorry to hear this YOUR ARE MOST LIKELY A VICTIM OF FLUOROQUINOLONE ANTIBIOTICS LIKE CIPRO LEVAQUIN OR AVELOX. They cause a host of diseases not referred to as Fluoroquinolone associated Disability. You should shave a skin biopsy done to prove you have small fibre neuropathy (you may also need to have a sweat gland biopsy done if the other test comes back close to negative) The symptoms you  describe fall exactly into the classification for this group of diseases ,sorry for all of that

[bb_bunny]

Please let us know if you found a solution I have been dealing with the same symptoms for years and have not gotten anywhere - it is getting worse.

[Shancovery]

okay, so I have had the same stuff happening to me and I am in the process of seeing a cardiologist and going through another sleep apnea test, another blood test and getting my anxiety meds readjusted etc. I have done some of my own research here and found some interesting stuff and its on the news as of RIGHT NOW. what i believe i am experiencing and possibly you and a lot of us is STRESS... nervous anxiety, or Neurasthenia and most popularly call AMERCANITIS. it sounds highly insensitive of me to say that about myself, but I have PTSD, complicated bereavement, nueropathy, migraines and I have been having pain in my jaw and neck... I had swollen lyphm nodes recently and pnuemonia... I also find myself on my PHONE and INTERNET way too much through work, with family DRAMA and just to pass the time and this is stressful as well! I need a technology detox and I am sure that most of us do. I will go through with the tests, however I think that I am just STRESSED. My muscles are tense all around my neck and back, my arms and my hands are numb and tingly. blood flow is not good. I think, good ol fashioned exercise, healthier diet, less computer, tv, phone and family drama and more quiet time will probably do the trick. learning SELF CARE. Oh and one more thing SLEEP. do you you go to bed with the tv on, looking at your phone? don't do it! soothe yourself with a bath, lotions, or soft music and try to just be. Its hard, but I think its worth it... GOOD LUCK!

[yelad77]

Hey ibk I know your post was from years ago but did u figure out what it is?? Please I'm going through the same thing post radiation and chemo. Or anyone I didn't read the rest of the posts but if anyyone can read that first one from 08 and help me the doctors won't that's for sure.

[Barbie155]

I have been diagnosed with Diabetic  Neuropathy it is the last disease you get when you have unstable sugar levels,
It is one of the most horriblest pain I have ever had.I have lots my senses for telling between hot and cold , when I want a coffee i get someone to check if I can drink it.I was  wanting to know what other treatments then narricotes I  am on morphine then my DR Stupid takes me off well you all know what happens yes i went nuts from the pain.
I read that this the last thing for a diabetic can get, but looking back I am remembering littleness things  that was so prominent when I went off the morphine the God there was a Doctor on , who knows about DNP,
So if anyone knows any other way to get this under control I would be very Happy something I am not.

[yetzabee1]

Im new here and not sure if i should be posting in this section, but i like calibers answers so im going to give it a shot, i got sick july 2007 with stroke like symtoms and right eye sight seemed to lose control got small and became watery my right arm became tingly and tight and so did the whole right side of my body, the left side became numb and skin hurts to touch. the first mri showed a small lesion of 4mm 2 months later i had 3 more done and they showed no lesion, 4 months today my eye is not as bad but the symtoms in my body remains the same, i had my eye checked and the optic nerve is fine the eyes are fine, tomorrow i will have the vision field test, so far everything is normal. The mri's were to rule out cancerous tumor i guess, no mention of ruling out ms, but that is what the nuero said my symtoms sounded like, do you have any suggestions for me?

[ibk]

I am back with some more blood test results:
Anti-RNP Negative
Anti-SM Negative
Anti-DSDNA Negative

And .....
Anti-Cardiolipin IgG 20.58 (20-80 is low to intermediate positive)
Anti-Cardiolipin IgM 21.53 (20-80 low to medium positive)

I brought my results to a rheumatologist and he does not think it is lupus, he is leaning towards APS. He asked me to come back tomorrow with ALL my previous test results.

[Caliber2005]

Hi,
If you asked me about prothrombin report and other coagulation test, they suggest they are normal and moreover they are part of disease pathology (APS). Hence some abnormality is expected and these values are also near normal.
I think you should consult a rheumatologist, cardiologist and continue with your physician.
Keep me posted.
Bye.

[ibk]

Thank you Caliber! You have no idea how helpful this is.
So, no thoughts about the coagulation and proteus results?
Is my history suggestive of APS?

Anyway, I have made a list of options/tests  and will bring it to dr appt on wednesday. I get an ultrasound every wednesday to check on baby and all is perfect so far (11 weeks along).

I assume you are a dr, beacuse you know so much! What other specialist do you recommend I see next? A rheumatologist? A hematologist? A cardiologist? I am missing those! LOL

Thanks again!

[Caliber2005]

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.

[ibk]

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

[Caliber2005]

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.

[ibk]

I did the ANA and it was negative. Should I still do the others you recommended?

[Caliber2005]

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.

[ibk]

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!

[patsy10]

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.

[Caliber2005]

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.

[b4peace33]

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!

[gismatrix]

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

[Greeneyesoutherngal]

Did you ever get an answer?

[ripstone]

     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.

[ibk]

Oh, I forgot, they also did the Nerve Conductor test and all was normal.