Yes, it would be a good get-together. We would probably be shocked at all the different/similar symptoms we all have of TM. It seems to hit us all alike in some ways, and very differently in others. Janice
From: Dalton Garis Sent: Wednesday, November 30, 2011 5:31 AM To: PAMELA S ; [email protected] ; [email protected] Cc: [email protected] ; [email protected] ; TMC Group Subject: Re: [TMIC] quiet ot I do wish we could all meet together somehow; Now that we are good acquaintances, so that we could really appreciate each other's suffering and daily struggles, in order to give more than emailed verbal support. There are such strong personalities and survivor characters here. America needs our kind of character, I think, especially now. Perhaps we could think of some king of get-together/reunion for those who can travel, and make an online video meeting at that time for the rest of us. Dalton From: PAMELA S <[email protected]> Date: Tue, 29 Nov 2011 22:03:33 -0800 To: <[email protected]>, <[email protected]> Cc: <[email protected]>, <[email protected]>, TMC Group <[email protected]> Subject: RE: [TMIC] quiet ot Resent-From: <[email protected]> Resent-Date: Tue, 29 Nov 2011 22:06:17 -0800 spasming used to keep me awake. Not so much anymore. I have vertigo which manifests as nausea sometimes. Only am problem was related to BIH which was from high protein related to TM plugging up my arachnoid villa (sorry, don't care about spelling tonight) or my brain so to speak. ------------------------------------------------------------------------------ CC: [email protected]; [email protected]; [email protected] From: [email protected] Subject: Re: [TMIC] quiet ot Date: Tue, 29 Nov 2011 18:54:28 -0700 To: [email protected] Janice, Yes, I do. I'm actually supposed to take 10 mg of Baclofen every 6 hours. So, I try to keep it by my bed at night. Baclofen definitely can keep my spasms at bay, if I take it every 6 hours. Carpal tunnel on left hand keeps mebawake also, having surgery 1/12/12. On another fun note, one of my biggest problems in nausea, and vomiting if I don't get a Zofran pronto! ( always in the AM, like morning sickness) Anyone else have this? I have lost 17#... and struggle with a loss of appetite and cooking in general. I used to love to cook, and even cater. Susan, Phx, AZ On Nov 29, 2011, at 4:21 PM, Janice Nichols wrote: Susan, do you have break-through nights when the spasms keep you awake? Janice From: john snodgrass Sent: Tuesday, November 29, 2011 4:15 PM To: Janice Nichols ; Susan Kleinz Cc: [email protected] ; tmic Subject: Re: [TMIC] quiet ot i take 20 mg of baclofen at @ 5am,12pm, and 8 pm. at one point i was taking 100 mg per day. mfg. states that 80 should be the max dosage per day ---------------------------------------------------------------------------- From: Janice Nichols <[email protected]> To: Susan Kleinz <[email protected]> Cc: [email protected]; tmic <[email protected]> Sent: Tuesday, November 29, 2011 1:02 PM Subject: Re: [TMIC] quiet ot Susan, I am taking your advice and not just taking it at nite too. It is helping. Thanks Janice From: Susan Kleinz Sent: Monday, November 28, 2011 6:32 PM To: Janice Nichols Cc: [email protected] ; tmic Subject: Re: [TMIC] quiet ot Savella is a new drug designed to help people with fibro myalgia. It's purpose is to help neuropathic pain. It definitely works for me. For 20 years I took Baclofen at night only. I ended up taking way more than I do now, which is 10mg 3 - 4 times a day. My doctor, at BNI is a specialist in MS and TM. I am grateful for his care! Susan, Phx, AZ On Nov 28, 2011, at 4:20 PM, Janice Nichols wrote: Susan, I am on Baclofen, Neurontin, and Zoloft too. What do you take Savella for? Maybe I am missing out on something! You are right about the website. It has done wonders for me. Great for information and for handling the “isolated” feeling of TM. When I first joined, I had lots of questions that I asked everyone to respond to, and of course, they did. It kept things pretty active for a while, but things have slowed down again. It is a wonderful group - take a bow everyone of you!!! Janice From: Susan Kleinz Sent: Monday, November 28, 2011 10:33 AM To: [email protected] Cc: tmic Subject: Re: [TMIC] quiet ot I was busy with Thanksgiving... My two lesions are at T-7, so I do not have the brain thing going on. My first episode, I did have slurred speech...as there is a 3rd lesion in my brain that doesn't seem to be activated now. I would take any drug that would help me. Ritalin included. I'm on Baclofen, Neurontin, Zoloft and Savella. I should be smiling all day long! I am grateful to this website. I joined the TM Association and received a bunch of good literature. Also ordered The Official Patient's Source Book on TM. I am amazed that my neurologist didn't recommend these resources. Nor did I know how rare this illness is... My husband says I'm one in a million. Susan K., Phoenix, AZ On Nov 28, 2011, at 7:10 AM, [email protected] wrote: I hope everyone is ok. It has been very quiet on this site since before Thanksgiving or maybe I am kicked off again. Missing you. Jane/Splendora Tx
