Charcot Marie Tooth Disease

[TaLLan]

I am a disabled Veteran. In recent years the past 5 my arch began to raise up, my feet began to burn and my arms and legs began to get week. I asked the Podiatrist at the VA if there was a clynical name for this and was told there was none. I went home and typed in the computer high arches, burning feet and found Pes Cavus syndrome. This led me to find Charcot Marie Tooth Syndrome. As I sat there and read My eyes got wide and I said to myself well you have that dont ya. Because I have diabetes the VA doctors are saying that I have daibetic neuropathy I have since learned that DN does not cause Pes Cavus. Here are the symptoms for anyone wanting to know if you have Pes Cavus caused by CMT First it is progressive so as the muscles atropthy the arch and instep of the feet raise up and the toes point down in what is known as Hammertoe Next the tendons and ligaments in the feet start to tighten. This can and in My case does entrap the Peroneal Nerve along with the main artery feeding the feet so that you have pain along the top of the foot and at the same time your feet are ice cold due to lack of blood flow. You will notice that under your toes will turn dark gray to black depending on how bad the lack of blood flow is. The Tarsal nerve runs on the inside of the lower part of you foot juat below your ankle, this can also become entraped causing your big toe to burn and lastly the planter fascitus ligaments become streatched they connect the heel with the ball of the foot. In most cases this causes your heel to burn but in severe cases of CMT the entire ligament burns and at night it may even throb at the ball of your feet { the pad under your toes). As this progresses it climbs up your legs giving you atrophy in your calves and causing a condition known as Stork Legs. also with CMT in severe stages the toes will become red and burn every single time you put your feet to the ground. Also you will notice you have fatigue, not tiredness but real fatigue. After about 5 years it is a struggle to even stand. Sleeping is almost Impossible and you say to yourself Why has this happened to me. It has Happened because Doctors do not want to treat CMT so they misdiagnose it. After all the Doctor does not have to go home and watch you suffer day after day with a genetic anomaly that has cures but No One wants to operate on. I was finally told by the VA they would not test me for CMT, why?, Because it Cost too Much. Oh they did send me to a neurosurgeon who wanted to do back surgery. I told the Neuroquack that I did not need lower back surgery I needed the peroneal tendon and Tarsal tendons released in my feet to restore blood flow and nerve function. He looked at me like I was crazy hmmmmmmmm how dare a patient ask for surguries that might work. So to sum it up, Do Not let a doctor tell you you do not have something you have, become involved with your own treatment and insist that if the doctor seeing you isn't helping you that he or she be replaced. I am going to go back to sitting with my feet burning for a few more years till the damage is too far gone to fix. If this is happening to you Please go get the operations Now

[EZgoing]

TaLLan, you are so right.. we as a patient can NOT let doctors just brush us off. We have a rare disease and it is up to us to learn all we can about it, so we can help educate the doctors who treat us.

We NEED to be our own medical advocates, whether we want to or not, if we expect any level of proper care.

Also, be sure to check out the CMT Association's Medical Alert list on medications that are not good or harmful to us...

http://www.charcot-marie-tooth.org/

Thanks for the post.

Ez

[TaLLan]

The Maintenance and Control of Early Onset Charcot Marie Tooth Disease
By TaLLan


These are my observations of CMT and what is happening in the body and how to control the complications of this disease.

No matter how CMT is started it has several traits which can be stabilized by the use of digestive enzymes along with taking collagen with vitimin C as an activator. It is my observation as a long time sufferer of severe CMT that several things occur. First the digestive tract ie. the colon begins to become rigid thus the essential nutrients and vitamins that the body needs are not absorbed. Along with this moderate to severe constipation occurs. As this happens the pancreas stops making enzymes which can later lead to diabetes. So the first sign to look for with CMT is a foul smelling feces and infrequent bowel movements. You will also notice that as the colon gets worse even the act of sweating has a serious foul odor to it. I have had these symptoms for 15 to 20 years and it got really bad in the past 5 years. Since I started taking Digestive Enzymes my regularity has returned and I am feeling alot more alert because nutriants are now getting into my blood stream. The Enzymes I use are called Daily Essential Enzymes 500mg 2 a day. A bottle of 60 cost 9.95.

Next what happens in the feet and hands with CMT is that the tendons and ligaments begin to lose elasticity due to the lack of collagen. I suggest starting the enzymes first at least a month before the collagen so that when you begin the collagen regieme it will be absorbed better. If your digestive tract is not functioning you can take all of the collagen you want and it will do no good as it will not be absorbed. When the tendons and ligaments tighten up in the feet 5 things happen. You get Pes Cavus, Plantar Fasciitus, Tarsal Tunnel, Peroneal Nerve entrapment and all of the Arteries feeding your feet become blocked off at the tendons. the Tarsal and Peronel nerves being entrapped cause your toes to burn. The Plantar ligament being entrapped causes the bottom of your foot to burn and in severe cases to throb at night. The blocked arteries cause your feet to be ice cold with an ashen look and when you put your feet to the ground the toes and foot turn red. This is all due to lack of collagen making the nerves and arteries entrapped. The kind of collagen you want is Type 1 and 3 collagen with vitamin C added as an activator. you can find this all in one pill. In my case I am taking 4, 500mg gelcaps twice a day always on an empty stomach for better absortion. If I am right and the damage is not irreversable I should see results in 3 months. It is my belief that the earlier a person finds out that they have CMT and starts on Digestive Enzymes and Collagen plus Vitamin C the better the results will be. I hope I have not found this out too late to be of help to me. I am keeping this log to show My results over a six month period and I will keep you posted as to the results.

