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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 |
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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 |
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 :-(
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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 |
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?!?!! |
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