JCN: Thanks for the additional info. I forgot to mention that I did have a spinal tap (as you know, I had to remain flat on my back all day and for lunch we had ,of all things, sloppy joe's )

I am glad that they have tests for the condition now; that would have helped me a lot while I was still working. There were two people where I worked (electrical utility) that were given several months off with pay because they had fatigue and the only test they had was a positive epstein barr, which I also had. The company wouln't even let me work half-time because I had complained that I thought my symptoms had been brought on by my demonic boss (I know this is hard to believe, but when he asked why I was going to the doctor so much and I told him that I had pains all over my body and they couldn't find out why, he acted as though that was the best news he had heard in a long time. His face lit up and he walked off absolutely beaming. One reason he might have had it in for me is that I had been one year ahead of him WVU (didn't even know him) and I graduated first in my class and he was on probation. He told me one time that he had my homework, but I think it was really my tests, because we got our homework back.)

I tried to get my doctor to write a letter to them to request that I be allowed to work half-time and he refused to do it because he knew I was going to the gym. When I tried to explain that I was just doing what I could to try to maintain my body and that there were people there with severe physical disabilities, he wouldn't even listen to me. I know that the company had a meeting with him, but I wasn't even allowed to be present. I will never know whether they lied to him and he believed them, or they paid him off, or they threatened him. (In a small town, a large employer has a lot of power) Naturally, when it came time for cutbacks, I got laid off and they kept my boss.

I am not sure whether a comfirmed diagnosis would do me any good at this time if there is no cure. Because I got laid off at age 56, my finances are a problem. I will continue to try to live a healthful lifestyle.

Thanks again, Brady

I think your doctor may have some explaining to do to the state medical board.
If he presented himself to you as your doctor, and then functioned as the company's doctor, he doesn't need to be a doctor.
Your lawyer can help you craft a letter to the state medical board (leave the emotion out of it) that will cause the doctor to have to produce his chart notes, and explain his conduct. If he acted in a way consistent with the state's medical practice act, then great. If not then he needs to be retrained in the duties and responsibilities that go with the privilege of practicing medicine.
I faced the same situation as your doctor eight years ago. I asked the company to put their wishes in writing. Eventually the hospital I worked for fired me for putting the patient's health ahead of the company's short term financial goal (We were talking in terms of just a few hundred dollars). Big whup. Whenever a company dictates medical care it always costs them a lot more in the medium and long term. This company, and your company, lost a valuable, experienced, and hard working employee.
There are evil people in this world. Your former boss sounds like one of them. It is best to put distance between yourself and them, even if it means losing a job. What amazes me is that they persist in treating people horribly even when it isn't in their own interest. I have come to believe that they have a lust for hurting others, and they can't (or more likely don't want to) say no to that lust. What usually happens to them is that they eventually inconvenience someone further up the food chain by their behavior. When that happens they get to experience the same treatment that they have inflicted on others. There is also that small business of having to explain themselves to God after they croak. I'm kinda scared about having to answer for my (mostly) petty transgressions. I can't imagine having to explain to God why I deliberately inflicted pain and took joy in the suffering of others (schadenfreude).
The treatments are coming. Not as fast as we would like, but they are coming. The whole world of viral illnesses and immune system dysfunction has become much more understandable thanks to the AIDS epidemic. All the billions poured into study of that disease are paying immense dividends in the understanding and treatment of these other illnesses.
JCN

JCN: Thanks for your reply. I am trying to just put all that behind me now. I know that hate and anger are among the most damaging things for one's health, but it is hard to let go. I will try to keep up with the advances that are being made in this field.

I do think that my previous doctor was not really that bad of a guy, just misguided.

Best wishes to anyone who has a family member or friends with medical problems.

All take care and thanks again. Brady

Brady, if you know about FMS then you are already aware of CFIDS. It seems to be tied to the TMJ syndrom and was what caused my wife grief for many years. She is fully disabled now around 8 years and we spent three years before that trying to find out what was wrong. We finally connected with a physician in the bay area who made a very welcome diagnosis and got her on the road to semi-recovery. At least now she can get out of bed and has something of an ability to walk and visit and shop once in awhile. Prior to the beginning of her treatments she was bed-ridden for nearly two years.

