Is it my teeth?

A continuation...

2009-06-27T02:14:00.004-04:00

It has been some time since I have posted on here and I apologize, but I have been busy and tired as ever. I have had a request that I provide more information on my AFOs as well as the various types of CMT.

My AFOs are not like most which are custom made to fit your foot. In the past I have had no luck with that kind as they cause me pain in my ankles and heels. The "Blue Rocker" AFOs that I have are bought off the shelf and manufactured according to the size of the foot. The aim of this AFO is to keep the knee relaxed and not locked or hyper extended as mine have often been. The metal sole is rounded up slightly to aid in the heel toe step that is a part of the normal gait. These braces also have a metal/plastic front instead of a back that comes with two pads for each brace that can be taken off and washed in any washing machine to keep them clean. These pads make it much more comfortable to wear in the heat and cold as you do not have to feel the plastic/metal against your skin. I know it is uncomfortable feeling your skin stick to the plastic in the hot summer.

They come with two Velcro strap on the calf which are quite comfortable and I rarely notice them any more. Seeing as how these are not custom made you do need to get a pair of custom orthotics to slip on top of them in the shoe. To me these seem similar to what were in custom AFOs but more comfortable to me.

When I began wearing these AFOs it did feel like I was learning to walk again. I noticed that I was using different muscles to walk (even different ones from the other AFOs). I was told this was because my step was being changed into a normal gait which did force me to use different muscles. I can feel some getting stronger to a point and feeling more alive which is a wonderful thing for me! I noticed that my body kept trying to walk the way it was used to and my knees kept trying to lock in place when I was standing, but the AFO would not let me and over time I have become accustomed to this new way of walking. If I chose to go out without the AFOs and just the orthotics I feel very weak and wobbly.

In my research of this AFO I came across an interesting article ( http://www.allardusa.com/pdf/Egg_Letter.pdf ) which discussed the differences in the Blue Rocker AFO and the Toe Off which are similar although the Blue Rocker is made to accommodate people who need more orthotic control. I would think that the individuals who do not need that much assistance could use the Toe Off as they seem more versitle. Included in the article are various pictures of the different AFOs and their uses.

Doctors

2009-05-06T19:55:00.005-04:00

It is always good to find a doctor that knows about CMT, although this is not always possible. In the case that it is not possible to find a doctor who knows about CMT then your next best thing is to find a doctor who is good at what they do. When you go into your visit it is often a good idea to bring the list of medications that I have previously posted as well as some information on the disease. This way the doctor knows you are prepared and they will know what they need to look up and find more information on. If you go to the Charcot Marie Tooth Association's website www.charcot-marie-tooth.org you can search for doctor's who specialize in CMT within your state. This list is lots of help in finding a doctor who knows about CMT.

It is also best that you see your specialist at least once a year to watch the progression of the disease. They will help you gauge the changes that occur throughout the year. If you do not have health insurance or do not have the money to afford these visits then you can schedule an appointment with the Muscular Dystrophy Associations (MDA) Clinic. You can do a clinic search on the MDA website: www.mdausa.org. The MDA holds a clinic one day a month which is free to people with MD.

CMT is actually a neurological disease, but the MDA accepts CMT patients even though it is not a muscular dystrophy. Any tests that are done at the clinic will be covered by the MDA. They also will cover $2,000 towards assistive devices such as braces, wheelchairs, cains, ect.

DOs and Donts with Medication

2009-05-04T18:25:00.003-04:00

During all of the research with CMT they have noticed that certain medictions have side affects that progress the disease at a fast rate. The list is provided by the CMT Association. If you go to the website you can find a more detailed pdf list that will include how the medications are administed. http://www.charcot-marie-tooth.org/med_alert.php

Vinca alkaloids (Vincristine)

Amiodarone (Cordarone)
Bortezomib (Velcade)
Cisplatin & Oxaliplatin
Colchicine (extended use)
Dapsone
Didanosine (ddI, Videx)
Dichloroacetate
Disulfiram (Antabuse)
Gold salts
Leflunomide (Arava)
Metronidazole/Misonidazole (extended use)
Nitrofurantoin (Macrodantin, Furadantin, Macrobid)
Nitrous oxide (inhalation abuse or Vitamin B12 deficiency)
Perhexiline (not used in U.S.)
Pyridoxine (mega dose of Vitamin B6)
Stavudine (d4T, Zerit)
Suramin
Taxols (paclitaxel, docetaxel)
Thalidomide
Zalcitabine (ddC, Hivid)

5-Fluoracil
Adriamycin
Almitrine (not in U.S.)
Chloroquine
Cytarabine (high dose)
Ethambutol
Etoposide (VP-16)
Gemcitabine
Griseofulvin
Hexamethylmelamine
Hydralazine
Ifosphamide
Infliximab
Isoniazid (INH)
Lansoprazole (Prevacid)
Mefloquine
Omeprazole (Prilosec)
Penicillamine
Phenytoin (Dilantin)
Podophyllin resin
Sertraline (Zoloft)
Statins
Tacrolimus (FK506, ProGraf)
Zimeldine (not in U.S.)
a-Interferon

Allopurinol
Amitriptyline
Chloramphenicol
Chlorprothixene
Cimetidine
Clioquinil
Clofibrate
Cyclosporin A
Enalapril
Fluoroquinolones
Gluthethimide
Lithium
Phenelzine
Propafenone
Sulfonamides
Sulphasalzine

Alcohol used to be on the list as well, but it has been found to not be a progressor of the disease but that it makes certain symptoms worse when consuming it. Some of these symptoms may include poor balance, problems walking, muscle control, and reflex weakening.

