Thanks for your kind words, Mark. And everybody else, too. Here's the semi final verdict from a rare disease specialist: Gougerot Syndrome.

Like everybody else I know, I never heard of it until a few days ago. It's on the Internet; I couldn't make such a thing up even if I tried. At bottom, too many antibodies which, for some unknown reason, turn around and attack healthy tissue. Were they formed to fight a disease? Are they hereditary? Nobody knows.

I say semi final verdict because the doctor wants me to be hospitalized for a few days and undergo more tests, among them a spinal tap. Sorry, I've had enough. Especially since there is apparently no cure for Gougerot Syndrome. I'm still on Lyrica, 100 mg per day, which is killing the pain; what else it is killing will show up later. The pain is by far not 100% gone; I am weak and tight; I can barely tie my shoes.

That's it for the moment. Hope my words will help someone out there. My horizon has been greatly broadened by all this, for whatever that's worth.

Tom

Tom
 

I wonder if it's in the same family as MS??

Dear Dear Friend Tom
 

Receiving words from the doc of such pronouncement cannot be easy, easy at all. I, too, learned very recently that my nerve degeneration in the lower half of my body according to the estimation of my doctor will progress. I at one time was on 1800 mg Lyrica per day [and then far more and loopy meds prior to my SCS surgery]. I understand whereof you speak regarding the difficulty of taking meds, and yet, their apparent helpfulness, if at all.

You have my deep empathy regarding receipt of words which, in themselves can seem debilitating, and yet, you know, for now...... for now, I have this blessing of this stim unit which has allowed me life for now without any pain medication whatsoever..... fully withdrawn. SO despite what my doc said recently, I say- pedal to the metal, and I am going to go for what I can have in life while endeavoring to be a blessing to others. That is my take. Gee, if I had zillions of dollars I would suggest you and I do a bucket list approach to life and make like eagles..... but God did not see a need for zillions of dollars in my life, so, instead I will share and share with you my thoughts of good things and my prayers.

I feel blessed,
Praying for the best for you, Tom,
Mark56:hug:

Oh Tom, this is not what I've been praying for. :( I am very grateful to read that your pain in "controled" by the Lyrica in spite of what ever else it's doing to your body. I did google your Gougerot Syndrome and not sure I understood what I read about it, like you, I'd never heard of it.
Please stay in touch with us when you feel like it....we care about you.
Love, Alffe :hug: :hug:

Dear Tom,
Is it an Autoimmune disease? I don't know that name either but I do know of Sjögren's syndrome and in PubMed, the two words come up together a lot. (Gougerot and Sjögren's). I wonder if it's the same or a combination of symptoms? A dear friend from the TS forums and chats from years ago had Sjögren's syndrome. I haven't heard from her in years but lots of what I've just read in your posts sounds familiar.

take care there,
Lara

Reaching Out Tom!
 

My inbox has not shown a post from you lately Tom, and I am taking a moment to write in hope that you are faring well. The DX is surely a lot to swallow, even so, you are such a person of great character, that your words gone silent has impacted the lot of us I am sure as we embrace you in the love God has shown us.:grouphug:

Of late, I have been reading the Metaxas biography of Dietrich Bonhoeffer. Such a life of reaching out to deny the regime its ownership of the church and God in Nazi Germany, quite a testament to the way in which one who is driven in some ways like you, probing continuously your mission in this life despite debillitating pain and the sapping of your strength. You bring so very much to us in asking the questions you have posed, contemplating purpose, deriving joy from those who have posted in reply...... you bless us all.

Well, my friend, I just wanted to reach out, touch your heartstrings once more, give you my hope for a better tomorrow, and prayers for a good night's rest,
Prayin,
Mark56:grouphug:

Tom, I'm so sorry I missed your post! I do wish you might reconsider the hospitalization for tests.

I looked all over the internet as well, and Gougert Syndrome keeps coming up with links that have Gougert associated with a few other names. I wonder if Lara is correct about the Sjogrens because I noticed on The Sjogren's Syndrome Foundation web site that the name Gougert does show up.

Apparently there are treatments but depend on the individual. I honestly think more testing (since you're already closed in on a 'semi-final' verdict) couldn't hurt and might help. Well...yes, spinal taps aren't any fun. :o

I'm just very grateful that you keep us updated. We worry you know. :o :hug:

Thinking of you today ((Tom)).

choice
 

Yes, many people read this site. I understand that for many just talking about the word suiside is bad. However I believe talking about it is better than letting it fester just below the surface. I am doing just fine in life right now, but I have been to the darker side of the issue. When my health declines to the point that having life in an unforgiveable state of cronic illiness, you can bet I won't be the one hanging on with multipal tubes keeping me alive. I have choice. This isn't about depression, or causes that can be helped, this is about irriversable illness which leaves you in a non-human condition in which life becomes a real hell. I have seen it at the hospital. I am not pleased with what I see. I will know what to do. This is education to me. I intend to live a good long long life if I can. Being prepared for the worst that can happen isn't a bad thing. It is like preparing for a hurricane you know is coming right at you. I hope the moderators of this site will not be upset with me for my opinion, I don't want to rock any boats or anything. I just know for myself only, that joining a compassion minded group was right for me. There is a whole movement in the US to at least touch on the forbidden subject with an open mind. I wish for us all to have good long lives. ginnie

Ginnie
 

Are you familiar with the organization called COMPASSION & CHOICES? I think you would really be interested in their mission statement. I think you can Google them.