Just Found A Prince Of A Doc!!!

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Mar 25, 2003.

  1. Mikie

    Mikie Moderator

    I had my long-awaited appointment with my physiatrist today. He is very, very knowledgeable about our illnesses. My PC and I just wanted to see if there is something else we could do.

    This doctor took all the time in the world, and asked lots of questions and listened to everything I had to say. He said he would love to have all his patients doing as well as I am. He said he and I are exactly on the same wavelength as far as treating these illnesses. He believes in using what he calls the "shotgun" approach, providing relief for pain and sleep right away using a variety of treatments.

    He uses pain and sleep meds and is a big proponent of the Guai treatment. He said there have been a few who didn't respond, even at higher doses. I don't think any of his patients have been on the Guai as long as I have. He was interested in how long it took for me to see real progress from the Guai. It almost immediately helped the Fibro Fog, but I think it was a year before I could see real progress. He was amazed at how much less tender the normal spots are than usual. My newest spots are still very tender, though.

    He ordered a complete metabolic panel for bloodwork and gave me some samples of Provigil. I need to do some research on this as it is a stimulant. I want to ensure that it doesn't aggravate the seizure problem. He has had some success using it for CFIDS fatigue. If the samples work, he will write an Rx for it. It is on my ins. co's formulary with a $50 co-pay which is about 1/3 the regular cost. Not cheap, but worth it if it works.

    I am so very happy I decided to see this doc. My PCP is great, but he can't possibly be familiar with every illness. My rheumy is good about the FMS now, but rheumies aren't all that familiar with CFIDS. This new doc is very knowledgeable about both. He is very sweet and comforting and his staff are all very nice too. That always impresses me when I see a doc for the first time.

    Love, Mikie

  2. Sweetmia

    Sweetmia New Member

    I too was hopelessly ill until I saw a psychiatrist that specializes in FM and CFS. I have CFS. He has me on Provigil and just started me on Strattera. What a difference these two meds have made. I was on 600mgs of Provigil but have reduced that to 400mgs because of the Strattera--I am grateful every day for this doctor's intervention. Amy
  3. 2girls

    2girls New Member

    So glad to hear you are making great progress with the help of your docs! Specialists in our illness are few and far between in my area (Montreal, Que). My doc spends a whole 5, maybe 10 minutes with me each visit and does not address the symptoms as a whole, but rather "picks" one to put a bandaid on it. I have been through the standard blood tests, MRI and have recently taken a stool sample to test for parasites (they "lost" the 1st samples) so I will get results in early April. I learn so much more about FM/CFS from people here than from my doc. I am considering a visit with a naturopath.
    Well, good luck Mickie and I'm looking forward to reading your updates!

    2girls
  4. sofy

    sofy New Member

    Mike did not go to a psych dr. Her Dr. is for the body not the head. Go look at her post. The spelling is a little different. These are rehabilitation or sometimes called sports medicine dr's. They deal with aches, pains, breaks and the healing of. They usually dont do any hands on but will write the scrip for the physical therapy.
  5. Mikie

    Mikie Moderator

    I should have explained what a physiatrist is because the spelling is so close that confusion is bound to occur. I also believe in psychiatrists, psychologists, and licensed therapists. I've been helped by all three at one time or another.

    I originally saw a physiatrist when I was trying to get diagnosed. The guy was a jerk and not knowledgeable at all about our illnesses despite the fact that he appeared to think he knew everying in the world. This physiatrist has taken it upon himself to learn all he can and he keeps up to date on the latest research and treatments.

    I just read more than I ever care to on Provigil. I have always agreed with Dr. Cheney about traditional stimulants being harmful to our brains. My research reading shows that, while the exact manner in which Provigil works is not completely understood, it involves a much, much smaller area of the brain than other stimulants. It seems to be fairly well tolerated without dependence or building a tolerance to the drug. Of course, there are always exceptions. I did read that it can produce Cocaine-type effects. I guess there have been some cases of abuse. It's been out long enough here and in Europe that I'm not afraid of it. Guess I'll give it a try.

    The only thing that caught my eye in several sources is that patients seemed to get the same results with caffeine, which is much cheaper. I guess the only way to know is to try it. Unlike caffeine, however, it is not supposed to interfere with sleep.

    Love, Mikie
  6. aptsfind

    aptsfind New Member

    When you say guai. Do you mean guaifenisen? I tried that after reading a book on fibromyalgia. I thought it made a difference at first but realized there was no major improvement that made it worth taking all the time.

