1. < Neuropathy

CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD

Posted by GreenGrandma @greengrandma, Feb 4, 2012

It started out w restless leg syndrome, then my feet started burning as I sat at my desk @ work. It got so intense that I could not be in sitting position 5 minutes. Finally had to go to bed 24/7 for 2 years except to pee about 8 times a day. I do not suggest that you do that as your muscles can atrophy. I could still walk but I lost my fluidity of motion, nothing has brought that back. I prayed daily to die, because of God, I never tried to take my life. I now go to a pain therapist. It took about 11 years, to diagnose CMT. (5 yrs. ago) I have gone through hell and back. Physical therapies, paralysis, foot deformities, 11 corrective surgeries but Life is worth living after all. Hope 2 Help!

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barbbie | @barbbie | Feb 6, 2020
In reply to @darlingtondoll "Oh I am so sorry to hear about the death of your husband. My late husband..." + (show)
@darlingtondoll

Oh I am so sorry to hear about the death of your husband. My late husband died almost 11 years ago and I cried for 1 1/2 years every day. I was in therapy with the bishop of my church for two years until I met my present husband. It is a very long journey. Now that you are in pain both me and physically, you may need a lot of support. We are here for you. Just talk to us and maybe will be able to get you through some of the more difficult stages.

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Thank you so much for your kindness and sharing about your journey. It is truly the most difficult time in life in some ways and in other
ways there is also hope for the future. My husband's last four years were tough on him, especially with the dementia and the fear, the unknown, the not understanding where he was, who I was. He was in a home hospice program and I was the main care giver. I had prayed probably four days before he died that God would have mercy on both of us and bring him home. It was so painful to watch and painful for him to go through. Being Christians we know heaven is our home and I felt joy for him and sadness for me.

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Jane | @darlingtondoll | Feb 6, 2020
In reply to @barbbie "Thank you so much for your kindness and sharing about your journey. It is truly the..." + (show)
@barbbie

Thank you so much for your kindness and sharing about your journey. It is truly the most difficult time in life in some ways and in other
ways there is also hope for the future. My husband's last four years were tough on him, especially with the dementia and the fear, the unknown, the not understanding where he was, who I was. He was in a home hospice program and I was the main care giver. I had prayed probably four days before he died that God would have mercy on both of us and bring him home. It was so painful to watch and painful for him to go through. Being Christians we know heaven is our home and I felt joy for him and sadness for me.

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Oh my goodness. Your journey is similar to mine. My husband had dementia for 13 years and also got a rare form of leukemia six years before he died. We also had home hospice. Sometimes he was Dr. Jeckyl and other time he was Mr. Hyde. I never knew what mood he would be in from time to time. But I loved him so deeply that it was a pleasure to care for him. He didn’t like to have anyone else in the house and wanted me by his side all the time. We were joined at the hip. Even with the dementia, he would tell me he loved me several times every day. It was an honor to care for him. He was a great man and we had a very happy marriage for almost 40 years. He was from Paris and we went there frequently. When he was close to the end, I asked him if I could leave some of his ashes in Paris. After talking about where I should do this, we decided that the kids and I would drop them off the Eiffel Tower. Most of his ashes were buried in a military cemetery, but I saved several small bunches and the kids and I dropped them off the Eiffel Tower on Christmas Eve.
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Karen | @edleson | Jan 17, 2022

Do you know which type of CMT2 you have?

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 20, 2022
In reply to @judy1812 "no" + (show)
@judy1812

no

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Welcome @judy1812, Did you mean no, you don't know which type CMT2 you have? Have you been diagnosed with Charcot Marie Tooth Disease Type 2?

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judy1812 | @judy1812 | Jan 21, 2022

Yes, I was diagnosed with CMT2 recently. I don't know anything about types.

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 21, 2022
In reply to @judy1812 "Yes, I was diagnosed with CMT2 recently. I don't know anything about types." + (show)
@judy1812

Yes, I was diagnosed with CMT2 recently. I don't know anything about types.

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Here is an article that talks about CMT2 and might help you learn more -- Charcot-Marie-Tooth Disease Type 2 (CMT2): https://charcot-marie-toothnews.com/charcot-marie-tooth-type-2-cmt2/. You might also find the CMT Research Foundation site helpful - https://cmtrf.org/.

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judy1812 | @judy1812 | Jan 21, 2022

Thanks for providing this information. It is a little difficult to wade through for someone without a medical background, but one thing stood out to me. My neurologist mentioned a loss of myelin. I have had trigeminal neuralgia for several years which is also a loss of myelin. I am assuming I inherited it from my father who had similar symptoms. Back in the '80s they called it "old age". My symptoms became noticeable in my 70's: unsteady gait, poor balance, loss of sensation in feet, hammer toes, high arches, weak wrists and ankles, trouble hanging onto things. I am assuming I have CMT2I.

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1 reply
leonaruehmann | @leonaruehmann | Mar 31, 2022
In reply to @ajp2019 "Looks like there is a definitive test: Found this:-We report a 14-month-old toddler. The child presented..." + (show)
@ajp2019

Looks like there is a definitive test:
Found this:-We report a 14-month-old toddler. The child presented with symptoms such as unsteadiness and ataxic gait along with decreased motor and sensory action potentials of the limbs. As the father of the child was diagnosed with Charcot-Marie-Tooth 1A disease, a genetic analysis of the PMP22 GENE was performed confirming the diagnosis of Charcot- Marie-Tooth 1A in the child, too.
This case underscores the significance of an appropriate neurological assessment.

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My Daughter was diagnosed with the same at 6 years old

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1 reply
kwfinnie | @kwfinnie | Apr 2, 2022
In reply to @judy1812 "Thanks for providing this information. It is a little difficult to wade through for someone without..." + (show)
@judy1812

Thanks for providing this information. It is a little difficult to wade through for someone without a medical background, but one thing stood out to me. My neurologist mentioned a loss of myelin. I have had trigeminal neuralgia for several years which is also a loss of myelin. I am assuming I inherited it from my father who had similar symptoms. Back in the '80s they called it "old age". My symptoms became noticeable in my 70's: unsteady gait, poor balance, loss of sensation in feet, hammer toes, high arches, weak wrists and ankles, trouble hanging onto things. I am assuming I have CMT2I.

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I am thinking my loss of myelin sheath is due to my involvement with autoimmune diseases.

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