Re: Kiana- Prayers Answered, More Questions

[Guest guest]

Hi Kiana,

Well, what an anticlimax !!! I guess in a way you may be feeling

disappointed expecting to get a diagnosis and then not getting one. The

emotional aspect of all the waiting etc can't have been easy<caring hug>

RoaKiana I sort of felt I wanted to ask you to keep an open mind about the

possibility of you having a connective tissue disorder of some kind despite

what the tests show. These things are often more complicated than what meets

the eye and with your family history ......? Have you had a mycoplasm and

ASO titre test done?

Having said that the problem doesn't always show with them either, why does

it all have to be so complicated?! <sigh>

Sorry we're losing you, you've been a real asset to the group <warm hug> All

the very best in your search for the 'right' answer Kiana.

Take care,

special hugs,

lisbeth

rheumatic Prayers Answered, More Questions

>From: RK Rossi <bornfree@...>

>

>Well, what can I say? I am totally surprised with the results to my

>tests. I have NO rheumatological disorder whatsoever. Even my

>x-rays, which I thought for sure would show something, were negative.

>I do have signs of some degenerative disorder but obsolutely no

>inflammation anywhere in my body. Althought this confirms what I

>suspected already -- nerve pain as the primary problem -- it leaves

>many questions unanswered.

>

>And the biggest question... What the #*$% do I have!?

>

>Now my Rheumatologist is going to recommend that I see a Neurologist.

>I probably have to get a referral from my PCP. In addition my Rheum

>recommended a Dermatologist for all my various rashes and skin

>problems [i have lots of them]. I already set up an appointment last

>week. My Opthalmologist reported that I have conjunctivitis. It is

>on the upper eyelids.

>

>The most interesting comment out of my Rheum's mouth? I don't think

>you have Lyme Disease now but you COULD have had it previously. That

>is the first time I heard any doctor in WA State even sort of, kind of

>say, I might of, sort of had Lyme Disease. Well that is a start and

>an important one.

>

>So off I go for round number 4 for the state of WA. I have been to

>one doctor and two specialists and no one knows what I have. UGH!!!

>

>My dermatology appointment is in the first week of February.

>

>My Pain Control Management appointment went ... well... okay, it was

>different. I didn't know what to expect at all. I almost fainted

>twice. I got really queasy both times and had to have the doctor stop

>the treatment while I took a breather. IMS is definitely a different

>ball game all together. And right now my shoulders are aching bad but

>.. sometimes it is worse before it gets better. He asked if I ate

>lunch. I did but obviously I need to eat some kind of snack before

>the appointment. He said I had low blood sugar.

>

>I guess I will be leaving these lists because I obviously don't fit

>here either. I wonder if there is a list for the great unknown

disease/disorder?

>

>At least the Neurontin is working for the most part. And the Tap

>Dance is very helpful.

>

>Thanks for all the wonderful support and information. I have learned

>a lot and believe even more firmly that the root of my problem is Lyme Disease.

>

>--

>Kiana Rossi

>bornfree@...