Dave17522
09-01-2008, 09:28 PM
I am a 57 year old man with secondary progressive M S and after two years I have never felt so lost of forgotten. In 1995 I was diagnosed with a Genetic Heart Disease. After twelve years of getting that issue workable and retrained in a new career, I started having other symptoms that my cardiologist could not figure out. Almost giving up a pharmacist friend of mine got me an appointment with a stroke neurologist. After an extensive neurological exam the Dr felt that I had M S. Because of an implanted pacemaker I was unable to have a MRI, but a spinal tap confirmed his findings. After being put on a steriod treatment and then a treatment I have done well as one can be expected to . My problem is that ever since I have been told about my M S, I am not bitter but I feel that I have been left to drift upon the ocean with no help in site. I attended an M S support group for several months, but it was too far to travel to and the building though very modern was hard to access for me with a dropped foot. The group in my home town seems not to be able to get organized. I have great medicial and family support, but it seems that the only time they pay attention is when I am having an issue. I have learned a lot off of the internet, but is it t ime for me to orginize, or at least try to a group?
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Bearygood
09-01-2008, 10:44 PM
Hi, Dave, and welcome. I actually know someone in a similar situation to yours. She is SPMS and because she has a pacemaker cannot have an MRI. Interestingly enough, her doctor put her on Avonex about 9 months ago. There are some doctors who WILL prescribe a DMD for SPMS with the belief that since SPMS was once RRMS and therefore inflammatory, that it might be effective. The rub is that there is no way of telling if the drug has made any difference in her MRIs -- and as far as sx, I think she's been fairly stable since before she started the drug.
As far as emotional support, I have never been to a meeting but obviously, the internet is a great resource without having to go anywhere! :) I think it sounds like it might be a great idea for you to organize a meeting if you're up to it.
I just wanted to add one other thing and believe me, I am not one to push drugs (I am actually not on any). I have just seen so many good reports from SPMSers using LDN (Low Dose Naltrexone) and I wondered if you had ever looked into it. I don't think that I actually would go the DMD route like the woman i cited above did but if I had SPMS it's something that I personally would try.
As far as emotional support, I have never been to a meeting but obviously, the internet is a great resource without having to go anywhere! :) I think it sounds like it might be a great idea for you to organize a meeting if you're up to it.
I just wanted to add one other thing and believe me, I am not one to push drugs (I am actually not on any). I have just seen so many good reports from SPMSers using LDN (Low Dose Naltrexone) and I wondered if you had ever looked into it. I don't think that I actually would go the DMD route like the woman i cited above did but if I had SPMS it's something that I personally would try.
Dave17522
09-01-2008, 11:34 PM
Thanks for the reply..About the low dose naltrexone I have been on it for 6 months. I am treated at The Hershey Med. Center in Hershey Pa and my doctor was dead against it and then in about a half hour he called me and said he was putting me on it. It has done wonders for me that I do not get tired and have to take a nap as soon as I get up. The funny thing was that it was through the support group I learned about low dose naltrexone and then proceded to study on it before sugesting it to my doctor. That is why I am so infavor of support groups...
Dave17522
09-02-2008, 09:27 AM
I am taking a 4.5 mg dosage. At my next visit after I started my doctor confessed up that Hershey was going to start a study using naltrexone, but I would not qualify because they were only taking new M S patients starting an interferon beta 1-a or 1-b treatment. So, since i had been on Rebif for 2 years i did not qualify. I must confess that this is the first blog I have ever written on, but it seemed everyone (like the drug company) would call me every week or two to see how I was doing and nowI rarely ever hear from them.
I am not a dummy in that after reading and talking to my first neurologist that I had M S Symptoms for at least 10 years, but with all the focus on my heart noone ever gave a thought about them. What really gets me are the people that these drug companies "parade out" in there adds and magazines doing gardening and excerising and mountain climbing. That is a big difference from my life. I worked until November as a dispatacher for a major trucking company until I could barely climb up the steps into the building or handle the stress. Since then I have become my wife's house boy doing the washing,cooking and cleaning. I am not complaining, just would like SOMEONE other than the internet to sit down and tell me what is really going on with my disease. I have a very intentive Doctor but he just will not give me the answers I want! Even though I have kept a POSITIVE ATTITUDE and remain active (with what I have to work with) I just feel SOOO frustrated sometimes.
