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Old 10-23-2007, 06:10 AM   #1
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Join Date: Oct 2007
Location: Pennsylvania
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pnsux HB User
Question New here - Advice needed

Hiya All,

First post on this particular forum. I don't really know if I am in the correct place to find advice for my particular problem but I will give it a shot anyway.

About 7 years ago, I started to develop some pretty weird neuro problems. It started out with numbness in both hands that lasted about 3 weeks and I also noticed a slight difficulty in breathing. These symptoms went away for a couple of months only to have different ones come in their place. Anyway at first, I thought I had something wrong with my lungs so my Doctor sent me to a heart and lung specialist. They performed every test imaginable and told me there was nothing intrinsically wrong with my lungs or my heart.

The lung specialist sent me to a neurologist because she suspected something neurological may be happening. The neurologist gave me and MRI of the brain , a few blood tests, and also an EMG. Everything was normal but the EMG did indicate a slight amount of neuropathy in my hands. At the time I was also experiencing mild muscle aching thoughout my body so the neurologist diagnosed me with Fibromyalgia (go figure).

I was fine for a few months and then "whammo" some more neuro stuff hit me. I noticed that my back started to have a burning sensation. I also noticed that both of my ears started ringing. Then around this same time frame, the bottoms of both my feet started to burn and feel like someone was holding a torch up to them. My fingers on both hands also started burning. It is very painful to say the least. I also noticed another symptom that really had me worried. I noticed that it was becoming more difficult to move my legs. Sort of felt like I was wading through thick cement or something.

These symptoms hung around for about 4 months and then suddenly vanished. It was as though nothing had ever happened to me. At the time I thought maybe I had just gotten some strange virus that attacked my nerves and then went away. Things were fine for a few months until it hit me again and this time I had additonal symptoms again. I noticed that all my muscles begin to tire more easily than normal. I also noticed that all my muscles under the skin would visibly quiver and twitch. I began to experince weakness in both my arms and legs.

There are other horrid symptoms as well (ataxia) but to shorten this I will just mention that these symptoms came and went for the next 7 years up until the current time. However, I have noticed that I have gotten physically worse since this all started. I can no longer do much physical work due to weak arms and legs, plus they get tired easily. Also, this summer I started falling frequently and so my Doctor has ordered ankle braces as my ankles were just "giving out" for some reason.

Instead of going back to the Neurologist who initially told me I had fibromyalgia 7 years ago, I decided to get to the bottom of things and go to a new Neurologist in a bigger town.

This new neurologist suspected that I may have a neuromuscular disorder so they performed way more testing than the first Neurologist did. I had a full-body EMG again, was well as a full spine MRI and brain MRI. Also they just got done doing an SSEP test and a VEP test. Two weeks ago I also had a spinal tap done. Everything came back normal except the EMG...The EMG study was compared against the first one that I had 7 years ago and there has been lots more progression of the neuropathy. Instead of having it in just my hands it is now body-wide. They detected that both my sensory nerves and my motor nerves are demyelinated and damaged. The Doctor who studied the EMG stated that I have senso-motor polyneuropathy for his EMG findings.

Unfortunately, the neurologist I go to now is "clueless" about what is wrong with me. The only reason I know what I do about my peripheral nerves is because I obtained a copy of the EMG report from the hospital and read them myself. The neurologist has never mentioned anything about it to me?

The neurologist called me last night on the phone and told me the results of my spinal tap which is clear and normal. I then confronted her about the abnormal EMG report that I obtained and she did not quite know what to say. I asked her what is causing this severe PN and she is clueless.

I mean I suppose I could handle senso-motor polyneuropathy as a diagnosis but I also am aware that there are diseases that can cause it. I want to get to the bottom of what ails me instead of sitting around here getting more disabled and not knowing exactly what is wrong. I want a name for this blasted thing. Unfortunatley for me, I don't know where to go from here. Should I go seek another Doctor? Should I have a nerve biopsy done, or maybe a genetic test to see if there is a genetic cause?? I don't know what to do from here but I would like a definate diagnosis of something. Can someone here give me advice?

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senso-motor polyneuropathy

 
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Old 10-23-2007, 01:21 PM   #2
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Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: New here - Advice needed

Quote:
Originally Posted by pnsux View Post
Hiya All,

First post on this particular forum. I don't really know if I am in the correct place to find advice for my particular problem but I will give it a shot anyway.

About 7 years ago, I started to develop some pretty weird neuro problems. It started out with numbness in both hands that lasted about 3 weeks and I also noticed a slight difficulty in breathing. These symptoms went away for a couple of months only to have different ones come in their place. Anyway at first, I thought I had something wrong with my lungs so my Doctor sent me to a heart and lung specialist. They performed every test imaginable and told me there was nothing intrinsically wrong with my lungs or my heart.

