Re: [TMIC] Grace's Progress

[Kim & Leo Reeves]

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 people get 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 should try 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! Sam Grace Chang wrote: Thanks for Mary Eden to remind me of giving the list an update on Grace’s progress. It has been a stressful period for us since the last time I reported Grace’s 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 person’s 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 Grace’s 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 factors (AFGF or BFGF?) for nerve regeneration for SCI. The researchers around the world are very excited about the initial results. My friend told me that one neurologist in Taiwan has treated about 200 cases with a very high successful rate. My understanding is that the formula is patented by Merck. Have any of you heard about this type! of study in U.S.? Personally, I got a stomach ulcer 2 weeks ago that requires an intake of acid reducer for 2 months. Otherwise, I am OK. Our only child, Kevin, has grown up a lot ever since his mother got sick. He helps to cook, clean house & wash dishes at home. I am very proud of him. He is also busy doing the weight lifting, speed training and practicing this summer for the upcoming basketball season in the school. Two weeks ago he took a short break and returned to Massachusetts to visit his old pals. Finally, he just got his learning permit for driving. I will write again when thing starts to settle down to a routine. Take care! CJ  Do you Yahoo!? Read only the mail you want - Yahoo! Mail SpamGuard.