Re: Dave Bass needs our support

[Guest guest]

I have a close girlfriend who has her Master's in Nursing. She lives in Gainesville. I'll ask her who to see, who is good.

Barbara

[Guest guest]

Barabra and my Stilliagans,

It's Dave. I thankyou for calling your friend I greatly appreciate it. I hope you are in less pain. This goes to all my Fellow STILLSIGANS. You Guy's are my FAMILY. I want to personally thank all those that e-mailed me and all your kind and sincere thoughts to me at this very deteriorating and sick time of my unfortionate Life right now. All I want is to have a normal 22 early 20 life and drive again have a girlfriend and live life to it's fullest.stop going to Dr's appts, tests, surgeries, etc, But I know not right now it's not going to happen. Hopefully same day. Please, don't get me wrong I don't mean to complain and sound sef-fish because I'm really not. I know theirs so, so, so, many really much sicker people out their and of course we the Stills Group so please don't misunderstand that. I truly hope and pray that all of my old and new STILLS FAMILY are in less pain and feeling somewhat "Descent" Even though I don't know all the new members I really welcome you again and hope your on a good and well path with your physicians. I have some more bad news about me If I needed more on my plate. I just got off the phone with my Neurologist about 1 hr ago and he said I have Auto-Immune Neuro Muscular Disease additional with the Stills and all my other Connective Tissue Disease He said it's all Auto-Immune Even though my ANA Is NEGATIVE. My CPK'S are extremely high The normal range for a person is 30-105 mine is 750! I'm going for another MRI this time it's not open !!!!CLOSED MRI of my Spine due to the Neuro mus. Dis. The reason why I'm constantly falling down and having these excruciating painful muscle spasms are now due to my CPK Enzymes and My new Neuro-Dis. I was using a regular cane he's now switching me to a different cane called Quad Cane. I'm still waiting to see if I can go to Shands Hospital at Univ.of Florida. If not theirs a doctor at Tufts-New England Medical Center in Boston, Massachusetts where I'm origionally from I've been down here in south florida for 14 yrs. Anyway she saw me when I was a little baby and child there I'm now 22. My Parents and I spoke with her and she deffinetly said I have a Auto-Immune Rheumatological Connective Tissue Disease. The problem is she wants me their for 3-4 months and she would give me a complete extensize exam and told my mom she would put me on a few DMARD'S And hopefully with in a few yrs maybe remission she doesn't know yet about my new Neuro Problem. The second problem is my parents can't afford flying back and forth and staying for 3-4 months. So right now I'm in No where situation. I changed to a different PCP and maybe he could help in some way. I need a Rheumy and Meds. before My crap head jerk off rheumy I can say other words but I'm not. Said he was going to put me on Inj. Form of Methotrexate and Remicaide.I then a recieved a certified letter in the mail saying "" Your disease is to complex for me you need a tertiary teaching hospital" My Former PCP told both my parents and I that If I don't have a new Rheumy by last July which was 3 months ago she would drop me to. So I changed as I noted that above. Right now Until My new Appt with the new Primary next week my Neurologist who is a brilliant and fabulous guy said if I need anything until I see the new PCP he would treat me. My fevers are going up every day I had 102.7 this morning. Well, enough with me I'm very very sorry for going on and on but this is the latest. While I was typing My Neuro just called and told me to increase the pred to 60 mgs daily that maybe would maybe help with the Myelopathy and neuro and everything else. until I see the new PCP or shands whenever???? I really appologize to all of you for going on and on. I never meant to do that. My thoughts and prayers goes out to everyone and I hope all of you are having a pain free day and not that Sick right now. I'm constantly thinking of all of you. Melt, You are a very special friend to me and your a beautiful person both inside and out. and it'll never change. Tricia, Sweetheart Friend your always there when I need you. Your the best. Louise, Caroline, you guy's are sincere and are great people. Everybody else you know where you stand in my heart. I WILL NEVER LEAVE THIS GROUP AS LONG AS I LIVE!!! YOU ARE MY FAMILY. Sincerly your Fellow Stilligan

---------Dave

[Guest guest]

Barabra and my Stilliagans,It's Dave.

Dear Dave,

Your courage at such a young age is inspirational - I whine and complain all the time, was just thinking about another one of my whine-feasts for the Stilligans and realized that I don't need to. You already sound like a fine young man - I guarantee that with your attitude, strength and love, you will be able to have a lot of those things you talked about in your post, a day without worrying about doctors and have a girlfriend and all that. Thank you for your post Dave, you have no idea how important it was for me to read it tonight.

Love Carole

[Guest guest]

Please Read the following:

[Guest guest]

Dave, Im sorry for all you are going through. Was your rheumy Dr. watson? Barry I think. Also I've learned that if you have elevated CPK levels that your pain is severely increased. Were you on enbrel at one time? If so have they said anything about a connection between the enbrel and neuro symptoms. They are finding more and more cases of neuro problems with the anti tnf drugs including humira.