Re: [TMIC] TM or MS]
Marie, I guess this is something new to me. I was under the impression that with TM the brain had no lesions, just the spinal cord. But if you had lesions on the brain while at Johns Hopkins and they diagnosed you as TM, not MS, then someone can have lesions on the brain and NOT have MS (except NOW another Dr. says you HAVE MS!). I guess I'm confused about the brain lesions! Crystal wrote to me, and an MRI DID NOT show lesions on her brain but a Lumbar Puncture led to a diagnosis of Progressive MS. So, I guess one can have MS WITHOUT lesions, and according to your Johns Hopkins diagnosis, one can have brain lesions WITHOUT MS. ?? Gary in Michigan - Original Message - From: <[EMAIL PROTECTED]> To: Sent: Sunday, February 12, 2006 11:50 PM Subject: [Re: [TMIC] TM or MS] From: [EMAIL PROTECTED] Date: Sun Feb 12 22:34:43 CST 2006 To: Deborah Nord Capen <[EMAIL PROTECTED]> Subject: Re: Re: [TMIC] TM or MS Yes, the lesions were there and I have had no real changes in four years?? Dr. Pardo saw me four years ago and his diagnosis was TM. Thanks for your reply! Marie From: Deborah Nord Capen <[EMAIL PROTECTED]> Date: Sun Feb 12 22:30:11 CST 2006 To: [EMAIL PROTECTED] Subject: Re: [TMIC] TM or MS Dear Marie,Did you have these lesions on your brain four years ago when you went to Johns Hopkins?? Or are these new developments?? Johns Hopkins Transverse Myelopathy Center is the only center in the world that has the most knowledge and treats approximately 700 patients (more than any other doctor) with TM.? ?The brain lesions may be something that came on after your initial diagnosis.?Take care,Debbie? - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Sunday, February 12, 2006 8:12 PM Subject: [TMIC] TM or MS Feb. 7th was my 4th year anniversary of having TM... I have come a long way from that night from "hell" when no-one could figure out exactly what was wrong with me... Finally, it was decided TM was the diagnosis. Johns Hopkins agreed with this diagnosis.I take 600mg of neurontin 4 times a day... tho am never without pain.. I now walk with a walker, have hand controls on my car and with my faith and family have adjusted to my new life style. Due to Medicare I had to switch all my doctors. A Neurologist was highly recommened as one of the best in the area. Long story short...after all new MRI's etc... etc.. he informed me that without a doubt I have Multiple Sclerosis. I am still in shock and not sure what is my next step. I have made an appointment with another "top" neurologist in the D.C area..? I have 5 lesions on? my brain which supposedly indicate MS. I am 59 years old. Also my brother -55- was just diagnosed with underlying MS Any thoughts, suggestions would be greatly, greatly accepted... Anyone of you with TM have lesions on the brain Thanks so much! Marie Arthur
[TMIC] LYRICA
HI ALL, I AM RECENTLY BEEN PUT ON LYRICA FOR PAIN. I WAS WONDERING IF MOST OF YOU WERE ON LYRICA, OR HEARD ABOUT IT'S EFFECTIVE ON NEURO PAIN? I AM ALSO ON VICADIN 7/750 EVERY 4 HOURS. THANK YOU. DENNIS BEAUMONT, TX What are the most popular cars? Find out at Yahoo! Autos
Re: [TMIC] Chest Pain!Boa constrictor banding
Grace, I said that it was the bra God.paying me back for hating bras!! It now, after almost 10 years, doesn't come around often...only when I REALLY overdo!! janh Stillwater, OK
Re: [TMIC] Chest Pain!Boa constrictor banding
I agree with Jude, that's exactly what the chest banding feels like---a boa constrictor.. Luckily, the tegretol that I take for spasms/seizures also took most of the torso bandsing away. In the beginning, whnever the banding was at it's worst, it felt like I couldn't breathe. I hated that feeling. Grace
Re: [TMIC] dizziness
Me too on the fizziness since TM. If it's really bad, I take Gravol. I keep children's liquid Gravol on hand. Almost instant relief - works a lot faster than the adult pills or suppositories. There are times when I get dizzy standing up or moving too quickly - that I know is my BP plumetting. It's a different feeling. Diane in Canada [EMAIL PROTECTED] wrote: In a message dated 2/13/2006 2:45:42 PM Central Standard Time, [EMAIL PROTECTED] writes: I've had dizziness since TM. It never occurred to me to ask whether it was part of TM or not -- I just assumed it was since it came with TM onset, and, like most of my other symptoms, has gotten better but still flares up from time to time. I've had balance problems since TM onset, so I just connected the dizzniess to that -- but that's just guessing on my part. (Got a chuckle when I made a typo and put "fizziness" at first instead of dizziness. :-) ) Barbara H. I get "fizziness" on a regular basis. Glad you brought it up...Jude
