Re: Re: Misdiagnosis?

[Guest guest]

Hi everyone,

Hypermobile.......I like that description Marti. I have two fingers that can

move in all sorts of strange directions. They are like rubber fingers.

While I am on.... Does anyone ever have a sore Ribcage? If I am having a bad

day I find it difficult to breath right because of this. I thought it was just

moveable joints that would be affected.

Leanora, I started with similar problems to you. Left heel to start with.

Thought it was a running injury in the beginning. Then the other foot went. Now

it is all over. I am currently on MTX but it does not seem to be improving

things. I go to see a professor in a Glasgow hospital on Monday with a view to

going on to Enbrel. Apparently he is the foremost expert on PA in this country.

He works in tandem with my own Rheumy in researching this disease so at least I

seem to be in good hands. I would agree with the others in that it does sound

like PA that you have but if you want to be sure you should get someone else

to have a look at you.

Hope things improve for you in the future.

[Guest guest]

,

I also have days where my ribcage hurts. I'm sure that I have read others post

about this same issue, and others being told that since PA can effect the

connective tissue that that is why muscles and tendons can hurt. I have also

been diagnosed with Fibromyalgia and that effects my muscles, sometimes in

places that really surprise me. For example, yesterday I had a itch on my chest

and when I scratched it I noticed that all the muscles there were very tender to

the touch, like I had worked out lifting weights or something, which I assure

you didn't happen, LOL! When either of these things happens for me I try to do

some gentle stretching, try it, but don't over do it or it will make it worse.

I hope you feel better soon.

Axelrod

[Guest guest]

Hi ,

Thanks for the answer. Yeah when I say to my wife that I can't breathe right

because of my ribs she will say " Oh Good! " Seriously though, I think our sense

of humour is what gets us through this a lot of the time. I have had problems

where I feel as if I have strained muscles in my left side and my chest

believe it or not. When that happens it affects almost every other movement I

want

to make.

I went to see the professor I mentioned a couple of days back. He said " I was

going to ask you how you are but I can see the way you are taking off your

jacket that you are struggling " He wants to get me on to Enbrel but he said that

in certain areas funding is a problem(National Health)

He said that they are able to use these drugs quite freely for RA but not for

PA as it has not yet been approved for that. He said that some areas will let

them use it some won't. My area has let them use it in the past but recently

have been a bit more reluctant. What he is going to do in my case is contact

my Rhumy(Whom he works in conjuction with) and they will approach the local

Government in a " Pincer movement " to try and get me on to this. Looks like I

will

have to wait another three months either way. In the meantime he has added a

drug called Cyclosporin(Anyone ever heard of it?) to the MTX I am already

taking to see how I get on with that so, Here's hoping!

Hope you are well,

[Editor's Note: Cyclosporine is a well-known drug similar in effect to Imuran,

another immunosuppressive used to prevent organ rejection in transplants.

D.]

[Guest guest]

Hi ,

Thanks for the best wishes. That would be good. I've only had on period since

the onslought of P were I could say that I was more or less clear of it. That

was after my first stay in hospital and that did'nt last too long so I hope

this helps.

Thanks again,

[Guest guest]

,

Good luck with the cyclosporin. A few years ago I was on this exact

combination, MTX and cyclosporin and it worked GREAT for me! I had total

clearing of my P, even in my nails, and my PA was nearly gone, I only had to

take one darvacet (pain pill) per day. I mainly took the pain pill before bed

to help sleep and to lessen the stiffness in the morning. The only reason I

stop taking this combination is my husband and I wanted to start having children

so taking the MTX was not an option anymore. It took a couple of weeks of being

on both drugs before I saw any changes, but they did come. I pray that you have

the same luck I did with this treatment.

Axelrod