Re: [TMIC] Grace's Progress
Hi CJ, There is a maillist very much like this one-in fact, started by a woman who initially had TM and progressed- and you might want to try there for info. Sharon's email is: [EMAIL PROTECTED] There are several injectable drugs used to slow the progress of MS. They are called the ABCR drugs. Avonex is given once weekly into the muscle (it's the one I use). Betaseron, copaxone, and rebif are the others, injected more frequently into the tissue just below the skin. You might ask your docs why they'd recommend one over the others. Hang in there! Sam Grace Chang wrote: Thanks for Mary Eden to remind me of giving the list an updateon Graces progress. It has been a stressful period for us since the last time I reported Graces condition to you all. In the past 4 weeks Grace has been admitted to a local hospital twice due to her lingering problems of vomiting low grade fever. Right now, she still remains in the hospital. Vomiting low grade fever: This has been a major challenge. Initially, her doctors thought that her UTI caused these symptoms. However, the antibiotic she took for 3 weeks did not help eliminate the symptoms. Her cortisone level was around 16 after she stopped the intake of Prednisone in early July. The GI exam did not show any sights of abnormality either. Her doctor re-ran her cortisone level a few days ago and this time the level dropped down to 3. Her doctor immediately put her back to the hospital to treat the probable Addison Disease and avoid the potentially fatal "Addison crisis. This time the doctor believed that her problems were caused by the adrenal insufficiency after receiving Prednisone for a long time. Apparently, her adrenal glands are not responding well even she took a slow taper from 40 mg down to 2.5 mg for 5 months of period before. Prednisone blocks the release of ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands in our body. If a persons pituitary gland is not stimulated to release ACTH due to either the damage from TM or blocking from the Prednisone withdrawal, the adrenals then fail to secrete sufficient levels of cortisol. In order to diagnose this insufficiency, a stimulation test has been done. Unfortunately, there is a nation-wide, shortage of a synthetic form of ACTH used for this test right now. For Graces case, she has to wait another 1-2 months before the drug becomes available. She is taking IV injections of hydrocortisone, saline and dextrose and is getting much better now. All the symptoms of gagging, vomiting, low grade fever and low blood pressure are gone after two days of treatment. To those of ! you who are suffering an unknown cause of low grade fever, I encourage you to check your cortisone level again even you had one recently. Has anyone had a similar experience before? Hope our experience helps! Cognition: Again, I have not noticed any significant improvement. Her memory remains very sluggish. Her neurologist did MRI scan at her brain, neck and spinal cord yesterday after she complained the numbness at her right face. Unfortunately, the scan result shows that there is a new lesion in her brain. Based on this finding, the radiologist and her neurologist think that Grace has MS now.. When I heard the diagnosis, I felt like being struck by the lighting twice. They suggest Betaseron treatment for her MS. This medication is given as an every-other-day subcutaneous injection. Its side effects include flu-like symptoms. I will get a second opinion before starting this treatment on Grace. Are any of you currently taking this medication? Motor skills: She is able to feed herself with both arms now. The daily writing practice and exercise of her right arm seems to help regain about 70% of her original motor skills. She can even move her left foot voluntarily. The sensation of her low extremities is gradually coming back. Unfortunately, it comes with a lot of leg spasm and stiffness. Grace was learning how to sit up before the recent episode stuck her. Bowel bladder movements: Also gaining some sensations back. She is able to push during the bowel program. UTI remains as a big issue for her. Emotion: Grace seems to become very sentimental. She cries over easily for any sad news or storylines while watching TV. Luckily she has not felt any depression from her illness. Sometimes I believe that her cognition loss helps to keep her from depression. Perhaps this is a blessing for Grace. My immediate concern is to get Grace recovered from the recent illness and to return to the physical condition that she can concentrate on learning the sit-up. I then need to confirm her MS diagnosis and lay out a treatment protocol with her doctor if her new lesion is truly MS-related. Grace will continue taking the acupuncture treatment. By the way, we had to stop giving her the final Cytoxan treatment due to her UTI. Recently, a friend of mine told me about a new clinical study of using growth
Re: [TMIC] Grace's Progress
About two years ago, when my diagnosis had been MS all these years, my family doctor prescribed the Avonex shot. It as well as the others are to slow the progression of MS. The reason for the Avonex for me, and most people, is because the thinking would be a once-a-week-shot would be preferable to every other day or every day, obviously. It, however, according to the Dr., is the one more peopleget headaches and flu-like symptoms from than the others. If the side-effects had been too bad to tolerate he would have tried the next one, and so on, if neccessary. But that would be the reason, I assume, for Grace's doctor picking the one he did -- he doesn't want to take a chance with her being more likely to have more debilitationg side effects, even though once a week would be more convenient. I would think that if she tolerates it well, he would eventually try the once-a-week, and if she doesn't tolerate it well, he would try the every day one, with less likely to have side effects. Obviously, knowing I have TM, not MS, had it all these years with no progression so will never progress, I am no longer doing the shot, and actually wasted a lot of money and time. For MS, though, everyone shouldtry it. The doctor himself actually had MS, retired a year ago because his MS progressed to the point where being a doctor was too much. The last time I spoke to him, he had tried 3 out of the 4 shots, and got such terrible headaches he couldn't function. Kim