Re: [TMIC] a rule about shouting
I am not worried any more by the "shouting", I've been around long enough to know when it's meant as shouting and when it's just meant to be easier. It just is really really easier to read when it's in larger, bold font. It makes no difference to the difficulty in typing if it's all in lower case. We have the most wonderful "family" in the world here and I'm sure we are all concerned in looking out for each other's interests. Gillywww.originaltouchofgilly.com - Original Message - From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Sent: Monday, February 13, 2006 12:51 PM Subject: Re: [TMIC] a rule about shouting I think for some people who have trouble with dexterity in their hands it is easier to type in all caps -- they don't mean it as "shouting." Barbara H.
Re: [TMIC] dizziness
In a message dated 2/13/2006 2:45:42 PM Central Standard Time, [EMAIL PROTECTED] writes: I've had dizziness since TM. It never occurred to me to ask whether it was part of TM or not -- I just assumed it was since it came with TM onset, and, like most of my other symptoms, has gotten better but still flares up from time to time. I've had balance problems since TM onset, so I just connected the dizzniess to that -- but that's just guessing on my part. (Got a chuckle when I made a typo and put "fizziness" at first instead of dizziness. :-) ) Barbara H. I get "fizziness" on a regular basis. Glad you brought it up... Jude
Re: [TMIC] dizziness
I've had dizziness since TM. It never occurred to me to ask whether it was part of TM or not -- I just assumed it was since it came with TM onset, and, like most of my other symptoms, has gotten better but still flares up from time to time. I've had balance problems since TM onset, so I just connected the dizzniess to that -- but that's just guessing on my part. (Got a chuckle when I made a typo and put "fizziness" at first instead of dizziness. :-) ) Barbara H.
Re: [TMIC] dizziness
In a message dated 2/13/2006 1:42:53 PM Central Standard Time, [EMAIL PROTECTED] writes: This is interesting! I NORMALLY have really LOW BP, but last time I went to the doctor it was way higher than normal, for me, though the nurse said not too high to be safe. Grace wrote and said maybe it was HIGH BP that was causing the dizziness. She said hers went up after getting TM. And now, you're saying that after TM yours is lower! (I'm getting the feeling that this is normal for TM - a myriad of quirky symptoms, and not all the same!) But you also said that it's usually after you eat, and this is what I experienced the other day! Hmmm! Maybe I need to check my BP more often. Thanks for the feedback. Sally PS FYI: Before TM, I found that drinking plenty water increased my BP so I didn't pass out so easy (usually at the sight of blood :) This might help you. Also, I made a note to myself to see if I'm not drinking enough water now. Hi Sally, I believe that low blood pressure goes hand in hand with TM as most of us have it, and also low temperature. If the dizziness got better after drinking lots of water, I am wondering if the water was softened or not. If so, it may have been the salt in the water that helped more than the water itself. Just my 2 cents, Jude
Re: [TMIC] dizziness
Oops! Sorry. It wasn't Grace, it was Lynn that said her BP went up after TM Sally
Re: [TMIC] dizziness
This is interesting! I NORMALLY have really LOW BP, but last time I went to the doctor it was way higher than normal, for me, though the nurse said not too high to be safe. Grace wrote and said maybe it was HIGH BP that was causing the dizziness. She said hers went up after getting TM. And now, you're saying that after TM yours is lower! (I'm getting the feeling that this is normal for TM - a myriad of quirky symptoms, and not all the same!) But you also said that it's usually after you eat, and this is what I experienced the other day! Hmmm! Maybe I need to check my BP more often. Thanks for the feedback. Sally PS FYI: Before TM, I found that drinking plenty water increased my BP so I didn't pass out so easy (usually at the sight of blood :) This might help you. Also, I made a note to myself to see if I'm not drinking enough water now.
