Who is the Best AP Doctor? Costs Involved.

[patchoulee]

You are lucky I called to try to see her in 2007 and was told she had a two year waiting list. HA I guess I should have went on it as it's two years now..lol

Angela

[Jeffiner]

 Hi Fergie , I am new to this site Lynn from On. sent me in this Direction . I live in  ST Stephen ..Born in Saint John ,Spent best times of my life at Red head . Moved to Above fredericton in 64 ….Then Lived in fredericton ,deepRiver On Pickering On . and Back to Fredericton ..Moved to St . Stephen in 79 . Need help in getting a Diag . Diag with Fibro I guess it was bak in (& (as Canada Pension called today trying to get something from them as I can't work ) I have had raynaurds for many years unrelenting pain in my hands for yesrs I guess that started back in 97 or before . Have pain everywhere all the time ….one dr. did diag sclero but and she told me I had a severe case ..but the blood work was normal . Now 3 years later I find my cholestrol ldl is 4.07 ..total chol. is 6.7 ..DR. says heart stroke level ..had a ct scan dec 2nd ..shows lung scarring ..they want a repet csan in 3 mos 9guess that would be two mos now 6mos in n.b. time ..ct scan also shows cyst on liver … these results came from the receptionist DR. to busy . I also was diag with pernicious anemia in 04. I have a sister with ms and brother with sacodosis . As a new Brunswicker can you give me any info of how to proceed . My DR. says I COULD NOT HAVE SCERLO  as he has only seen 3 in 30 years .???? Dr sardawski ? saint John rhumy has diag me with fibro a number of times …but when I went to her with the idea maybe it was more (severe dental issuessince 04) she diag, as not having sclero on my range of motion . I don't understand that . Hope you can help me because my rope is getting pretty short. Wendy

[Kim]

Hi Wendy and welcome to the Roadback forum.

Most doctors don't have a clue about Scleroderma because it is so rare they just don't see people with it.  Scleroderma can present in so many different ways which makes the diagnosis even harder.  It took me close to year to get my diagnosis, all the while I was going down fast.  Some people have skin involvement, others can be all internal, mine was muscle fibrosis with some tight skin.  After my rheumy refused to prescribe Minocin I asked my family doctor and he agreed.  You should read the Home section of the board under the Education and Physician Pages.  I printed those and presented them to my doctor and it allowed me to start on Minocin.  Later I traveled to one of our experienced AP docs.

Sounds like your doctors are not helping you and don't have much experience with SD.  Many SD people have normal labs which they should know about.  I'll send you the list of AP docs for Canada in a separate Private Message.

If you haven't already done so, you'll find it helpful to read the Henry Scammell book, Scleroderma, The Proven Therapy That Can Save Your Life.

Hope this helps.

Take care…….kim

[Fergie]

Hi Wendy,

I grew up in SJ as well.  I lived in Champlain Heights, just around the corner from RH!

Sounds like you need to see an AP doc.  There are many out there.  I went to see Dr. T in Boston.  He is good but a more traditional doc then some others out there.  He prescribed the Harvard Abx protocol which was helpful when I went back to see my own Rheumy.  She agree with his treatment plan.  AP has definitly been helpful for me and I have seen a lot of progress.  I found out that I also have Lyme Disease and have been seeing a Lyme Literate doc in New York who has been treating my LD.

To see Dr. T in Boston it cost me $422.80 US.  I thought it was pretty reasonable.

If you want to know more, please send me a PM and I can provide more details.

Best,

Jeff

 

 

[Author]

Posts