Regina, Like Jenna and Trudy, I am so sorry that you are going through a VERY difficult time.
I'm not sure where you live but I know that when the weather changes here in FL - which right now seems to be daily- my symptoms are much worse! The Highs and Lows really effect my TM. I will be seeing my Neuro in 2 days and I will have to report that I fell 4 times Friday. The first was the worse wrenching my knee and spraining my toe on my "bad" right leg - all because I tried to walk at the same time I was putting on my robe - no more multi-tasking! Due to the pain, my right leg kept giving out on me. I was really scared that I had broken my leg. I spent this weekend pushing and pulling myself in a rolling chair and mainly resting. I fell asleep at a drop of a hat. It's been months since I've had to use a chair to roll around in. The falling asleep isn't unusual - that comes and goes. Some days I'm so tired but can't sleep. Some nights I see the sun come up and still can't sleep. When you have your MRI make sure that they do it with and without contrast. My C4 through C6 leisons did not show on the non-contrast for some reason - only on the contrast. This appears to be the area that affected my hands, strength, and endurance along with the previous legs giving out. The Neuro at least had the guts, or balls, to tell me that he wasn't the one to see the C4 - C6 leisons - it was the X-ray TECH who pointed it out to him but this was only after the 5th MRI in 3 days. Although for the whole time in the hospital, I kept complaining of neck and shoulder pain. Which then put me back in the hospital only after being out for 3 days with a 22 day stay the first time. It took another 16 days 3 more MRIs and 7 PLEX treatments for me to regain use of hands, arms and legs. Are there other Neuro's in your area - Could you get a second opinion or even change to a different Neuro. Instead of sleeping pills plus the pain meds, I've found that Tylenol PM works better for me. I take 2 at night and within 30 min. to 1 hour, I'm usually fast asleep for 7 to 8 hours. On "normal" days, I also take 2 Extra-strength Tylenol every 4 to 5 hours instead of the pain meds. On "bad" days, I result to the pain meds in between the tylenol. Instead of the brand name, I take the Wal-Mart generic for tylenol for both the PM and Extra-strength due to the cost. These seem to work as good as or better than the brand name. I usually sit in my recliner with the heating pad on my back. But like you, the heater/air conditioner goes up and down. I can be sitting without the heating pad on, and start sweating from my shoulders up while the rest of me feels as if I'm in a freezer. To me, living with TM is a new experience every hour and every day. The way I feel today, I know will not be the way I will feel tomorrow or even the next hour - it may be better or worse. It's taken me a year to understand this and realize it BUT STILL at times I "forget" and really go down - mentally and physcially. So I have my hours or day of a Pity-pat Party - I know I deserve it. I also know now that depression played a big part at the beginning both mentally and physcially. Luckily, my GP tried 2 or 3 prescripts before putting me on Zoloft which has really helped. My Neuro wasn't interested in the crying and complaining and said I should talk to my GP. Ecept for the Zanaflex, my GP does the prescipts for pain, depression, and general health. I've also had problems where the Neuro didn't seem responsive but when I would talk to my GP within hours, I'd get a response from my Neuro or his office. Please don't give up. Keep trying with your GP and Neuro, change them until you can find one, or both, that understands. Ask your Neuro if he has contacted John Hopkins or any other facility that specializes in TM. John Hopkins has a number where physcians can contact them for specifics of your condition and TM. There are also pages for patients. My prayers are with you. God bless you. Candy K. ----- Original Message ----- From: Trudy To: Regina Rummel;tmic-list@eskimo.com Sent: 2/26/2007 1:26:08 PM Subject: RE: [TMIC] Venting! Regina, I wish I could find the words that would be able to help you thru this awful time in your life. But please do not give up! I have been having some of the same weird symptoms over the past few weeks. Weird taste in my mouth and awful headaches. I see my neuro tomorrow. But I so agree with you, they just dont listen!! They put you thru the drill: close your eyes, touch your nose,, etc. etc But when you try to tell them that your body is in pain and the fatigue is about to do you in, they just dont seem to understand. Stay in touch with us! and never, ever give up. Im glad to hear you are doing your therapy on your own. Its important to get up out of the chair every so often too and just walk around the house. You are in my prayers! Trudy From: Regina Rummel [mailto:[EMAIL PROTECTED] Sent: Monday, February 26, 2007 11:54 AM To: tmic-list@eskimo.com Subject: [TMIC] Venting! I am sooooooooooooo scared! I AM VENTING. THERE IS NO ONE ELSE I CAN SHARE THE FOLLOWING WITH: Just a few weeks ago, it became obvious that I am getting gradually worse every day. I felt vulnerable using the cane and started using the walker. Following are the latest symptoms: The throbbing, weird, feelings in my legs gradually moved up to my buttocks. Last night, and since then, they reached my crotch... The fatigue is worse than ever. Just reaching in the frig. for water, yogurt, fixing piece of toast or a little salad, cleaning up a few dishes is a challenge (more so every day). I have to sit down to brush my teeth. I can't get dressed without leaning against the bed or sitting down. Standing even holding on to something is difficult. I feel so lightheaded. I don't sleep well and hate starting on sleeping pills. Feb. 13, I lost my appetite and feel slightly nauseated a lot of the time. My scalp and ears are burning and itching more than ever. Sometimes, I think I'm even too tired to be depressed if that makes sense. The sypmtoms that some of you describe seem to come up overnight. With me, it's always gradually, but consistently. I must be honest and say that I don't trust the doctors. The last time I saw the neurologist, she said that we could try the IVIG treatments which didn't do a thing for me. But I sense when I talk to her (even though I think she cares) that there is nothing that can be done for T.M. Today, I'm afraid to get in the tub to wash up and wash my hair even though I do it sitting on a chair. Something is going on with my biological thermostat. I can be freezing and after a while, I'm so hot, I have to turn the heater off. I do the exercises from therapy on my own. They wear me out but I do them anyway because I don't want to atrophy. I saw the rhum. on the Feb. 12 shortly after all this started. She made me stand on tippy toes, and made me do something else holding on to a table, checked my arm strenght, took notes as she said that I was doing much better . She didn't seem curious about my walking in with a walker for the first time since I've seeing her for the past 10 years. It's as if what I was telling her didn't register. She thinks Neurontin has something to do with this and advised me to stop taking it and see the neurologist. I called her the next day to request that she orders an MRI which I have scheduled for tomorrow. The neur. appointment is on March 14. If it weren't for my daughter who lives next door, I think I'd soon have to hire someone to stay with me, or live in a nursing home. I hate waking up in the morning. I made arrangements for my funeral last week. My will is current I'm organizing all the papers and notes my daughter will need when I die. Soon I hope. I hate this life!
