Degenerative Diseases Community
CIDP, ALS, or Charcot Marie Tooth
About This Community:

This patient support community is for discussions relating to living with degenerative disease.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

CIDP, ALS, or Charcot Marie Tooth

Sorry for doing my own research through the years but I want to find an answer for my neuroligical problems. I am a 48 year old male and my problems started when I was about 41.

My problems started 7 years ago. My initial symptoms were difficulty breathing and a portion of both of my hands became numb. My hands stayed numb for about 3 weeks solid, then it went away.I thought I had lung problems so I was sent to a heart and lung specialist and they gave me every imaginable test. I was told I had zero intrinsic heart or lung problems but they sent me to a neurologist because they thought something neurological was going on. The Neurologist performed and EMG , some blood tests and an MRI of the brain. All was normal except for the EMG which showed a slight amount of neuropathy in my hands. At this same time I was also experiencing aching muscles in most of my body so the neurologist diagnosed me with fibromyalgia and told me I also had neuropathy in my hands.

All my weird symptoms went way for several months only to return again but this time there was additional Neurologic problems. I noticed that both of my ears developed a very loud ringing sound, which has never left me to this day and is constant. Also, at this same time, The bottoms of both of my feet started to burn badly. It felt like somene was holding a blow-torch directly on the bottoms of my feet. I also noticed that my legs started to feel funny or slightly weak. It felt like I was wading through a thick, heavy, cement or something. These symptoms lasted for about 4 months, then vanished as quickly as they started?

Things were fine for 4 or 5 months, then Bamm, all of the symptoms came back plus a couple more. I noticed that the muscles all over my entire body started to quiver and twitch. I could see them twitching under the skin. Also, I noticed that my muscles were tiring easy with simple normal tasks. I could not hold things above my head for very long because my muscles got tired. I also started to experience burning in the fingers of both of my hands. I returned to the Neurologist about 2 years after I first seen him and all as he did was take a couple more blood tests, which all came back normal. I decided to quit going to Doctors altogether, mainly because I was afraid of what was happening to me, or what they would find.

These weird neurologic symptoms did not stay constant and they seemed to come and go for the last 7 years until recently they have pretty well stuck around all summer. I finally decided to get to the bottom of things so I went to a  Neurologist in a larger City. This new Neurologist performed lots more tests... I had another EMG, a spinal MRI, a Brain MRI, an SSEP test, a VEP test, and just recently a spinal tap. All came back normal except for the EMG report. The report was compared against the first one I had 7 years ago and the results of the report stated "senso-motor polyneuropathy"....... It was indicated on the report that there was lots of progression from the first EMG study of 7 years ago, especially of the sensory component.

The Neurologist I have now called me up the other day to tell me my spinal fluid was clear, but she is clueless as to what is wrong with me. All as I know is that my EMG report is not normal and states that I have senso-motor polyneuropathy. I have been tested several times for Lymes, I have been tested for AIDS, Hepatitis C, Vitamin B12 definciency, Lupus, Celiac Disease, and a host of other things that are all normal. I did some checking on this and discovered that there are usually many causes for polyneuropathy. The closest thing I have discovered that resembles what I have is CIDP....... However, there is the possibility of Charcot Marie tooth as well. Because of all my muscle twitching through the years since this started and the muscle weakness, I am also wondering about ALS.

I have been falling lots lately because my ankles simply "give out". The neurologist ordered ankle braces, which I will get in a couple of weeks. But I sure would like a name for whatever is crippling me and cause me all this burning and tingling. I don't know what additional blood tests I can have in order to see if it is CIDP. My Neurologist hasn't mentioned about checking anything else yet so I don't know if they are going to. They were looking for MS with the spinal tap but I did not test positive for that. I don't know what to do from here. Any suggestions would be greatly appreciated.
Related Discussions
2 Comments Post a Comment
Blank
Avatar_f_tn
hello  i know what is pasing for this kind of problems,i think we have kind of same simptoms but i dont have answer about what is this ,i'm tired and scared ,ihopez                                                                                                                                                                                                                        
Blank
Avatar_f_tn
hello my friend, living like that tired of not knowing what is atacking our body and scare not know what is the future for us, i have some of the same simptoms like you and i'm tired of this disease the life can be hard sometime and never we are going to know why ,but we have to be strong and have faith and hope for a better future i read the even asl and some people can stop byself the doctor don't know wy this happen but i hope if i have asl can  be lucky if this stop tempporaly a least and if not what can i do, none i'm sared but i'm tired of this, but even and my worst time whit this i still have faith for a better future i can not do nathing for you but i can be you friend and this journey, because i need friends to                                                                                                                                                                                                                                                                                                      
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Degenerative Diseases Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
Top Orthopedics Answerers
3112530_tn?1342559764
Blank
TheMadMan
Long Beach, CA