I must tell you that her physician has since left practice due to illness and she is continuing with the medical regime he began for her prior to retirement. She was taking nearly 75 different meds/vitamins/herbs and "UNKNOWN" to me prescriptions and reccomendations on a daily basis while she was climbing out of the hole and is now down to a substantive dozen or so daily. We made weekly trips to the city- 350 miles one way- for nearly 4 years so she could receive treatment in his clinic. That treatment also included deep-muscle massage, accupuncture, and an infusion (IV) of mega doses of what I called her "Special cocktail".

I tell you all this only to let you know that recovery is there and it IS a ton of effort and a little more that scary. Before this I would never have thought of accepting or watching someone put over a hundred needles all over her body. It works.

She is still on a quarterly (yr.) treatment for the TMJ which has relieved pressure on her neck where the release of seratonin generates and which affects transneural mitigation in some cfids patients.

My wife receives a lot of different newsletters but her research library is huge. I am sure if you use the net you will find lots of reading material. You may also want to start improving your diet immediately. One of the drawbacks of this illness is that it inhibits your body of the natural absorption of nutrients from the food you eat. You may find that you need to start supplementing radically. One thing we found was that different tests were needed to get the results from blood tests. After the first three years of searching and having my little pin-cushion poked and stabbed we found that most clinics don't even know how to test for fms, cfids, limes (also thought to be a culprit) and Epstein-Barr, Lupis or the many other names used for Yuppie Flu. You will find there isn't enough research or money looking into the problem and worst of all you are going to find lots of people think it is all in your head. I did for a long time. The more you personally know about it the stronger you will feel and be when confronting DR.s that don't know what they are talking about and won't admit it.

Read. CHronic muscle pain- Paul Davidson

CFS The Hidden Epidemic- Stoff and Pellegrino

Chronic Fatigue and the Yeast connection- Crook

Quantum Healing- Deepak Chopra

Solving the CF puzzle- Rosenbaum

Prescription for nutritional Healing- Balch



And anything else you can find. Also look at Frobitis, Rheumatism, Arthritis which are all associative.

Good Luck

Frank

Thanks for all of the expert input on this post, a very educational topic and I to will be printing it out.

Doug

I apologize in advance for this off-topic question, but after reading the thread "Nerve damage from shooting?", I thought maybe some of the doctors who contribute here could give me some advice as I have run out of options that I know about. I am not seeking a diagnosis, just hoping that someone can tell me what I should do next.

I am 64 years old and for about 16 years have had some sort of neurological problem that is somewhat like fibromyalgia, but without the pressure points (knots that when pressed cause pain in other parts of the body). I hurt all over and am very easily injured, with what seems to be damage to the connective tissue.

It came on rather suddenly one summer. I was in excellent physical condition: I ran hills, skied, played tennis, swam, rode my bike, hiked, etc. I started having pains in May of that year and by the end of the summer, I couldn't even run.

I also have some numbness in my legs. The numbness in my right leg is in the shin area, and came after a back spasm during which I felt a sharp pain in my right leg all the way to my big toe. The numbness in my left leg is around the kneecap and occurred after my kneecap became very sore for no apparent reason; I couldn't even lift my leg out of bed. Afterwards, I became aware of the numbness; this persists after about 4-5 years.

I have changed personal physicians twice; my present one has tried every medication that he can think of. I have been to two rheumatologists, one at the Cleveland Clinic. I have taken the standard battery of tests, and nothing has showed up positive.

I talked on the phone to a large hospital in Pittsburgh, PA, the closest large city. They told me that "this is not a diagnostic hospital, like the Children's Hospital." When I asked if they knew of any diagnostic hospitals for adults, they said no.

I think my problems were brought on by the stress of my former job. Eventually I was forced to take early retirement and worked for 2-3 years, working in another city and commuting. I then started working on a degree in computer science, but decided that was not helping my health, so decided to just wait it out to retirement. Since then I have been going to the gym and riding my bike to get into better physical shape; that is the one thing that everyone seems to agree is good for everyone. I have improved somewhat over the last few years, but the improvement is like glacial; I am a long way from having a good quality of life. These forums are one of my few sources of enjoyment.

My question is: are there any medical options that I have not pursued?

Thanks for listening. Brady