Re: Rheumy update (long and a little winding)

[Guest guest]

He seems to think the headaches are not related to the Stills...I guess we will see

Dear Kirk,

I hate when doctors say stuff like that. First of all, they don't really know exactly what stills is - how can they say that any symptom isn't related to Stills. Whenever I have a complaint and my doctor says "that's not because of stills", I just ask the question on this loop and I immediately find someone or several people with the same problems. It seems to me if you find several people with the same disease with the same symptoms, well --- doh --- must be related. Now, I am not a doctor, nor do I play one on tv, but this just seems to make sense to me. Wouldn't it be nice if all the rhuemy's who have still's patients just checked us out on occassion to see exactly what our symptoms really are, not just what the books say!

As far as headaches.... When I got stills, I was healthy as a horse. I worked out regularly, I ate a good diet, I had my own business and I had plans to move to Florida after living my whole life in the midwest. Stills hit me hard and fast (although when I think back I can see tiny snippets of stills-like symptoms throughout my life)- kind of like being hit in the head with sledge hammer, both literally and figuratively. Well, don't you think it's reasonable to assume that being hit in the head with a sledgehammer gives you big headaches? With a snap of your fingers, your life changes 360 degrees. What you do, how you feel, relationships, how you look, everything. Ofcourse we'll get headaches, who we thought we were is now totally changed. Of course, we get headaches. We worry about our future and the people in our lives -of course we'll get headaches.

How can the headaches not be related to Stills? That's insane to even say! Oh, well - enough preaching. I'm glad you felt comfortable with this doctor. I think any of us would love to find a doctor who made us feel 100% confident, but today I'll take anywhere over 75% - and ain't that a shame.

Well, glad you're feeling better about this rhuemy Kirk. And hopefully you'll start feeling better as well.

Carole

[Guest guest]

Yippy skippy for you Kirk. I am so very happy for you. I drive the same distance for my doctor but after 25 plus year feel is very worth it. smiles, Melt

[Guest guest]

Kirk,

I'm so happy for you that it seems that your headed in the right direction with your new doc. I related so much to your frustrations with doctors - glad it seems you have found a good one. Hope you are feeling better soon.

Peggy

Rheumy update (long and a little winding)

I finally got to see my "new" rheumatologist yesterday, and if the time he spent with me is any indication, he was worth the drive.

I knew there could be no "instant fixes", but at least now I believe I am headed in a better direction as far as treatment goes.

I have some leg work to do though, as it seems there is none of the lab results from my first hospitalization nor is there any "vitals" charts from any of the hospitalizations. He wishes to see them as he says the temperature "swings" or cycles are the key. I was hoping (and praying) that I don't have Stills, but he did say the rest of the labs do look like it. He asked me if my temperature was cyclic, but I can not honestly answer that, as all I can really remember about the first 2-3 days of my stays is PAIN, chills and high temps. I don't remember a lot. He also would like to see pics of any rash, but again, I only saw it a couple of times, and it was hardly noticeable. The one time I had it where it seemed obvious, I was in the ER, and the Dr there thought nothing of it. When I woke up, it was gone.

He had a ton of blood drawn and took a urine sample. He wants me to get down to 15 mg/day of Prednisone by my next visit in early November. He also gave me pamphlets on Gold shots and MTX. He seems to think the headaches are not related to the Stills...I guess we will see. He was able to give me the names of two neurologists he would recommend. That to me is good as even my PCP "yelled" at me to get out of "the area" with all of my problems. He seemed surprised when I told him that, but I guess he doesn't know NE Pa!!

I am satisfied with the amount of time I was in his office. With my last rheumy, 15-20 minutes was the norm...I was there just about 2 hours of which more than 1/2 was with the Dr. I thought my trip was wasted initially as they gave me the directions to the wrong office. I had the option of waiting until the afternoon to see him or drive to his other office. I chose to drive and still made it a few minutes before I was supposed to.

My ride home was nasty, as it rained to no end. What would normally be a 2 hour ride took me 3 1/2! I would rather drive in snow than rain like that, as visibility was nil for much of the ride.

I would really like to thank everyone who gave me suggestions and advice on my search for a rheumy. The one I saw yesterday (and hopefully for a while) is Dr. Kantor. He worked with Dr. Medsger from Pittsburgh. He told me he was taught not to refuse anyone who was seeking him out, that he would treat them unless he did not know what was wrong, and than he would send them to s Hopkins in Md. He seems honest and genuine.

Have a good one. I am hoping I can sleep tonight as I feel like hell.

Kirk.

Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

[Guest guest]

How can the headaches not be related to Stills? That's insane to even say!

That's a great big ditto from me, Carole!

Barbara

[Guest guest]

I am of the same frame of mind regarding the headaches being related. As I have stated in the past, I had 5 or 6 migraines in my life prior to this year, and they never lasted more than 10-12 hours.

If anyone can give me some medical information or research sights that can confirm this, please do so, I will take them to my rheumy.

I finally got the injections into my forehead and neck that are supposed to dull the nerves and reduce the severity of my headaches. It will be at least 2-3 weeks before I can expect any results. The way I am going, that may seem like 2-3 months! I know one sure fire sure...Mr. 44 Magnum! JUST KIDDING!

Have a good one, Kirk.

Re: Rheumy update (long and a little winding)

How can the headaches not be related to Stills? That's insane to even say!

That's a great big ditto from me, Carole!

BarbaraVisit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.