[ARCHIVED THREAD] - MS - Multiple Sclerosis (Page 1 of 2)
Posted: 8/29/2007 6:24:51 AM EDT
|
My brother (Eric) was just diagnosed with MS and we need some help. The Interweb is full of crap and disimformation...it is hard to find the useful sources and seperate out the worthless stuff. We suffer no illusion about the scope and nature of the disease and we are not looking for miracles - we just want trustworthy information. Everything seems to be moving so slow for a disease that they say should be treated so quickly... If you have experience with this disease or if you are a doctor that treats this disease please post or IM information that could help us find clear answers. I am going to bump this a few times during the next few days to try and find folks that might be able to help. Please do not get upset and post insulting things if you see this post a couple times. If it bothers you, please just ignore this thread. Thank you. Joseph |
Thank you very much for the info! I will pass this along to my brother. I did send an IM. Again, thank you! JK |
Thank you! Our mother is driving his care at this time. I have been pushing to get them started on a therapy but it feels like they are meandering through this....UGGGHHH! Again, thank you for your kind words and your encouragement. Regards, Joseph |
Thank you for taking the time to respond. I am sorry to hear about your father's situation. I will add you to my prayers that God grants your family peace and strength. I had no idea what MS was until it happened to my brother. But...I guess that is the way of things. Again, thanks. JK |
That would be awesome. I will add your sister to my prayers, too! Thank you, Joseph |
She is extremely knowledgeable about such things. 
|
The Dr said it was too early to know which version, yet... The MRI showed 7-9 lesions but he just had the spinal tap Monday. Yes, my wife and I will research into oblivion the course and manner of treatment but there is so much junk info out there it is hard to quickly seperate the noise. There are several MS specific clinics here in Atlanta. We are trying to push him to try that specifically and see if they can offer more... Do you have any experiences with places like that? Again, thank you very much for responding! Regards, Joseph |
|
Diagnoses and treatment of todays MS patient is head and shoulders above what it was 40 years ago. Dad had it and fought it for 40+ years. In the late 50's and early 60's they didn't know what it was. The VA was clueless and really put Dad through some un-necessary stuff. The MS took dad's ability to walk and in the end some of his fine motor skills but never dampened his spirit. It finally shut down his respiratory system after a bought of pneumonia at 73. There has been some progress with vitamin therapies and with other things mentioned above can slow it down. It can do strange things. I know people who were wheelchair bound, regressed and were able to walk again and back in the chair after having a cold. Prayers sent for your family and doctors. |
I've heard the same thing. The wife of a good friend has MS. She hasn't done the Bee sting therapy. Prayers sent fpor your brother. |
|
I'm not too familiar with this. Is is a muscular degenerative disease? Is this genetic or something that you can get out of the blue? My sister's ex-boyfriend's mother had it for about 20 years before she needed a wheelchair for assistance during longer walking (shopping), but got around the house fairly well. |
|
My mom has it and has been diagnosed since the mid seventies. She has slowly degraded over time and is now bedriddon and basicly has use of her right arm. Her left side got it the worst first. The good thing is the drugs they are coming out with now seem to be doing good at slowing down the progression. The fact that she is still alive at 62 when both her parents died at 70 tells you something about how good they are getting with the medication for MS. I have all the hope that in the near future they will develop a drug to halt the progression it will not come in time to help my mom but people just being diagnosed now and those in the future should have a good shot at stopping its progression. And you never know what they are going to be able to do with gene therapy and stem cells. One more thing. I know you feel like they are taking their time comming up with what to do. Be patient, some of the drugs that are out there affect people in different ways. My mom has tried a few drugs that she has had to come off of because they were making her misseralbe. I will try and talk to my parents this week and get you the name of the drugs she is taking and who she see's since her Neorologist is in Atlanta. |
| My mother has had it for ~20 years. She gets tired, and uses a Tens machine for the pain, but otherwise she has a good quality of life... seems to have been in remission for at least the last 10 years. MS does not automatically lead to life in a wheelchair. Good luck to your brother. |
|
My aunt has MS and I've seen her deal with it for 30 years. I am no exeprt, but I know this: If your brother doesnt control the MS, it will control him. Help him win the battle by supporting him and do your best to help him live a normal life. He will slow down over time, but slow isnt bad. Stopping is. Good luck to you and family. |
|
Joe, I'm sorry to hear that. My grandmother battled MS her whole adult life. I hate to say it, but it really was a slow grind. She died of natural causes last month unrelated to MS, but her whole life she was debilitated. She was an immensly 'strong' person of faith and dignity (really weak physcially after MS) so she never let it show, but the doctors told us at every step in her life she was in worlds of pain. She never admitted it or let it show for our sake. She could get around allright until the later stages, but nontheless she was a cane user till she couldn't stand on her own, then walker dependent to move, then chairbound and finally bedridden... We obviously give money to MS charities, but I don't think there's a cure and don't know much about it other than my grandmother was relatively and then pretty much and then totally immobile my whole life. Sorry I didn't have good news. 