Reeves - Original Message - From: luthyen To: Grace Chang Cc: [EMAIL PROTECTED] Sent: Tuesday, August 03, 2004 12:28 PM Subject: Re: [TMIC] Grace's Progress Hi CJ,There is a maillist very much like this one-in fact, started by a woman who initially had TM and progressed- and you might want to try there for info. Sharon's email is: [EMAIL PROTECTED]There are several injectable drugs used to slow the progress of MS. They are called the ABCR drugs. Avonex is given once weekly into the muscle (it's the one I use). Betaseron, copaxone, and rebif are the others, injected more frequently into the tissue just below the skin. You might ask your docs why they'd recommend one over the others. Hang in there!SamGrace Chang wrote: Thanks for Mary Eden to remind me of giving the list an updateon Graces progress. It has been a stressful period for us since the last time I reported Graces condition to you all. In the past 4 weeks Grace has been admitted to a local hospital twice due to her lingering problems of vomiting low grade fever. Right now, she still remains in the hospital. Vomiting low grade fever: This has been a major challenge. Initially, her doctors thought that her UTI caused these symptoms. However, the antibiotic she took for 3 weeks did not help eliminate the symptoms. Her cortisone level was around 16 after she stopped the intake of Prednisone in early July. The GI exam did not show any sights of abnormality either. Her doctor re-ran her cortisone level a few days ago and this time the level dropped down to 3. Her doctor immediately put her back to the hospital to treat the probable Addison Disease and avoid the potentially fatal "Addison crisis. This time the doctor believed that her problems were caused by the adrenal insufficiency after receiving Prednisone for a long time. Apparently, her adrenal glands are not responding well even she took a slow taper from 40 mg down to 2.5 mg for 5 months of period before. Prednisone blocks the release of ACTH (adrenocorticotropin), a hormone that stimulates the adrenal glands in our body. If a persons pituitary gland is not stimulated to release ACTH due to either the damage from TM or blocking from the Prednisone withdrawal, the adrenals then fail to secrete sufficient levels of cortisol. In order to diagnose this insufficiency, a stimulation test has been done. Unfortunately, there is a nation-wide, shortage of a synthetic form of ACTH used for this test right now. For Graces case, she has to wait another 1-2 months before the drug becomes available. She is taking IV injections of hydrocortisone, saline and dextrose and is getting much better now. All the symptoms of gagging, vomiting, low grade fever and low blood pressure are gone after two days of treatment. To those of ! you who are suffering an unknown cause of low grade fever, I encourage you to check your cortisone level again even you had one recently. Has anyone had a similar experience before? Hope our experience helps! Cognition: Again, I have not noticed any significant improvement. Her memory remains very sluggish. Her neurologist did MRI scan at her brain, neck and spinal cord yesterday after she complained the numbness at her right face. Unfortunately, the
[TMIC] pain
My new neuro in the pain clinic is telling me that PAIN does not continue following the first episode of TM. I was diagnosed over a year ago and I have had pain from my waist down ever since. I have burning, aching, itching, and my skin hurts so bad that the breeze from the ceiling fan even hurts. She is trying to tell me that my pain is not TM. She wants to do a nerve block in my spine, I demyelinated at T9-T10. Please help me. Do any of you still have pain for this long, or maybe longer? Teresa Bain Ferrell
Re: [TMIC] pain
Teresa, You have Central Pain. Many of us with TM or MS have the pain you have. I have it from my shoulders down, LeftRight. You need to get another MD. The person telling you that the pain should have gone away is totally wrong!! Get a referral to a University/medical school/pain clinic!! Your condition weill not be helped by regional nerve block. You need meds- Tricyclic Antyidepressant like Nortriptyline, Antiepilepsy med and perhaps some other pain med. I use Marinol. Good Luck- don't let that MD touch you!! Frank
[TMIC] to Avonex or not to Avonex
Well, me missus is doing fine with Avonex, and her aftereffects from the shot are now down to almost nothing. She's been on Avonex since '99 March, and I've 'pricked' her 245 times and is as stable as she can be. She's still working an 8-hour day and is as active as she can be, till fatigue slows her down, but of course; after a brief rest, she's ready to roll some more. Indomitable Sure seems like it...:):):) Maybe Avonex isn't for everybody but for us it sure is. Bobberino,in sweltering Elvisland. canicular dayze are finally here.
Re: [TMIC] August birthdays
I can't believe there are three people on the list with Aug 11 birthdays, that is mine too. Happy Birthday to all. Erin TM 1/6/04
Re: [TMIC] Grace's Progress
WOW CJ SHE HAS REALLY BEEN THRU THE MILL WELL AT LEAST SHE HAS GREAT CAREGIVERS AND SHE SEEMS DETERMINED TO BEAT THIS.I AM SORRY ABOUT THE MS THING I WAS TOLD THE SAME THING BUT I DO NOT HAVE MS JUST TM. THE SIDE EFFECTS OR SO SIMILAR. THEY CAN TREAT MS BUT NO DRUGS FOR TM JUST MEDS TO HELP SYMPOMS. I HOPE SHE CONTINUES TO DO WELL. MY PRAYERS ARE WITH YOU PAM
Re: [TMIC] pain
My TM started in 5/76 and other than the painful spasms in the beginning I was virtually painfree until the past couple of years. Any pain that I did feel in the beginning, i.e., a stubbed toe felt 10 times worse than I remembered pre-TM. Now I have pain with the least little thing and doing the trial and error thing with the pain meds. Elavil didn't help, it only made me gain weight. Trileptal helped for neuroleptic pain which seems to have gone away so I have stopped the medication for now. I also tried the Fentanyl patch but thought it was bothering my stomach too much - I think I was wrong there. Now I have Morphine which definitely messes up my stomach and makes me constipated. Am considering going back on the patch or trying Methadone. I understand it works longer than the Morphine. Get a second opinion. My pain management specialist would only say go swimming, so I had to find another doctor who would help me until such time as I am able to try the swimming thing. Good luck! HildredTM since 5/76
