I’m sort of still here!

Hi, I miss everyone! Lots of doctors appointments for me, finally! Hopefully will have some time to update everyone. My mom has been irritable and a challenge. My new medication is helping but I’m tired 24/7. Dog isn’t doing well. But I miss everyone! And welcome to all the new Fibro warriors! Sorry, I haven’t read any threads in weeks but think about my Fibro family every day. Hugs to you! :hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs: :heart: Freedom


Freedom, great to hear you’re getting appointments now.
Not Mayo, but good docs all the same?
Is it the new med making you tired? Still on LDN tho?
Hope you’re not letting mom & doggie drag you down too much.
Also interested how your court fights for fibro & disability etc. are going on.
But don’t ever feel bad about not being able to write, everyone understands! :hugs:
(That’s why I hadn’t answered this till now, but didn’t want to leave you unanswered either.)

I saw a neurologist at the end of March. He started me on Klonopin 2mg three times a day which is the first line of treatment for Stiff Person’s Syndrome. The other name for it is Moersch- Woltman syndrome. He wanted to see if I would have improvement on the medication. Within 3 days, my pain went from an 8 to a 2 and the burning, sharp shooting pain and spasms are nearly gone. Tomorrow I have a lumbar puncture. Then I see my neurologist the following Tuesday. He will draw blood at that time. I won’t have the results of the tests for several days. But the antibodies for SPS would show up in both the CSF and blood. I had the blood test one year ago and it came up positive. The short name for the test is GAD 65 AB. I still have balance issues. I still walk funny. I can’t run. It’s wonderful not being in horrible pain 24/7. If I do to much, my pain is worse. I try to push through being tired and just do things tired. But it’s all about pacing. Right? I will fill in everyone about the continued fight regarding disability soon. I’m already exhausted and it only 9:45 am! Please keep me in your thoughts and prayers about tomorrow. Hugs to everyone! Old and new people! :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: Freedom


Wow, great your pains are down!
Praying for you for the spinal tap tomorrow :pray: :hugs:
I get what you mean doing things tired but so slow that it’s not overdoing it and the pain doesn’t get worse. That’s how I’m doing it today. Laptopping, but no meeting with the kids…
Hang on in there! :hugs:


Dear Freedom,
You are the bravest girl!!! Hope the spinal tap wasn’t too terrible.
I hear you about the tiredness. It is awful having to constantly take meds just to function. I did get an exercise bike recently, thinking the exercise would help. Well, I overdid it, and knees hurt terribly, so waited a few weeks, and now I’ve started back with NO resistance/tension on the bike -literally a level ONE, so, basically, I’m just turning the wheel (LOL), and wearing sleeves on my knees to protect, but at least it is something!!! Hubby is glad I’ve started back -he’s been urging me to do so. It is good to have people in our lives that push us a little, but, if only they could understand the extreme tiredness you speak about in your post. Isn’t it as if an elephant is sitting on us at times??? (Jay, do we have a meme of an elephant sitting on us? Perhaps you’ve already posted one.)
Later, gators! Freedom, You HANG IN THERE!!! :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart: :heart:

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