|
I will add her to my prayer list. Thank you for sharing your story. Regards, Joseph |
My brother is my best friend. I will never leave him alone and I will never NOT support him. Whatever the future holds is not relevant, I will be with him until I am dead. My wife and I are reasearching all that we can and we are doing all that we know to do... Thank you for your story and your support. JK |
|
Thank you everyone for your stories and you kind support. I will reread the posts and make a prayer list including everyone. Again, I will bump this a few more times over the next few days to see if other folks have info to share. Please don't get fruatrated. Also, thank you folks that IM'd. I have received some priceless information that means the world to my family. Thank you for taking time out of your day to post/respond/encourage. Regards, Joseph |
|
Joe in 1956 my Mother was diagnosed with MS and was given one year to live. She passed away in Nov of 2005 forty nine plus years later at 90. She was able to go to a clinic in Tacoma Washington for the summer (Iwas 6) and underwent a battery of tests which centered around the individuals allergenic issues. Also a major effort was put into vitamen therapy, B series etc. It seemed that the disease would surge forward at times, then lay dormant for a considerable period. I believe that today, the DR's will treat it constantly. We have several friends which have within the last few years also been diagnosed with MS, and there is much to learn still. Yes aggressive early treatment is advised, as to slow the progress of any disease is a valid concept. I understand now that they consider there to be several types of MS, and I would check with the DR's about which web based sites to trust, and which not to. The web is not always your medical friend. An observation of mine has been that the further up the body the disease is showing itself, the bigger the problem. Because it is neurological in nature, MS is very difficult for them to fully comprehend. God speed to Eric. |
|
when I met my step mother in 1987 she was just diagnosed with MS, you could hardly tell. She died from MS this year. The last six years she was in a care facility and was bed ridden. I do not know all the details, but my dad had to learn how to administer the medication (IVs and catheter stuff). My step mother lost vision pretty quickly and went through many sets of glasses. She did the chemotherapy and lost all her hair. When I moved to TX in 2001 she was just admitted to the care facility. When he started getting worn down from working all day and working all night they both decided that it was time to get admitted to a full time care facility. Good luck and I hope they find a cure for MS before your brother gets too far gone. |
|
My cousin had what I can only describe as the worst kind of MS. It was accompanied by seizures that were so severe it was like she had a stroke ever time she had one. My aunt and uncle had to work with her to re-teach her how to do every basic thing again and again and sometimes there wasn't enough time in between seizures to re-teach her and they had to take care of her. She was 20 when she was diagnosed and 21.5 when an 8 hour seizure took her. The doctor's said her brain scan looked like star wars it was so bad. If there are other symptoms of the MS you can find support groups for that as well as the MS. My aunt and uncle joined a brain injury support group and found it more helpful than the MS support group. Take this time to spend with your brother that way no matter what happens you'll have that time to remember. You and your family are in my thoughts and prayers. |
That really sucks, as other have said be careful of the infomation, my ex-girlfriend who was also a reporter has it. When she got information as a patient it was completely different then when she said she called as a reporter. |