I have written three prior blog posts about CMT: Charcot Marie Tooth Disease. The disease is also called hereditary sensory and motor neuropathy. In the last post I provided an internet link to the CMT Association. Another organization that is working to find a cure for the disease may be found at this internet link: http://www.hnf-cure.org/.
Since my last writing I have, thankfully, made a lot of progress in my journey to fight the ailment I have wrangled with all of my life. As I have said, in my own personal situation I have osteo-arthritis. And I’m aging. CMT is an ongoing, progressive disease that can seemingly slow down for a while in its progression, and then suddenly, sometimes for no apparent reason, come out of remission and hit me with some new unpleasant symptom. And so it was during December when I landed in the Emergency Room twice for intractable back pain (lower lumbar). The second time they admitted me to do some tests and try to figure out how to quiet the pain.
Doctors are a well-meaning lot. And they do work hard to treat their patients. They also have had a lot of training, and they know much more about medicine and medical treatment than I will ever know. Furthermore, each patient’s journey with CMT is individual. Some start their journey in their youth; some don’t even know they have it until they are old. Some have very minor symptoms, such that those around them are not even aware they are dealing with CMT. Others cannot go about their daily activities without help or special adaptive devices to help them put on their shoes and button their buttons. As I have written, CMT affects a person’s extremities most noticeably. It generally is first noticed in the feet and the ankles, and the person with the neuropathy may be clumsy or have trouble falling down or stumbling. It also affects the hands. In fewer cases it may cause hearing loss and trouble breathing and swallowing.
CMT often causes pain too. Sometimes sudden and debilitating, and other times constant and deep inside. It isn’t at all uncommon, as I personally experienced in December, for it to hit suddenly with an intensity that is intractable. In my case it took some very heavy duty narcotic pain medicines to quiet it so I could breathe easy. In my study I have learned that there may be medicines and activities – and even stressful times – that trigger or bring on the pain. Sometimes, with some medicines, the damage may be irreversible. And as well meaning as doctors may be, few have knowledge or training specific to CMT. Noticeably, of the two internet sites I have provided for more information, you will see that the CMT Association repeatedly says how common CMT is while the HNFcure organization speaks of it as a very rare condition.
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Here is a lesson I learned with my own journey fighting CMT: statin drugs designed to lower cholesterol in a heart patient may adversely interact to the system of a CMT patient and do irreparable damage to their nervous system; and, at the very least may bring on sudden excruciating pain. The surprise for me (and if you have CMT please make note of this) was that statin drugs kick in after 8 weeks of first taking them. I started on a popular statin drug 10 weeks prior to laying in the Emergency Room, writhing in pain. In fact, my pharmacist explained to me that if I was to have side effects from the drug it would not likely happen until around 8 weeks after starting, and that the onset of the side-effects may be surprisingly fast and in rare situations become life threatening. The thing to remember if you suddenly end up in the ER in terrible pain is to think back 8 to 10 weeks to remember if you started a statin drug. That threw me a complete curve ball and I never would have guessed it. Apparently ER doctors and spine specialists aren’t particularly aware of this fact either, because I was the one who figured out the problem for the doctors whereupon they quickly took me off the statin completely.
Unfortunately it takes up to 3 weeks to get the statins out of your system to where the side effects go away. But I noticed a difference within a couple of days after stopping it.
In the meantime I have been doing Physical Therapy (PT) and I have continued my own personal study of the disease. One thing all of the doctors have agreed upon at this point is that I should take the time and make the effort to get up to the Johns Hopkins CMT Center of Excellence in Baltimore for a day. They have a team of doctors, therapists, and specialists who do nothing but CMT. If my insurance approves it, I can go spend a day with all of the specialists who will prod and poke me, read my medical records and test results several years back, and then come up with a personalized custom treatment plan made just for me. Then they help my everyday doctors and specialists back home from that day forward with advice, treatment plans, and the insights of their experience with CMT.
Finally let me say this, and say it loud. CMT can cause pain: a lot of pain; and for no apparent reason. If CMT causes you pain, suddenly or slow onset, don’t let any doctor or healthcare practitioner tell you that you are not really experiencing pain – or that you don’t need the prescribed medications to quiet that pain. Some doctors, however well-meaning they may be, do not understand CMT or the pain it can cause.