Wednesday, April 22, 2009

Minus One

I guess it's time to take my name off the MS registry.
( Sorry, Ms. Cheese, you'll have to recalculate.)


No! I haven't been cured. I still have all the pretty white spots on my MRI indicating lesions from demyelination. I still have balance problems, bouts of optic neuritis, muscle spasms, numbness, tingling, nerve pain, bladder dysfunction, extreme fatigue...ahh the list goes on and on....

Now add to that, dry throat (explaining why I choke on food), dry eyes, digestive problems, kidney problems and new joint pains to dance with my nerve pains.

My new diagnosis is Sjogren's Syndrome

WOOOT you say?

Actually I exclaimed quite alot of expletives when i was faced with that announcement.

I always thought that Sjogren's was a minor annoyance, dry eyes, dry mouth..big deal.... WRONG. In many cases the symptomology does not go farther than that, but like MS everyone is different. In some cases, Sjogren's can and does mimic Multiple Sclerosis when in invades the central nervous system.

I had to read the studies myself to be convinced...and honestly even now, I'm still shaking my head.

Here are some articles you may find interesting:

Neurologic manifestations in primary Sjögren syndrome: a study of 82 patients.



The prevalence of Sjögren syndrome in patients with primary progressive multiple sclerosis.


Myelopathy in seronegative Sjögren syndrome and/or primary progressive multiple sclerosis.




I was tested for SS years ago, before I had my MS diagnosis. The blood tests were negative. The explanation... Not enough antibodies swirling around at that time? I just don't know.
Some articles suggest that MS and SS can coexist with the Sjogrens being secondary. Other say it often mimics MS and is not diagnosed until the joint pains and sicca symptoms arise.


I found this web site very helpful and was told that the two women that founded it were first diagnosed and treated for Multiple Sclerosis before they found it to be Sjogren's Syndrome with CNS involvement. Sjogren's World


So, it walked like a duck, quacked like a duck, but it was a goose!

I guess it doesn't matter what you call it. Treatments are similar, with the exception of the DMD's, which might explain why I did not repond to any of them. The suggested treatment is methatrexate or cytoxins, and steroids, but as is often the case the potential risks of side effects need to be weighed against the benefits of use.

I have been attempting to adjust, both mentally and physically to this new development. I might be less dizzy if I could just stop shaking my head.

9 comments:

Have Myelin? said...

You...don't have MS? I should congratulate you! My mother has Sjogren's and RA along with Lupus. And...an *MS-like Syndrome* caused by going on Rituxan for her RA.

Sjogren's is a difficult disease. You have my empathy. Methatrexate will do some funnnnnnny things to your hair! I'm amazed at my mom's hair...she is no longer on it.

Keep us posted. I'm floored!

Miss Chris said...

Interesting! I'm not sure a congrats is in order though? Hopefully you will find a good way to treat your new diagnosis.

LISA EMRICH said...

Wait, but I like having you part of our group. It can't be true, it can't.

Well, actually, I really glad that you've gotten an accurate diagnosis. That's the most important part.

You may recall that I also have RA, and I use Methotrexate. It has been good for me but you gotta take Folic Acid daily!!! I use OTC supplements and take 3-4 each day.

I hope that you begin to feel better soon with treatment.

BRAINCHEESE said...

Hmmm...well, you may escape my extensive Multiple Sclerosis list, but you'll NEVER escape my OTHER list! Moohahahaha

(You know? The one where I list "good friends")

Now, can we all hear a big "WTF?!?" in your honor?

Merelyme said...

My dear sweet Bubbie! wow...really? I am...trying to digest this. So are you going to hang out with the Sjogren people now? Don't abandon us!

pUNKrOCKfairy said...

WTF is right! I'm totally shocked. I dunno how to handle this mixed news. Keep us posted.

Jen said...

My cousin was recently diagnosed with this. Had a really hard time with bad headaches and I'm not sure if they were ever diagnosed as part of this illness?....UGH.

Well, I still like you 'cause you will always be a NJ native, and your deadpan humor makes me laugh....

XOXO

Jen

Herrad said...

Hi,

Just came by to say hello.
Have a good Sunday.

Love,
Herrad

Denver Refashionista said...

Man sounds rough... Hopefully now that you know what's up they can help you. I guess the one bright spot is that you had already adjusted to the idea of a life-altering illness so hopefully there will be less adjustment here. Whatever it is, it is a bummer and we are still hear to listen.

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