Turns out I have Multiple Sclerosis, not GBS or CIDP. Well, at least I have a diagnosis now.

[LiberalLoner]

It sure does explain a whole lot of symptoms I've been having over the years. Even now I can't hardly walk from the numbness in my legs and I have other weird symptoms too.

Neuro just called me with the results. Multiple lesions on the brain and some on the thoraxic area too (not sure I spelled that right.)

Guess I'd better learn some things about MS.

I have an appointment with my neuro at Bethesda on Thursday.

[Downwinder]

1. Maintenance therapy can stop the autoimmune attacks

and allow you to heal.


It is good to have a diagnosis. That helps remove some stress. Stress is as debilitating as heat.

Have been on interferon for 15 years. I can now marginally walk, talk, and see. None of which I could do at diagnosis

[Warpy]

2. Bad news: it's incurable. Good news: it's treatable

It's one of those diseases that waxes and wanes, so be really careful of quackery. Quacks love MS and all the autoimmune diseases, they keep them in mink.

There are new treatments all the time so there's a lot of hope out there. Treatments out there now increase the time between flareups and that increases the time between diagnosis and disability.

I've worked with RNs with MS. They were able to keep up with the rest of us between flareups.

In other words, don't go shopping for that wheel chair just yet. You might not ever need it.

[LiberalLoner]

3. Thanks u guys! It feels good to have a diagnosis finally because

When I was having bladder urgency and frequency, a male military doc who was a Mormon (he tried to proselytize me so that's how I knew) told me my symptoms were all in my head and entered that into the computer system (functional somatic syndrome) which has in some cases impeded my care.

I want to say a big Eff You to that doc. Yeah it was all in my head....and my spine too

So yeah I'm glad to have proof....

And whatever happens, happens. I have CKD too so I may not be able to take any nephrotoxic medicine but interferons should be okay.

I have been having bad spells for awhile now, they are getting closer together so...yeah I'm glad to just start the treatment. I also want a walker for a bit because I keep falling. Last week after the MRI, I fell into the car door and busted my lip open (ouch!)

Thanks you guys for all the support, I feel better!

[Warpy]

4. You might not need the full walker, it's a PIA to deal with

A quad cane will get you there and provides almost as much stability.

[Downwinder]

5. Went through that "It's all in your head bit" for twenty years.

They were right.

Got a copy of the MRI films just to prove something was wrong.

Most of the MS drugs are high dollar but they have prescription assistance programs.

[LiberalLoner]

10. I get "free" healthcare via the military, so no worries about cost.

But boy I'm pissed at the docs who told me it was all in my head. Still stewing about that.

[Downwinder]

11. Lost the feeling in one hand, couldn't find the hand

unless I was looking at it. Dr. said I must have writers cramp.

Interesting: The Atomic veterans Act says that if someone is diagnosed with MS within seven years of discharge it is considered service related. Must know something we don't.

[ProfessorGAC]

12. Well Said

I've had it for 19 years. I am pretty much the same now as i was at onset, which is to say not bad considering.

I still play 100 rounds of golf per year. Now i admit i can't walk the 5 miles carrying the bag. I can walk it, but would need someone carrying the clubs.

Warpy, your words of encouragement are quite righteous.

[deek]

6. Good luck to you

Getting a diagnosis is so important, even though it might not be the diagnosis you were hoping for...

[LiberalLoner]

9. Thank you!

[nana sew dear]

7. I am new here

I don't know what all the issues were but I know what MS is. Are you a vet? I hope you are getting all the help you need. Please keep posting about how you're doing.

[LiberalLoner]

8. Thank you so much! I am a vet, was in the first Gulf War

Nice to see you, welcome!

I think I might not get to see my neuro tomorrow as we are in the middle of a big snow storm. Everything is shut down today and probably will be tomorrow too.

[LiberalLoner]

13. Update: Saw neuros (team of 4) on Thursday and..

I have one extremely large lesion on my spinal cord, two small ones in my brain. Oligoclonal bands in my LP done during my last bad spell. Clinical signs support either NMO or MS.

So they are trying to figure out if it's NMO/Devic's syndrome or if it's just MS.

After reading up about NMO I'm hoping it's just MS but I have to admit my symptoms and history and MRI findings point more towards NMO. Oh, well.

[benld74]

14. I dignosed myself via the internet and the symptoms I was having back in '97

The doctor back then told me not to believe everything you read on the internet. I replied to him, "Oh so you're NOT a fine doctor as this hospital?" I'm on my 4th doctor now. He's kinda like SHeldon from Big Bang Theory