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Neurology (Expert Forum)
Neuropathy questions
This forum is for questions and support regarding neurology issues such as: Alzheimer's Disease, ALS, Autism, Brain Cancer, Cerebral Palsy, Chronic Pain, Epilepsy, Fibromyalgia, Headaches, MS, Neuralgia, Neuropathy, Parkinson's Disease, RSD, Sleep Disorders, Stroke, Traumatic Brain Injury
Neuropathy questions
by missourimom4, Apr 13, 2006 12:00AM
Hello Board,
I have been diagnosed with PN by a neurologist. It is the cause that is the mystery. I have an positive ANA of 1280, elevated sed rate, neg DNA test and have been told even with many symptoms that I don't have lupus. I went to Boston Mass General endoneurology clinic and the doctor is refering me to Mayo to see a immunologist, rhem., neurologist and vascular doctor. My brain MRI showed lesions but very small and bilateral. Differential was vasculitis. I continue to deterioate and I would like some advice as to how to proceed as my appointment isn't for 8-12 months. I have problems standing still(hypotension), ringing in ears, possibly seizures, balance issues, muscle spasms, joint pain, mouth sores, loss of muscle strength, patches of tingling on trunk, periods where my skin turns red and heart races, disorientation, beignign heart palpitations, sensory and motor PN, normal sugar levels and b-12 tests, hypothyroidism that is controled with meds, nodule on thyroid with inconclusive test results, normal chest x-rays, other blood test results are neg except for elevated IgA and usually elavated leukocytes(only slightly) I have tried many meds and usually predisone helps but I can't get a doctor to prescribe without a diagnosis. Please help thanks,
Missourimom4
I have been diagnosed with PN by a neurologist. It is the cause that is the mystery. I have an positive ANA of 1280, elevated sed rate, neg DNA test and have been told even with many symptoms that I don't have lupus. I went to Boston Mass General endoneurology clinic and the doctor is refering me to Mayo to see a immunologist, rhem., neurologist and vascular doctor. My brain MRI showed lesions but very small and bilateral. Differential was vasculitis. I continue to deterioate and I would like some advice as to how to proceed as my appointment isn't for 8-12 months. I have problems standing still(hypotension), ringing in ears, possibly seizures, balance issues, muscle spasms, joint pain, mouth sores, loss of muscle strength, patches of tingling on trunk, periods where my skin turns red and heart races, disorientation, beignign heart palpitations, sensory and motor PN, normal sugar levels and b-12 tests, hypothyroidism that is controled with meds, nodule on thyroid with inconclusive test results, normal chest x-rays, other blood test results are neg except for elevated IgA and usually elavated leukocytes(only slightly) I have tried many meds and usually predisone helps but I can't get a doctor to prescribe without a diagnosis. Please help thanks,
Missourimom4
Doctor's Answer
by CCF-Neuro-M.D.-PW, Apr 18, 2006 12:00AM
Unfortunately, I'm not sure how much I can help you, this site is purely educational and I cannot give you a formal opinion.
In up to 30% of cases of PN, no cause is found, although this number is diminishing over the years with new discoveries and breakthroughs. Without a diagnosis it is difficult to find a treatment, and even then many forms of PN do not have an effective treatment. Kepping fit and healthy, and eating a good diet is important.
More recently, skin biopsy has been used successfully to diagnose and follow treatment of PN - if you have not had this done already they may do this at the Mayo clinic. Hopefully they will be able to help you at Mayo
Goodluck
In up to 30% of cases of PN, no cause is found, although this number is diminishing over the years with new discoveries and breakthroughs. Without a diagnosis it is difficult to find a treatment, and even then many forms of PN do not have an effective treatment. Kepping fit and healthy, and eating a good diet is important.
More recently, skin biopsy has been used successfully to diagnose and follow treatment of PN - if you have not had this done already they may do this at the Mayo clinic. Hopefully they will be able to help you at Mayo
Goodluck
I have been experiencing muscles twitching all over my body (feet, hands, arms, legs, stomach, backetc....). I have also noticed some weakness in my left shoulder and neck area. Left side Mastoid is smaller then the right side mastoid muscle which was not the case before, although shows no sign of weakness. I some difficulty swallowing on the left side, seems like my hyoid bone is popping when i swallow.
I have had 3 MRI's of my head (two with contrast), all normal. I have had an MRI of my spine and neck, normal. I had an EMG and NVS on Feb 1st, both came back normal. I have since had three more clinical neurological exams, normal no loss of strength, no visible wasting (according to him). Had my CK level checked twice in two months, both came back normal. My testosterone came in at 268 and normal range is 280- 680, so abnormal.
My biggest issue is the swallowing problem and the left mastoid muscle being smaller then the right, could low testosterone cause this?
Does loss of strength come before wasting in ALS? Should another EMG be considered seeing my swallowing is bad now? I also had MG blood test done which came back negative, what else could this be if not ALS?
IGM
31++
34 IND
39 IND
41 IND
45+
All the rest were negative.
IGG
39 IND
41++
58+
all the rest were negative.
Supposedly this is not CDC positive but if you count those IND bands as positive which most Lyme Doctors do then yes i have Lyme disease but I am not convinced Lyme can ravage you this badely still. 31, 34, 39, 41 are all Lyme only bands which make me a very good candidate for this disease for IGM. On IGG 41 being positive means i either have had or still have an active infection that is similar to Syphilus, Leptisporosus, or Lyme.
My worst symptom hands down is my swallowing issue, feels like thos muscles are gone on the elft side and only the right side is compensating for it. Scary times Jenny, I am also going to one of the top 3 Lyme Doctors in the country on Thursday of next week so i will start getting answers then hopefully. I have been on Biaxin for about 3 weeks now (1000Mg a day) and it has not touched what i got so far. Who knows maybe i need iV.
I would love to just find out whats wrong with me, i have been sick way to long to not know why i am sick. If you wanna chat more email is ***@****. Talk to you later Jenny.
Luke
The reality is, they have been poisoned by an antibiotic that wasn't thoroughly tested before being released on the public.
If you are suffering these weird symptoms, I suggest you check out the following sites:
www.medicationsense.com
www.fqvictims.org
http://health.groups.yahoo.com/group/quinolones
I will be very happy if anyone can give me a clue to my problems and what course of action to take.
Thanks