Re: [TMIC] Chest Pain!
In a message dated 2/13/2006 7:49:36 AM Central Standard Time, [EMAIL PROTECTED] writes: Hi Everyone, Most of you know all about Cole, now 5 years old an incomplete Quad, got TM at 6 months of age. He has been having some chest pain lately, it is becoming more of a concern for me. It is always on his left , he kinda grabs his chest and says it hurts! I have taken his bp and it has been elevated a bit, also his heart rate is irregular. If I take him up to our hospital, it will be gone by then. I was wondering if anyone else has this problem, could it be from medication, could it be the banding everyone talks about. I guess I know what I need to do but I just hate getting him poked by more doctors that don't know anything about him. poor little guy it's so hard on him. Thanks for any info you may have. Wendy Hi Wendy, The banding feels like a boa constrictor is squeezing you to death. Ask Cole if that is the type of pain he feels. It would tend to go completely around his torso at that height. I have gotten "spells" where my heart does hurt. I don't know what causes it, but when I went for tests everything showed up normal. However, like you say...you know what you need to do. You can't just let it go because it could be serious. Praying for you, Jude
Re: [TMIC] dizziness
In a message dated 2/13/2006 1:07:45 AM Central Standard Time, [EMAIL PROTECTED] writes: Since the end of January, I seem to have been losing ground. I can still walk, though I use a cane more often. I probably actually have more strength, but my energy (when I have it) doesn't last long, and I often feel week and really dizzy, even when I'm sitting. Something doesn't feel right, but it's kind of vague. I don't have any real pain - just the soreness under my rib cage and the irritating tingling and burning in my legs/feet - I can handle that. Compared to many of your challenges, a little dizziness is nothing. But I'm concerned that I need to get back to work before too long, and I can't imagine working even 4 hours/day, the way I'm feeling. If I have an appointment, or have to get groceries, etc., it's about all I can do in one day! And I try to schedule things every other day, so I'm not totally wiped out. Is this typical, or just me? (The latter isn't new - just the dizziness is new.) When the weakness/dizziness hits me, I have to lay down to feel better, even though perhaps just 15 minutes before, I may have felt fairly normal. The only meds I take is OTC Senna S. In the hospital (9 mos ago) they started me with 6/day. I've managed to get down to 3/day, but am wondering if taking it for so long might be affecting me this way. Anyone have any experience with this feeling, or with Senna S, or have any suggestions? Thanks, Sally Sally, Have you been checked for inner ear problems? I don't believe that the dizziness has anything to do with a dx of TM. No one else has complained of it. \ You probably need the senna for your bowel program. Call the pharmacist and ask what the salt content is and if it has the capacity to lower your blood pressure. That can cause you to be dizzy and weak too. Best of everything, Jude
Re: [TMIC] TM or MS
Marie, When I was diagnosed with TM almost two years ago, the final test was a brain MRI (they had already done an MRI on my spinal area and found the lesion). So, at first they said it was TM, and THEN said I would have the brain MRI because I could have MS. The brain MRI showed no lesions, thus the TM diagnosis held. I haven't had any tests since and my condition is almost unchanged so I'm assuming I've not had anymore lesions. Perhaps at the initial diagnosis you did not have the brain lesions? I do'nt know.is MS actually MS without brain lesions? Sorry, I guess I'm not any help. If Johns Hopkins agreead with the initial TM diagnosis, perhaps you did at that time only have TM. MS maybe came later. I'll be watching to see what others think. Gary in Michigan - Original Message - From: <[EMAIL PROTECTED]> To: Sent: Sunday, February 12, 2006 11:12 PM Subject: [TMIC] TM or MS Feb. 7th was my 4th year anniversary of having TM... I have come a long way from that night from "hell" when no-one could figure out exactly what was wrong with me... Finally, it was decided TM was the diagnosis. Johns Hopkins agreed with this diagnosis.I take 600mg of neurontin 4 times a day... tho am never without pain.. I now walk with a walker, have hand controls on my car and with my faith and family have adjusted to my new life style. Due to Medicare I had to switch all my doctors. A Neurologist was highly recommened as one of the best in the area. Long story short...after all new MRI's etc... etc.. he informed me that without a doubt I have Multiple Sclerosis. I am still in shock and not sure what is my next step. I have made an appointment with another "top" neurologist in the D.C area.. I have 5 lesions on my brain which supposedly indicate MS. I am 59 years old. Also my brother -55- was just diagnosed with underlying MS Any thoughts, suggestions would be greatly, greatly accepted... Anyone of you with TM have lesions on the brain Thanks so much! Marie Arthur
Re: [TMIC] dizziness
In a message dated 2/13/2006 2:07:45 AM Eastern Standard Time, [EMAIL PROTECTED] writes: Since the end of January, I seem to have been losing ground. I can still walk, though I use a cane more often. I probably actually have more strength, but my energy (when I have it) doesn't last long, and I often feel week and really dizzy, even when I'm sitting. Something doesn't feel right, but it's kind of vague. I don't have any real pain - just the soreness under my rib cage and the irritating tingling and burning in my legs/feet - I can handle that. Compared to many of your challenges, a little dizziness is nothing. But I'm concerned that I need to get back to work before too long, and I can't imagine working even 4 hours/day, the way I'm feeling. If I have an appointment, or have to get groceries, etc., it's about all I can do in one day! And I try to schedule things every other day, so I'm not totally wiped out. Is this typical, or just me? (The latter isn't new - just the dizziness is new.) When the weakness/dizziness hits me, I have to lay down to feel better, even though perhaps just 15 minutes before, I may have felt fairly normal. The only meds I take is OTC Senna S. In the hospital (9 mos ago) they started me with 6/day. I've managed to get down to 3/day, but am wondering if taking it for so long might be affecting me this way. Anyone have any experience with this feeling, or with Senna S, or have any suggestions? Thanks, Sally Hi Sally, I first experienced dizziness in the rehab hospital about a week after I was hit with TM. The nurse saw that I was about to pass out and lowered the back of my wheelchair. My blood pressure had plummeted suddenly. I still have low blood pressure and have to take Proamatine three times a day. It usually goes down after I eat. Sometimes I get very weak and have to lie down and end up taking a nap. It really zaps my energy when this happens. Have someone to take your bp often to see if this might be your problem. Ironically, my bp was on the high side before TM. I hope this helps. Hugs, Priscilla in TN Happy valentine's day everyone!
[TMIC] Chest Pain!
Hi Everyone, Most of you know all about Cole, now 5 years old an incomplete Quad, got TM at 6 months of age. He has been having some chest pain lately, it is becoming more of a concern for me. It is always on his left , he kinda grabs his chest and says it hurts! I have taken his bp and it has been elevated a bit, also his heart rate is irregular. If I take him up to our hospital, it will be gone by then. I was wondering if anyone else has this problem, could it be from medication, could it be the banding everyone talks about. I guess I know what I need to do but I just hate getting him poked by more doctors that don't know anything about him. poor little guy it's so hard on him. Thanks for any info you may have. Wendy