The lung specialist sent me to a neurologist because she suspected something neurological may be happening. The neurologist gave me and MRI of the brain , a few blood tests, and also an EMG. Everything was normal but the EMG did indicate a slight amount of neuropathy in my hands. At the time I was also experiencing mild muscle aching thoughout my body so the neurologist diagnosed me with Fibromyalgia (go figure).

I was fine for a few months and then "whammo" some more neuro stuff hit me. I noticed that my back started to have a burning sensation. I also noticed that both of my ears started ringing. Then around this same time frame, the bottoms of both my feet started to burn and feel like someone was holding a torch up to them. My fingers on both hands also started burning. It is very painful to say the least. I also noticed another symptom that really had me worried. I noticed that it was becoming more difficult to move my legs. Sort of felt like I was wading through thick cement or something.

These symptoms hung around for about 4 months and then suddenly vanished. It was as though nothing had ever happened to me. At the time I thought maybe I had just gotten some strange virus that attacked my nerves and then went away. Things were fine for a few months until it hit me again and this time I had additonal symptoms again. I noticed that all my muscles begin to tire more easily than normal. I also noticed that all my muscles under the skin would visibly quiver and twitch. I began to experince weakness in both my arms and legs.

There are other horrid symptoms as well (ataxia) but to shorten this I will just mention that these symptoms came and went for the next 7 years up until the current time. However, I have noticed that I have gotten physically worse since this all started. I can no longer do much physical work due to weak arms and legs, plus they get tired easily. Also, this summer I started falling frequently and so my Doctor has ordered ankle braces as my ankles were just "giving out" for some reason.

Instead of going back to the Neurologist who initially told me I had fibromyalgia 7 years ago, I decided to get to the bottom of things and go to a new Neurologist in a bigger town.

This new neurologist suspected that I may have a neuromuscular disorder so they performed way more testing than the first Neurologist did. I had a full-body EMG again, was well as a full spine MRI and brain MRI. Also they just got done doing an SSEP test and a VEP test. Two weeks ago I also had a spinal tap done. Everything came back normal except the EMG...The EMG study was compared against the first one that I had 7 years ago and there has been lots more progression of the neuropathy. Instead of having it in just my hands it is now body-wide. They detected that both my sensory nerves and my motor nerves are demyelinated and damaged. The Doctor who studied the EMG stated that I have senso-motor polyneuropathy for his EMG findings.

Unfortunately, the neurologist I go to now is "clueless" about what is wrong with me. The only reason I know what I do about my peripheral nerves is because I obtained a copy of the EMG report from the hospital and read them myself. The neurologist has never mentioned anything about it to me?

The neurologist called me last night on the phone and told me the results of my spinal tap which is clear and normal. I then confronted her about the abnormal EMG report that I obtained and she did not quite know what to say. I asked her what is causing this severe PN and she is clueless.

I mean I suppose I could handle senso-motor polyneuropathy as a diagnosis but I also am aware that there are diseases that can cause it. I want to get to the bottom of what ails me instead of sitting around here getting more disabled and not knowing exactly what is wrong. I want a name for this blasted thing. Unfortunatley for me, I don't know where to go from here. Should I go seek another Doctor? Should I have a nerve biopsy done, or maybe a genetic test to see if there is a genetic cause?? I don't know what to do from here but I would like a definate diagnosis of something. Can someone here give me advice?


 
Old 10-23-2007, 01:25 PM   #3
Member
(male)
 
Join Date: May 2007
Location: san rafael, ca.
Posts: 80
woondog HB User
Re: New here - Advice needed

Hi there. I feel your pain as one of the Bush's was reported to say.
I would contact the national Peripheral Neuropathy Organization in
Wash D.C., and ask them to print your story with the hope that someone
out there, either doctor or patient, can give you "a name" for your
disease. I have had PN for 25 years and I've never heard of a feast or
famine experience where one gets better for some time, then gets
worse...over the years, of course. What kind of meds are you taking ?
the woondog.

Last edited by woondog; 10-23-2007 at 01:26 PM.

 
Old 10-24-2007, 05:05 PM   #4
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Join Date: Apr 2007
Location: CA, USA
Posts: 161
john449 HB User
Re: New here - Advice needed

As you've discovered these sensori-motor neuropathies are very difficult to diagnose. However you live in a state where there are some very good neuro centers. Can or have you been seen at a University? The Farber Institute connected to Jefferson U. in Philly has done some excellent research. Also there's a neurologist named Mark Brown who, last I heard, was associated with the Neuro dept. at U of Pennsylvania who has done some excellent work in the area of peripheral nerve disease. If you haven't explored this avenue yet I urge you to do so. Good Luck....

 
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