Still no change- maybe that is a good thing

At this point, I guess I have resigned myself to the fact that my shoulder strength may not ever return. At three years into my last major attack, I would have thought there would be at least some return, or a small incremental improvement that I would be able to pin a bit of hope on. Nope; nothing is happening. I have pretty much leveled out to being able to do only three push-ups, and they are a struggle. From the first one my arms are shaking so much I doubt I will be able to continue. At the second one I think, maybe I can get up to five this time. At the end of the third one, I know that is all I will be able to do.

And what about that flare-up I mentioned a while ago? Well, so far, I have not noticed any further losses related to it. But, it really has not been very long at that. I hope maybe I stopped the progression of damage with the prednisone. Everything in my neck and jaw has quite returned to normal by the way. My jaw muscles were sore for a few days and very stiff on the right side when I opened my mouth. But all is normal now. I can chew on that side without any discomfort. There is no lingering tenderness in the neck just below the jaw.

Now I just wait again until something else happens. I check my strength every few days. I can tell by my shaky arms and hands that nothing is improving. I just have to hope that it does not get any worse.

Just another weird coincidence with chromosome 17 and CMT disease?

From

http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm


“What are the types of Charcot-Marie-Tooth disease?


There are many forms of CMT disease, including CMT1, CMT2, CMT3, CMT4, and CMTX. CMT1, caused by abnormalities in the myelin sheath, has three main types. CMT1A is an autosomal dominant disease resulting from a duplication of the gene on chromosome 17 that carries the instructions for producing the peripheral myelin protein-22 (PMP-22). The PMP-22 protein is a critical component of the myelin sheath. An overabundance of this gene causes the structure and function of the myelin sheath to be abnormal. Patients experience weakness and atrophy of the muscles of the lower legs beginning in adolescence; later they experience hand weakness and sensory loss. Interestingly, a different neuropathy distinct from CMT1A called hereditary neuropathy with predisposition to pressure palsy (HNPP) is caused by a deletion of one of the PMP-22 genes. In this case, abnormally low levels of the PMP-22 gene result in episodic, recurrent demyelinating neuropathy. CMT1B is an autosomal dominant disease caused by mutations in the gene that carries the instructions for manufacturing the myelin protein zero (P0), which is another critical component of the myelin sheath. Most of these mutations are point mutations, meaning a mistake occurs in only one letter of the DNA genetic code. To date, scientists have identified more than 30 different point mutations in the P0 gene. As a result of abnormalities in P0, CMT1B produces symptoms similar to those found in CMT1A. The gene defect that causes CMT1C, which also has symptoms similar to those found in CMT1A, has not yet been identified. “

Charcot-Marie-Tooth_disease -And early onset Glaucoma

http://en.wikipedia.org/wiki/Charcot-Marie-Tooth_disease

I am making a quick post for this. Some symptoms are similar to HNA/NA, others not. But, there is one "phenotype" of CMT I see that does cause early onset glaucoma. One thing though- the weakness pattern is similar to HNA, but I have not seen any entry for CMT that talks about winging scapulas, of anterior interosseous nerve problems I have had. My guess about glaucoma and HNA, if it is related to HNA at all, no one has taken the time to check into it yet.

Flare-up update

Well, whatever this was, it seems to be over. The first two days of the prednisone I also took ibuprofen. The next two days, I quit the ibuprofen. Now, it seems to be back to somewhat normal- whatever that is anymore. If this was a real flare-up, I guess I will see fairly soon what will happen now. If not- I wonder what it really was.

Possible flare-up

One thing I have noticed since all of this started is that I am very sensitive to any little pain that may pop up, and I worry that it may be the harbinger of further losses in my near future. Here is an example.

For the last couple of days, I have had my usual headaches on my left side, but I have noticed that I seem to wake up in the morning with the headache already going strong. On occasion I have also had some pain travel across to the right side, and sometimes it seems it has been centered in the area of my right jaw. I had begun to wonder if it was related to my teeth, but it seems to move around and be more associated with the muscles of my jaw. About then I notice that my neck on the right also feels quite sore and tender, and my upper shoulder is also beginning to hurt. I think here we go again- what am I going to lose out of this round?

You do not really think much about how simple a thing it is to be able to hold your head up, and turn it from one side to the other until that attempted movement causes you pain- whatever this is caused by. Ibuprofen does not help, and it is the strongest thing I have at my disposal at this point. Then I remembered I still had some prednisone, so I tried that. Prednisone had been prescribed for me to use in the event that I felt an “attack” coming on. The thought is that it might help mitigate the losses by knocking back some of the inflammation of the nerves. Whatever this is, it seems to have helped. Now, I just have to hope that I caught it before much additional damage happened.

You might wonder, and maybe I do at times also- why I do this. Well, one of the first things I realized after I started to get an idea of what I had going on, was that there did not seem to be a lot of good information out there, and there were not any places that told about NA or Parsonage Turner Syndrome from the point of view of the patient. In other words, once I left the doctor’s office, I felt totally alone.

As it turns out, there is a wealth of information, although some of it is not complete, and other parts are a bit misleading. And, even though I felt alone, I knew there had to be others out there- as rare as this is.

This blog lists some of the better sites I have run across as far as descriptions of what to expect in NA or HNA. It also talks about what I have found in my progress or lack there-of, over the years since this started for me. Through it, I have met a few people who also have this affliction in their lives.

You are not alone.

I have links to these sites also. Through them you may be able to contact others who have PTS. Since PTS seems to have an official cause of being an auto immune caused disease, these links go to sites for all autoimmune diseases. There are forums available on these two sites, and there are PTS threads. Or, feel free to start your own. Here are the links again:

The Autoimmunity Community
http://autoimmunitycommunity.org/phpBB/

American Autoimmune Related Diseases Association
http://www.aarda.org/forum2/