NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   Undiagnosed Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/166247-undiagnosed-neuropathy.html)

sorenerves123 03-08-2012 10:44 PM

Undiagnosed Neuropathy
 
After 4 months of blood & urine tests, specialist visits (neuro & spinal surgeon), doctors, physios etc. I was told this morning by my neurologist that my pain was most likely due to "anxiety". I've now been given a referral to see a psychiatrist., I have been in excrutiating pain for over 4 months now and I'm feeling VERY sick and tired of having shooting pains in my limbs while I try to work and sleep. Has anyone else nearly gone insane with not being diagnosed with nerve pain?

I have found a doctor who is going to help me continue my search for the problem, but doesn't really know what to do next given the specialists have given up. Any ideas?

Symptoms:
Started with what felt like bad muscle cramps in right leg - worsened by walking and lying down.
Pain moved to other leg and both hips
Pain now occurs in both arms, hands and elbows
Pulsating nose
Buzzing feet & legs
Numbness in feet
Sudden itchiness - evenings
Headaches
Sore eyes

They've found:
I am rombergs positive (I fall when my eyes are closed)
Mild sensory neuropthay
Folate low (still in normal range)
ANAs in blood
MRI lumbar - pars defect with no obvious nerve compression

Other existing health issues:
Hashimotos thyroid auto immune disease
PMDD - severe PMS

Normal Tests:
Thyroid - normal
Thermal nerve tests - normal
MRI brain - normal
MRI hips - normal
Diabeties - no
Lupus / sphyphilis / HIV - no

pabb 03-08-2012 11:38 PM

Quote:

Originally Posted by sorenerves123 (Post 859277)
After 4 months of blood & urine tests, specialist visits (neuro & spinal surgeon), doctors, physios etc. I was told this morning by my neurologist that my pain was most likely due to "anxiety". I've now been given a referral to see a psychiatrist., I have been in excrutiating pain for over 4 months now and I'm feeling VERY sick and tired of having shooting pains in my limbs while I try to work and sleep. Has anyone else nearly gone insane with not being diagnosed with nerve pain?

I have found a doctor who is going to help me continue my search for the problem, but doesn't really know what to do next given the specialists have given up. Any ideas?

Symptoms:
Started with what felt like bad muscle cramps in right leg - worsened by walking and lying down.
Pain moved to other leg and both hips
Pain now occurs in both arms, hands and elbows
Pulsating nose
Buzzing feet & legs
Numbness in feet
Sudden itchiness - evenings
Headaches
Sore eyes

They've found:
I am rombergs positive (I fall when my eyes are closed)
Mild sensory neuropthay
Folate low (still in normal range)
ANAs in blood
MRI lumbar - pars defect with no obvious nerve compression

Other existing health issues:
Hashimotos thyroid auto immune disease
PMDD - severe PMS

Normal Tests:
Thyroid - normal
Thermal nerve tests - normal
MRI brain - normal
MRI hips - normal
Diabeties - no
Lupus / sphyphilis / HIV - no

I would check out celiac disease, and B12 def.

glenntaj 03-09-2012 06:53 AM

Yes, as Pabb says--
 
--and there's other parts of a work-up that you haven't had, including autoantibody testing for antibodies specific to peripheral nerve.

Most of the "regular" autoimmune collage/vascular/connective tissue diseases can have neuropathy as a secondary effect--do you know what kind of anti-nuclear antibodies (ANA) were found?

And, thyroid issues can cause neuropathy (even if your TSH is now within normal levels).

Take a look at the Liza Jane spreadsheets--a listing of tests for neurological symtpoms--very comprehensive and very good for tracking tests over time:

www.lizajane.org

sorenerves123 03-12-2012 06:01 PM

B12s are fine but I'll definately ask about celiac - although my doctor is starting to think I'm a mental case arriving at the clinics with a new blood test request every week! I've now been referred to see a rehabilitation and sports med doctor who I'm told is great at diagnosing pain where no-one else is able to find the issues.... Hopefully he is Doctor House and can help find my problem. My family, friends and doctors all think I'm crazy :-(

mrsD 03-13-2012 03:32 AM

A positive Romberg's test is indicative of low B12.

Do you know your numerical result? Don't settle for "normal" from the doctor, as the lab ranges are old, and outdated.
You should be at 400 US units at least. And for people with neuro issues, a higher result would even be better.

More on Romberg's test:
http://www.jpgmonline.com/article.as...aulast=Khasnis

sorenerves123 03-15-2012 06:29 AM

I've got all my paperwork from my specialist now.
B12s are fine at 435.
The ANAs detected were "Titre, Pattern 80 Homogeneous" (Screening at tire of 80)

The test results are:
Thermal threshold testing - all within normal limits
Blood Tests (normal):
Haemoglobin 127
RCC 4.1
Haematocrit 0.38
MCV 93
MCH 30.9
MCHC 334
RDW 12.9
WCC 4.8
Nuetrophils 2.97
Lymphocytes 1.34
Monocytes 0.38
Eosinophils 0.03
Basophils 0.03
Platelets 234
ESR 5
Sodium 137
Potassium 4.1
Chrolide 103
Bicarbonate 24
Urea 4.4
Creatine 6
eGFR >90
Calcium 2.23
Corr Calcium 2.27
Phosphate 1.1
Bili Total 8
ALP 66
GGT 14
LD 160
AST 17
ALT 15
Albumin 41
Globulin 26
Vit B12 435
RBC Folate 1623
ACE 27
Glucose Loading Fasting = 5.1 and non fasting = 5.3
Vitamin E 22
Urine EPG 0.06
Urine IFE - fine
Syphilis - Non reactive
ANCA screen - Negative
Vit D - 105

Test results that were slightly out of normal range are:
Total Protein 67* (normal range is 68-85)
Serum Folate 44.2* (normal range is 7-39.7)

Any other clues? I just got blood tested for lyme disease this morning, so waiting for that test result to come back.

I'm going crazy here..... I'm now being asked to go to a pain clinic to manage my pain! And keep getting told I'm anxious and to go see a psychiatrist. I'm really getting so upset about not being able to find this :-( 4 months on and I'm still in pain. It's affecting my job, my life, my weight! When will this crazy pain end?!?!!


All times are GMT -5. The time now is 12:53 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.