Misdiagnosis

2009-05-03T18:06:00.003-04:00

CMT is often misdiagnosed as a few various diseases. Some of these are disabilities like MS, Polio, Fredericks Ataxia, as well as many other neurological disorders. Some patients are even told that some of their symptoms are psychosomatic like: hands or feet feeling hot to the patient, but to the touch they are really cold.

Diagnosis of CMT

2009-05-03T16:28:00.004-04:00

CMT 1B is the second most common type of CMT that is inherited. This is the type that I was officially diagnosed with in 2007 with the blood test. There are many types that can be diagnosed with a blood test, but there are many types that do not have blood tests available. When I was younger they did not have the blood tests and so instead they do a nerve conduction test (NCV). This test consists of a needle being put into you muscle and an electrical impulse is sent to that area. The needle is attached to a machine that reads the speed of the impulse through the nerve to the muscle. This can tell you if you have CMT because there are certain slower velocities that fall under CMT. They also use visual aspects of CMT as a way of diagnosis. These things include the wasting of hand, calf, feet and ankle muscles. On top of that they look for high arches, flat feet, hammer toes (when the toe curl under so that you do not stand on the pad of the toe). I have heard of people having other tests done, but these are the general tests that are done to diagnose CMT.

CMT Type 1A

2009-04-30T12:16:00.003-04:00

Today I want to start off with a little information about CMT Type 1A. For most of my life I believed that I had this type of CMT. Type 1A is the most common type of CMT which encompasses about 60 percent of the cases. This type is inherited dominantly which means that you only need one parents to give you the gene in order for you to have the disease. It usually shows up young on patients and begins with slow running, the development of muscle loss, and weakness in hands and feet. People also tend to develop high arches and often need the assistance of braces or other like devices. Patients rarely end up being wheelchair bound and their life expectencies are no different from the average population.

For further reading on more in depth and scientific descriptions of the type can be found at:
http://www.charcot-marie-tooth.org/about_cmt/causes.php
http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm

A little about me...

2009-04-29T17:33:00.003-04:00

My CMT has affected me my whole life although it never really starting getting bad until I was a freshman in High School. Up to that point I had been in Physical Therapy instead of participating in my P.E. classes and was unable to run, jump, play ball, ride a two wheeler, or skate. These things all slowed me down from my friends, but I still kept going. My freshman year I tried wearing leg braces (AFOs) to help out with all of the tripping I was having due to the high arches and the fact that I have foot drop, where you big toe is lower than the rest of your foot due to a bone movement. This did not work well for me as everything we tried hurt my feet so, finally after a year of trying this I gave up and went back to avoiding stairs and taking the elevator.

In High School I felt very singled out leaving classes early to make it across the large campus in time for my next class and the help I had with extending my test lengths as well as note taking help due to my fine motor issues. By the time I graduated High School I was unable to write for more than 10 minutes without having to put the pen down and relax my hand. I would sit there doing some stretches that I hand learned to help relax the muscles. This has continued to worsen over the past few years and I have learned to type well and use this method more often than handwritting.

After my graduation I also took the time to learn more about my disease and I wrote an essay about it for a college class. During this I learned about the CMT Clinic in Detroit, MI where I decided to make an appointment and see what they had to offer me. Doing this was the best thing I could have done.

By deciding to go myself I convinced my family members who also have CMT to go as well (on a different day). We all learned that we have CMT 1B (I will explain the types in more detail in a later blog). I also was taken to a new specialist who was going to help me out trying on a different kind of AFO. This AFO is amazing and fits perfectly. It helps me walk in ways I never knew I could. (Again I will attach an image on a later date) This leaves me now with the same braces and the same pregression that I am dealing with today. I never know what will happen the next day and it frigtens me often, but I try to do my best.

What is CMT?

2009-04-29T11:13:00.003-04:00

CMT is a disease that affects the nerves in the arms and legs as well as hands and feet. Over time the nerves get hurt and begin sending false signals as well as begin to lose the signals on the way to the area. The nerve damage affects sensation and muscle strength in those areas. There is often evident muscle wasting in the hands, feets, and lower legs. Another common symptom of CMT is a foot with either a very high arch or one that is completely flat. I will provide pictures at a later time of my high arched foot and slightly wasted hands.

The beginning...

2009-04-29T10:50:00.002-04:00

I am new to the blogging world, but with a spinning mind I begin my journey. To explain the title of my blog you need to know what my disability is. I have Charcot Marie Tooth (CMT) disease. From this you may understand part of where I got my title from. My disability have the word tooth in it so, the first thing that people who have never heard of it ask tends to be, "Does it have something to do with your teeth?" This question is something that I hear often and something that most people with CMT have heard at some point in their lives as well. I am here in an attempt to put out some knowledge of what CMT is in simpler terms then all of the medical jargon that is out there. On top of explaining the disease I also hope to point out relevent research on some of the types of CMT. Finally, I want to spend some time also on my personal experiences as well as experiences of others that contact me.