[EZgoing]

TaLLan, PLEASE keep us posted...

I assume from what you have said in your post, that your digestive tract is back to working order once again? My 'cycle' has been 5-7 days of nothing, and 2 days of hardly getting off the john.. very typical of those with CMT... although not all CMT'ers are affected this way.

I would LOVE to see your log at some point (privately would be fine too), if you would be willing to share...

I am skeptical about any sort of 'recovery' to be honest, but sure as heck would still like to be kept up to date as I have one daughter mildly affected and one grand-daughter (2yr old) that is severely affected... We also have one son that is more affected than I was at his age...

Please keep us informed... and GOOD LUCK!!!

Ez

[TaLLan]

EZ okie dokie then here we go Yes my digestion has returned to normal Yayyyyyyyyyyyyyyyyyyyyyyyyyy. But here is the Good and the Bad of it. when the blood flow is cut off from your feet and hands you notice that the hair on your feet and hands start falling out and also you notice that because the arteries in your hands and feet are pinched off you no longer can see them so basically your feet look ashen and palid. After 3 weeks I have hair starting to grow back on top of my feet and I can see the arteries and veins again which means I have blood flow returning to my feet and hands. My feet are still cold at times but not nearly as cold as they were at times they are positively warm. I got the collagen in the mail today and I have started taking them. With the enzymes fixing my digestion I have allready started getting collagen just from eating so I suspect that with the added collagen I will start improving even better. Now this is Great news but in my case there is a downside and I think people should know about this also.
As the tendons and ligaments begin to become more elastic and the arteries and nerves become untrapped there is a new pain you will start feeling, at least I have as the nerves start firing in places that have been colsed off for years the brain enterprets this as pain. It is a little more intense than the pain from the CMT but you have to remember that your feet and legs are waking up, they are becoming alive again. In all I am really encourged by this and I do believe even in my case this is going to help, remember I am only 3 weeks into this and already I have seen remarkable improvement on a disease that every doctor I have talked to says there is no cure for. As for the new pain because the nerves are waking up, there is an old saying No Pain No Gain. I know I am on the correct tract with this now and again I just started the collagen today EZ but I will continue to keep everyone posted. Also as I said before the sooner a person starts I believe to better they will respond. Today I stopped shuffleing and I started taking full steps when I walk. This in and of itself to me is a miracle.

[TaLLan]

Okie Dokie here we go. I went to the VA yesterday and saw my podiatrist. 2 years ago I was told by the vascular surgeon that both of the major arteries going to my feet were collasped and I had no pulse in them. He then told me that this would never get any better. The podiatrist checked all 6 arteries going into both feet and there is a strong pulse in all 6. Yayyyyyyyyyyyyyyyyyyyyyyyyyyyyy. I do hope people start seeing these post. In my opinion every person who has CMT needs to be on digestive enzymes and collagen 1 and 3. this post is 2 months into this self treatment. So far I have hair growing back on my feet and legs, my digestion is regular again, I can see muscles in my feet and legs again and all of my arteries are working and have a strong pulse. I will keep everyone posted

[TaLLan]

Dear diary today I went to see Dr. Austin Sumner in New Orleans. Finally and Expert in CMT. He told me that I definately have CMT, that it is asymetrical, that it is positivally CMT2 and most likely CMT2E. He is writing a letter to the veterans administration saying that in his Professional opinion I have CMT and need to be tested for it. Yayyyyyyyyyyyyyyyyyyyyyyy now back to the fight with the VA

[adamnowicki]

Where can I find the collagen / Vitamin C pills that you take?

[TaLLan]

the collagen 1 and 3 Plus C can be gotten from any health food store as can the Acti-Zyme digestive enzymes. Good Luck

[TaLLan]

Today is November the 1st 2009, in the past 4 weeks I have had muscles starting to show below my calfs, this is amasing to me because for 5 or 6 years they have been withering away. They are about half the size they should be but they are getting larger every week now. I took the acti-zyme digestive enzymes since May and I took the collagen 1 and 3 plus C for 2 months May and June. I have continued the Acti-Zyme. I am taking 2 a day with water and if I have a large meal I take another. The hair on my legs has filled in all the way to my ankles and is still growing back on top of my feet and toes. It took about 6 years for this to get really bad so I believe in 2 years I will see Great results. I am still getting bad cramps in my calfs and my feet are still cold But when I wake up in the morning they are really warm now. Also I must note that the feeling is comming back to the bottoms and side of my feet. Also the ashen color has gone away and the skin on my feet look a natural color now. As for bowel movements, they still remain normal <--------------Yayyyyyyy. I will have another update first oof December which will be 7 months in for my self treatment with Acti-Zyme digestive enzymes.