I am not a dummy in that after reading and talking to my first neurologist that I had M S Symptoms for at least 10 years, but with all the focus on my heart noone ever gave a thought about them. What really gets me are the people that these drug companies "parade out" in there adds and magazines doing gardening and excerising and mountain climbing. That is a big difference from my life. I worked until November as a dispatacher for a major trucking company until I could barely climb up the steps into the building or handle the stress. Since then I have become my wife's house boy doing the washing,cooking and cleaning. I am not complaining, just would like SOMEONE other than the internet to sit down and tell me what is really going on with my disease. I have a very intentive Doctor but he just will not give me the answers I want! Even though I have kept a POSITIVE ATTITUDE and remain active (with what I have to work with) I just feel SOOO frustrated sometimes.
MSNik
09-02-2008, 09:20 PM
Hi Dave. Im sorry I didnt see your post sooner, to welcome you, but welcome. I read your story and the posts in response, all very interesting and all very good advice..I know Ephrata, my stepchildren live in Olney and I live in Central Jersey. I had an experience like yours with my MS group as well, thats when i went searching for other support, and found this board 2 years ago- its my lifeline. I couldnt survive without the people here.
It sounds to me like you are looking for specific answers, but im not entirely sure what the questions are. I also think you have a valid point that having some disability, its tough to get in and out of some buildings- how dare they hold a meeting in a place which is hard to get to? Have you tried calling the local MS society to complain and find out if anything can be done? My group broke up, no one wanted to run it, being that I was a newbie at the time, i wasnt ready to try...ive been thinking alot about starting a new group, but am not entirely certain I can make the demands right now. Im also in my 40s and work parttime, having just given up my dream job with the big salary and cushy perks- due to my MS. Im in a dead marriage on top of it all, with absolutely no support at home..sometimes I wonder what the point is, until I realize that life is short, and I have to make something of it now, while I still can. With that, im thinking seriously of starting my PhD in January..and terrified!
Dave, one of the things that might help you is to try to reach out to others locally, You said that no one is organized and that nothing is really happening, make it happen. You seem to have some extra time right now, start looking for a way to include 4 or 5 people and get involved..it has to start somewhere. The MS society is always looking for volunteers, as well. You will get your questions answered here, if you ask specific ones...but if its more then the internet you need- unfortunately we have to advocate for ourselves.
Anyway, welcome to our site- it is incredibly supportive. And, i hope you find what you are looking for.
Nikki
It sounds to me like you are looking for specific answers, but im not entirely sure what the questions are. I also think you have a valid point that having some disability, its tough to get in and out of some buildings- how dare they hold a meeting in a place which is hard to get to? Have you tried calling the local MS society to complain and find out if anything can be done? My group broke up, no one wanted to run it, being that I was a newbie at the time, i wasnt ready to try...ive been thinking alot about starting a new group, but am not entirely certain I can make the demands right now. Im also in my 40s and work parttime, having just given up my dream job with the big salary and cushy perks- due to my MS. Im in a dead marriage on top of it all, with absolutely no support at home..sometimes I wonder what the point is, until I realize that life is short, and I have to make something of it now, while I still can. With that, im thinking seriously of starting my PhD in January..and terrified!
Dave, one of the things that might help you is to try to reach out to others locally, You said that no one is organized and that nothing is really happening, make it happen. You seem to have some extra time right now, start looking for a way to include 4 or 5 people and get involved..it has to start somewhere. The MS society is always looking for volunteers, as well. You will get your questions answered here, if you ask specific ones...but if its more then the internet you need- unfortunately we have to advocate for ourselves.
Anyway, welcome to our site- it is incredibly supportive. And, i hope you find what you are looking for.
Nikki
Dave17522
09-03-2008, 09:38 AM
Thanks for your comments about the support group. I have been thinking about calling the M S Society and seeing if we could get this support group started again, but I do not want to step on anyone's toes if you know what I mean? I talked to the young lady that has it and she says that her and a friend would go and no one show up. There are so many free ways to get your information out in our community, but honestly I would have never have known about the group if I had not seen it in the MS Society's Magazine. MSlifelines has a group that meets 40 miles from here but with the price of gas as it is that is too far. Like not giving in to my M S, I will not give up on the idea or getting a support group going. The thing about a support group one can learn so much from it. I would never have known about Naltrexone if I would have not been encouraged by a member of the group.