    But since I read about wheat and gluten and mucus, I realized that the reason why this doctor found guaifenisen to be of some success is because it helps eliminate mucus and wheat gluten is a great promoter of mucus. So if it feels like you have some success try eliminating all wheat and see if you have a lot of success.
  7. tandy

    tandy New Member

    Now i'm really confused!! lol Whats the difference in these professions??easy terms please~
    I thought we were talking of head helpers??
    Thanks much!
  8. sofy

    sofy New Member

    I tried it and got the worse headache I ever had in my life. On the narcolepsy board there are a lot more no votes than yes. Biggest complaint is after a period of time the stupids set in. Like we dont have that already. If it keeps you awake stupid might be worth it. Think of all the stuff you wont have to think about. I also posted here a warning about a guy who went blind in one eye from the provigil. I'll find it and bump it up.
  9. Mikie

    Mikie Moderator

    Evidently this is a remote side effect. It did subside when the guy stopped taking the Provigil. Some have complained of muscle pain and headaches. I figure if they're going to show up, it'll be early on. I really need to address this fatigue thing. As I continue to improve, I doubt I will need something for fatigue permanently, but right now, I do.

    Two other questions addressed here:

    A psychiatrist is an M.D. who can prescribe medications, including the more heavy-duty psycho drugs. He or she also can provide therapy. A psychologist is a PhD who cannot prescribe but is a highly-trained doctor in mental disorders, illnesses, etc., somewhat like a psychiatrist. This kind of doc usually does therapy and leaves the prescribing to another doc. A licensed therapist is usually someone who has a Master's Degree in clinical psychology or some other related field. Social workers are often licensed therapists. All these mental-health workers fit into the different needs of the patient. In some instances, a licensed therapist who is skilled, can be of greater benefit than the M.D. It just depends on the patient and his or her needs.

    A physiatrist is like a physical therapist who is also an M.D. or a D.O. It's a doc who specializes in sports medicine, occupational therapy, body mechanics, etc. It's a little-known speciality but one of great importance to us, especially when we can find a good one.

    The Guai comments: I would wager that most people who go on the Guai treatment do not have anywhere near the info to successfully continue the treatment. There are cases where the Guai just hasn't worked for some, but this is the minority. Failure is usually due to incorrect dose or sals in the regimen. Sals can hide in all kinds of forms and one needs to be ever vigilant in order to keep them out. Aptsfind, did you eliminate all the sals and continue to increase the dose until you flared? The off-label use for the Guai in treating FMS is totally different from the mucus-thinning benefits, although, the mucus-thinning benefit is also good for FMS, especially if one has a chronic bacterial infection.

    Love, Mikie

  10. joannie1

    joannie1 New Member

    I am so happy for you!!! If only I could do the same... I hope that you have great success with him. You truly deserve it.
    Love,
    Joannie
  11. ozgran

    ozgran New Member

    Must be really gratifying to find someone who you can feel so confident in. Love Ozgran.
  12. Mikie

    Mikie Moderator

    He cannot be expected to be an expert in all the specialities and has apologized that he doesn't know more about CFIDS/FMS. He has thanked me for doing all my own research on these illnesses and sharing what I have learned. He is building a library from the material I give him. He provides the scripts for the treatments we decide together that we will try. He truly is an equal partner in my healing.

    This new doc is so refreshing for all the reasons mentioned above in my original post, plus, he has the knowledge my PCP and I lack on treating my illnesses. He also has the kindest and sweetest demeanor I have yet encountered in a doctor.

    Since he thinks I'm already doing most everything he would have suggested, I will probably only see him once again and then as needed. I forgot to mention the oxygen and will bring it up at my next appointment.

    Thank you all for your good wishes. I really appreciate it. I am hoping this helps everyone continue the search for a good doc if they don't have one. There are good docs out there.

    Love, Mikie
  13. teawah

    teawah New Member

    Mikie, you mentioned sals in reference to guai and I am considerring wanting to try the guai so I am looking for all the info I can get. Could you tell me what you mean by sals?

    thanx and cngrats on your new sucess,

    teawah
  14. KayL

    KayL New Member

    Mikie! I've posted (under a previous username, I'm sure you have NO idea who *I* am now. LOL) how much I love my osteo. The first time I saw him, he was represented as a physiatrist. I had no idea what a physiatrist was. My doc is a former physical therapist, now a DO and I love him. I hope you have great results with your new doc!

    Karen