New Diagnosis

[stillstANNding]

Bbs, I was thinking of the your possible 3 diseases that all involve the immune system. I wonder if it could be one over-arching immune problem. Maybe something that's not yet known.

ANN

[Sunshine]

You know, MS gets serious street cred. If it turns out to be SPS and not MS, rather than SPS AND MS, saying Stiff Person Syndrome sounds like something you feel after too much exercise. They need to rename it. Maybe I will just call it SPS.

[Sunshine]

Bbs, I was thinking of the your possible 3 diseases that all involve the immune system. I wonder if it could be one over-arching immune problem. Maybe something that's not yet known.

ANN

Yes. I wonder too. I have ab excellent Johns Hopkins trained immunologist. Am going to see him and ask him to look at the bloodwork and comment. I guess my asthma is another immune problem.

Am also gonna ask both docs if I should go to a referral center like Mayo. It would be hard though with my current pain and disability, but I would find a way.

[agate]

Seems it has another name--PERM, for progressive encephalomyelitis with rigidity and myoclonus but it's a bit of a mouthful unless you stick to the acronym, and if you go around saying you have PERM, people are apt to look at your hair.

[Earth Mother 2 Angels]

((((((BBS)))))) ~

It seems quite unfair that you have lived a clean, orgy-free life only to be saddled with 3 auto immune conditions. One in a million is pretty rare. How did you draw that card?

I'm thankful for you that you have top notch docs, particularly since it did take thinking out of the box to test for SPS.

I knew that I had heard of SPS before, but I recalled it as Stiff Man Syndrome. And that's interesting, since what I've read so far about SPS is that it occurs more frequently with women than men. Braintalk actually had an SPS forum, which didn't have a lot of traffic, likely because it is rare:

Only registered and activated users can see links., Click Here To Register...

In addition to the other therapies, you might inquire as to whether MMJ would be beneficial in treating SPS symptoms. Have you found relief with it?

You're in my thoughts and prayers, and I'm sending positive, healing energy your way ~

Love & Light,

Rose

[Sunshine]

I am applying for my MMJ card with the state registry. I have the paperwork, photos etc and mailing it tomorrow. Lots of hoops to jump through in Florida.

How ironic. Cigarettes and alcohol and OxyContin are all easy to get and legal and will kill you. But MMJ? Nope, we gotta regulate the heck out of it, and send people to industrial park areas to buy it, like common criminals.

[Sunshine]

Thanks earth angel. I went and read the archived threads. It's a good start for my learning. Am still in shock . Will try to get in to see the docs this week, or at least call a Monday about it

[Lazarus]

Yes. Plus I also have CVID, an immune disorder where body doesn't make antibodies correctly. IVIG treats that too. That illness is 1/50,000.
What the heck was my mom smoking during conception?!

I am a clean living person, normal weight, great nutrition, never smoked or drugs, don't drink alcohol, etc. maybe I need to take up smoking, get obese, drinking and wild orgies?

You might be on to something�� Where shall we begin?

[Sunshine]

I see my immunologist late today with DH. My neuro can get me in Wednesday. I figure they will do more labs, look at my lungs. My brain MRI is inabout four weeks. SPS does not get brain lesions that MS gets.

One step at a time.

[stillstANNding]

Good luck today, Bbs. I don't know what that would look like but quieting down the symptoms would be a start.

ANN

[Howie]

My very first MRI that confirmed the DX, lit up like a Christmas tree. I have those films because someone here said you could get them, but only for a while, so I called the hospital to get them, and they were really nice, mailed the films to me, and it cost me nothing.

The second MRI I had to get for the Hoveround, but I could only see them on a DVD they sent me, again, free of charge. And the Hoveround cost me nothing, Medicare paid for it.

Keep as much of your medical information as you can.

[jendie]

Did I miss the orgy?

[jendie]

Neuro was suspicious of Stiff Person Syndrome because of the intensity of the muscle spasms. He ran some esoteric blood work 2 weeks ago, which came back yesterday with many abnormalities. The most notable one reveals a definitive diagnosis of stiff person syndrome. It is an autoimmune disorder that attacks the brain and spinal cord. Very rare: one person in a million.

Dr. said that my abnormal brain MRI in Feb was consistent with MS lesions. He said it is quite possible I have both MS and SPS, that does occur. The July brain MRI changes will tell him if it is both MS and SPS, or just SPS.

BBS, I'm hoping you get the answers before too long.

[Howie]

Jendie, I'm sorry you missed the orgy, but Agate has another one planned soon.

[stillstANNding]

I am thinking that our orgies will be the chocolate kind. Yum.
ANN