Neuropathy questions

[missourimom4]

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

[CCF-Neuro-M.D.-PW]

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

[bengalcats]

i hate to say but i have alot of the same symptoms as you going on now for 15 or more years, i have been to many neuros and recently saw a new one who thiks i may have MS so I had a spinal tap done but do not know the results yet, did they discuss that with you?

[runaround]

Has Behcet's syndrome been ruled out? I watched a show on the Discovery Channel where a lady had very similar symptoms and went years without a diagnosis, and it turned out to be this. It is a form of vasculitis I believe. Just a thought!

[Luke 339]

I dont mean to Hi-jack your thread but I have been trying to post for 2 months now and have not been able to.

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?

[pam ella]

Who did you see at Mass General? I have neuropathy, balance issues, and abnormal MRIs as well. I was prescribed neurontin for the neuropathy.  Hope this will help with neuropathy and burning in legs.  I have those differential diagnosis's as well.

[Luke 339]

I was tested, My Western Blot looked like this

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

[floxie]

did you take any antibiotics?  I have many of these same symtoms after a levaquin (fluroquinolone) adverse reaction.

[Floxie99]

For anyone who has been experiencing these sensations: have you, in the past year, been treated with a fluoroquinolone-based antibiotic (levaquin, tequin, cipro, floxin, etc)? If so, you are likely suffering from a severe adverse reaction to that drug. These reactions can come on long after you are treated, and cause long-lasting pain and other symptoms. Very often those hurt think they have MS, or ALS, or fibromyalgia, or a host of other maladies. They spend thousands of dollars getting MRI, blood and other tests done. Doctors just give them more drugs and tell them it's all in their heads.
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

[Mdawini]

I am a man of 34 years. My feet started burning in December 2005 and up to now my doctor is failing to find the cause. Its now spreading to my hands and its most painful during the night. I recently had a seizure last month and again they took some test and nothing was found. I am waiting to see a neurologist in june. My head muscles are sometimes twitching and pulling. I told my doc but he never gave an answer. My other problems is I am slightly overweight by 20 kg, though my doc said thats not a problem. I had a mild stroke/ facial paralysis way back in 1996 and that side of the face is at times numb

I will be very happy if anyone can give me a clue to my problems and what course of action to take.

Thanks

[fourthechildren]

Although I am in the medical profession, I am responding to you because I have had a similar course of symptoms in the past and was diagnosed with Wegener's Granulomatosis, an autoimmune disorder. I see that you live the Midwest. I would strongly encourage you to seek treatment at a major medical center of your choosing, someplace where you could be seen before 8-12 mnths. That is an extremely long time to wait when you don't know what is happening. I have been on a course of chemo and prednisone and immunosuppresant for 8 years and have recently became active in my disease again. This disease that I have is a subgroup of the vasculitides and prednisone does seem to help.

Don't get discouraged, please keep trying to get someone to listen to what you are saying. Havr you ever had P-ANCA or C-ANCA blood tests done? Good luck.

[babilu]

Hello to all..first time user!
Diabetic for 30 years and unfortunately whenever problems are not diagnosed..diabetic neuropathy always seems to get the blame!  I am throwing this out under this heading ..hoping anyone with symptoms and hopefully solutions can make a suggestion.
Recently had intense pain in upper left back, coming front side to below rib cage..running down left side over front of hip and over pubic bone.  Intense painfor about a week..has subsided some..but is constant pain with emphasis on the front hip bone(to the touch) and at back of hip bone..very sensitive to even a touch. Eating sems to trigger the intense 20 minutes of discomfort!Go figure!  MRI's reveal nothing that would warrant. Dr. is excellent...but admits getting frustrated...mentioned it could be shingles without a rash..as there has never been a rash.
Sound like anything anybody has experienced/or been treated?

If this isn't the ticket, then we will have to blame neuropathy of the solarplexis???? Anybody ever had that?
Sorry if this is not on appropriate site..but nerves are nerves I suppose!
Look forward to some feedback!

[garza]

Male 29 years OLD.

I had 4 cycles of BEP chemo.(cisplatin) Last cycle was over on FEB 23, 2006 ..his is 3 months and 2 weeks ago. I'm suffering from Neuropaty on hands and legs since the 8 weeks ago. I feel somehing strange when I try to move my head down or when I open mi hands and legs, like a electric shock.  I have read articles that is temporarly on most of the cases but in others is not. I'm taking lots of vitamin B ( BIG 50) B-complex.  Do you thing this will go away?.. which is the % of people which they had 4 cycles and they got rid of this?... Does Lyrica can help me?

Thanks man.

[babylou]

I noticed many of you can not get to a neurologist very soon, is it because of a needed referral, on problems with insurance?

[BadComb]

I have taken 40mg of Lipitor for years with no problems.My cardiologist then prescribed 1000 mg of Niaspan,starting with 500 and then 1000 after 4 weeks along with the Lipitor to get my cholesterol lower.I had numb toes, burning arms and hands, hands feel like frostbite, and have trouble walking and taking stairs. It  started after the 1st four weeks of medicine. I am now on 400mg of lipitor for neuropathy and my neurologist says I will never recover. My hands ache always,my left arm is a mess and I stumble when I walk. I am very tired also much of the time. I have now been this way for a year and a half,with no relief in sight.

[tidefan]

Two years ago I started having pain in my right hip and buttock. It has now spread down the right side of my righ leg and in the knee calve and ankle of that leg. I sometimes fell that I am walking in a swamp of mud with rubber boots that make every step a problem. This is the way both legs feel, but the pain is only on the right side. The pain is constant and severe. I have since been diagnosed as having metabollic syndrome and told that I have proximal and peripheral neuropathy because of type 3 diabetes that was only dianosed in December 2005 after several doctors (internist, neuroligist, pain specialist, uroligist, cardio and other specialists have run up thousands of dollars in tests. The consensus is now that I can only treat the pain and there is nor helping reverse the condition. Also, I have taken cipro on and off for the past 20 years for urinary tract infections.  Is there any thing else besides pain medicine to help me? I am a 59 year old educator who does not want to keep using the high pain medication through patches (Fentaynl Transdermal 100mcg/h over 72 hours).  I also am taking amitriptyline at 50 mg at bed time, requip 1 mg at bedtime, 3 30mg tablets of Cymbalta in the moring. In addition I take zetia (10mg at night) and Tricor (145mg) at nigh for cholestorol and Micardis (40mg at night for blood pressure).  Please let me know if anything else can be done for the relief of this pain that interferes with my job performance?