Neuromuscular In memory of Rose Marie.


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Old 06-28-2013, 11:07 AM #1
Yogi Yogi is offline
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Default Multiple diagnoses no doctor helping.

Hello,

I am trying to find answers and wish I could afford the visit to Mayo Clinic I was offered but here is my predicament. I never ever really went to the doctor other then for broke fingers, toes, flu, or cold till the age of 26.

Then one thing after another started happening. Rhemuotiod Arthritis in my Knees at 26, Severe Anxiety and Panic Attacks started at 27 went through a russian roulette with multiple of SSRI's and Xanax/Claudaphine combinations.

Then, I spranged my ankle it never healed was limping for months. I am very athletic or I was and was use to sprangs. One Orthopedic doctor wanted to fuse me right away and said why? He did not give me a cause really. Just from the test of stepping on a board. Then went to a new set of doctors for second opinion and to find out I have a rare case of Pes Cavus foot. My arches never wanted to stop group and naturally wanted to want on the outsides of my feet inward.

Had both feet totally reconstructed and they tried to turn me into a flat foot. After 2 weight bearing surgeries my 1st foot was starting to turn back in after about 6 months. The pedoatrist would not acknowledge it and was suprised to find out I had entrapped nerves. He wanted more surgery and alcohol treatments. I went and got a 3rd opinion from the Pacers/Fever foot surgeon. He wanted to redo me from top to bottom.

Thats when I went to another foot doc and he started me on a adventure of multiple doctors giving me multiple diagnoses but no regiments, no pain killers, no ideas on what to do that I was not already doing from research. Still do not have a 100 percent diagnoses.

I was diagnosed with Chartoc Marie Tooth disease because of all the symptoms. Then I got a answer from the first neurologist stating, I have been fool before but I do not think you have CMT. Great, just what I wanted to hear a I dont know.

Neuropathy had settled in on my feet from traumatic foot surgeries. That was confirmed atleast. Things that could not be answered why I have lost certain sensations to touch, cold, and I had extreme pain electrifying. The fatigue and my endurance would improve in a pool greatly but on land I can not walk more then 5 minutes.

I was asked to do multiple things like vitamins, swim or bike, lose weight, stretch, and have done them all for over a year now. My health is continuing to decline. I am in such pain my cramps have become worst to the poiint I do not sleep and my feet are curling at a faster rate on me.

Nerve pain made its way to my s2 -L5 they want to shot me up with 2 shots at once. I went and had another EMG done by another neurologist and that one read 34, 28 being CMT and 38 being normal. I asked did my numbers decrease showing signs of problems from previous test she said I do not know. She does not have my numbers even though she read my results to me on the intial visit. I am on the 2 of the last 4 test.

I feel horrible, they are looking into heavy metal poisoning and blood. I asked for a genetics test and was told not at this time. Even though every question I asked why is this happening, why can I not feel this, why is my cramps getting worst, why is my health not improving. I do not understand why not just do the genetics test to rule out things.

This is just paraphrasing a lot of my issues. I was approved for Mayo clinic but I can not afford it we are broke. I can not get any assistance such as food stamps, medical, and etc because I make to much I guess for a family of 3 we make a combination of 18 per hour.

I have been diagnosed with Entrapped nerves, Cracked S2-L5, Neuropathy, Pes Cavus, Perphrial Neuropathy, Poly Neuropathy, Chartoc Marie Tooth Disease, Severe Anxiety, Panic Attacks. I can not take much more I am so worried about pasting this stuff on to my daughter. I just want some answers and a regiment.

Disability turned me down 1st time because their is not enough information on my diseases and I am to educated. I have exhausted are funds and put us back into bankruptcy. What can I do? What does a 34 score mean? Can anyone help me I was told I was a case study. You would think their associates would want to get involved on curing me or atleast making me comfortable, or be able to tell me whats wrong.
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Wolbachc (08-01-2014)

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Old 08-01-2014, 12:31 AM #2
Wolbachc Wolbachc is offline
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Wolbachc Wolbachc is offline
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[I am so sorry for all of the things that have happened. My first thought is to contact the biggest medical center near you and talk to a social worker in the hospital part and tell her your story. Also, contact the business office to see if there are any programs that will help you pay for a trip for evaluation. They will also know of resources that are available. You have a very complex case and you need to go to the place that sees the most. God Bless You.
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Old 08-01-2014, 08:58 AM #3
Kitt Kitt is offline
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Perhaps you would benefit from DNA blood testing for Charcot Marie Tooth Syndrome (CMT). It is expensive. Does anyone in your family have symptoms such as you do? Some of your symptoms almost sound like it. I hope you find an answer.
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