[KarolH]

Well I will start by saying I am still in Limbo land.

As I have said before I was dx with Multiple Sclerosis in 2005 yet I have never accepted the dx and have always felt that the doctors were missing something big.

Well, I went to my Neurologist today for a follow up appointment for the MS. This Neuro doctor is great and for the last 6+ months he has worked with me re testing me and putting me through the gammett of testing for MS. Again, just as I expected nothing really points clearly to MS.

Here is where it gets interesting....................I gave him a copy of my most recent bloodwork that the Rheumatologist did and he looked it over very carefully.

He is now convinced that I do NOT HAVE MULTIPLE SCLEROSIS but instead either a Lupus or Mixed Connective Tissue disease along with a clearly positive Lyme disease diagnosis.

He recommended I see a Infectious disease doctor for the Lyme and he gave me a few names of guys he trusts. For Lupus/MCTD he said go see this Rheumatologist and he gave me the name of a guy he also trusts.

I told him about the Rheumy doctor I have been seeing and how he put me on Doxycycline for the Lyme. It made me so sick and I had such debilitating pain radiating through out my body that I had to stop taking it. I did call the Rheumy doctor on June 9th to let them know I was stopping the antibiotics, told them why and they said they would have the doctor call me back by the end of the day. Well, here we are 2 weeks later..............no phone call! I could not even walk I was so crippled and NO PHONE CALL???

Needless to say this left me wanting to find another Rheumy to treat with so I will probably set up a appt. with the doctor my Neuro referred me to.

I am going to France July 14th for 10 days so I do not want to start treatment for anything until I return home.

I am so darn happy that I was finally told, "You do not have MS"......yet I am still in limbo land and now it is either Lupus or MCTD????

So, does anyone know anything....IN LAYMAN'S TERMS PLEASE about MCTD?

I want to thank all of you here for being so supportive while I continue to hang out in the NOT DIAGNOSED YET section of this lovely place.:lol::lol::lol:

Your all a great group of people!!!:wink2::wink2::wink2:

 

[cad]

Hi Karol,
I am sorry that you had such a rough time with your rheumy and that your lymes is not fully under control as yet.

I have recently had tests which indicate MCTD but am just waiting to go back for the diagnosis.
I have inserted a link which i think is useful and does not contain loads of jargon and jibberish.
MCTD was discovered in 1972 and classified as an overlap of SLE, Scleorderma and polymyositis.

,http://www.medicinenet.com/mixed_connective_tissue_disease/page2.htm

This link is really informative, just pleased don't get scared!
This diagnosis is certainly not as bad as a diagnosis of MS and the prognosis is better for MCTD patients than lupus in terms of interal organ involvement.
MCTD sufferers are more like to suffer from more sever arthritis symtoms.

I hope this really helps.
I will keep my eye n this thread if you want to chat.
I usually check a few times per day.

Good Luck.

Cassie

 

[Katharine]

Hello Karol,

That sounds like a really useful appointment and it sounds like you are finally getting somewhere

I hope you find that the rheumy he has referred you to is good. The link I have here explains the difference bewteen MCTD and UTCD which are quite often confusing for the patient (and some docs :lol.

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

Katharine

 

[KarolH]

Cad and Katherine,

Thanks so much for the links. I will go check them out now.:wink2::wink2::wink2:

 

[LolaLola]

Dear Karol, Well it may feel like Limbo but really you have come a lot further forward. We are delighted you still hang out with us.
x Lola

 

[KarolH]

Dear Karol, Well it may feel like Limbo but really you have come a lot further forward. We are delighted you still hang out with us.
x Lola

Thanks Lola...............your a sweetie.

I guess your right in that I am moving forward but I wish I would just reach my destination.