Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Dale, We've all been there and we can relate to how you and your wife feel. I was diognosed with PLS in June 2000. I am now confined to a wheelchair and have speech problems. I started with left foot drag and balance problems. We thought right up until I was diognosed that what I had could be fixed and treated. Well, it cannot! So, we sold our beautiful old home where we had lived for 32 yrs. Left a community that my husband grew up in. Left our chuch that my husbands family founded. It was difficult but we knew we had to plan for our future. We built a new home right next door to my sister. We never looked back. Our lives have certainly changed. Our hobby was dancing. Now, we do other things that we enjoy. Life still has it's rewards. This group has become a big part of my life. They are just an awesome bunch of people!! I need them and I think you will also. You will be in my prayers!! LOVE, PAT in North Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 -Dale, this is a great group and the best one to have if you have Pls. I was diagnosed 4 years ago after 15 years of going from Dr. to Dr. You must understand PLS is life style threatning not life threatning. I have had it for atleast 19 years and it is only in my legs which I am very thankful. Everyone is different in their progression. We are a wealth of information so ask away as someone will have the answer. Welcome to our group. Carolyn from Washington State.In PLS-FRIENDS , " pcroom2003 " <pcroom@d...> wrote: > Dale, We've all been there and we can relate to how you and your wife > feel. I was diognosed with PLS in June 2000. I am now confined to a > wheelchair and have speech problems. I started with left foot drag > and balance problems. We thought right up until I was diognosed that > what I had could be fixed and treated. Well, it cannot! So, we sold > our beautiful old home where we had lived for 32 yrs. Left a > community that my husband grew up in. Left our chuch that my husbands > family founded. It was difficult but we knew we had to plan for our > future. We built a new home right next door to my sister. We never > looked back. Our lives have certainly changed. Our hobby was dancing. > Now, we do other things that we enjoy. Life still has it's rewards. > This group has become a big part of my life. They are just an > awesome bunch of people!! I need them and I think you will also. You > will be in my prayers!! LOVE, PAT in North Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Daryl~ I am also on the MSN group also. And I do understand what you mean. I never have really felt the closeness there either. That's one of the reasons you only see me post there, maybe once or twice a year. But, you do seem familiar to me. Did you have a father who passed not to long ago? I'm sorry, I may be confusing you with someone else. If not, then I am sorry for your loss. In any case, I'm glad to have you with us. It is getting very late right now, so sometime this weekend, I'll introduce myself and give you a little bio about myself. I hope you find what you are looking for here. Love and blessings...Val Support I have secondary/progressiveMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.7/992 - Release Date: 9/6/07 8:36 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Daryl~ I am also on the MSN group also. And I do understand what you mean. I never have really felt the closeness there either. That's one of the reasons you only see me post there, maybe once or twice a year. But, you do seem familiar to me. Did you have a father who passed not to long ago? I'm sorry, I may be confusing you with someone else. If not, then I am sorry for your loss. In any case, I'm glad to have you with us. It is getting very late right now, so sometime this weekend, I'll introduce myself and give you a little bio about myself. I hope you find what you are looking for here. Love and blessings...Val Support I have secondary/progressiveMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.7/992 - Release Date: 9/6/07 8:36 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Daryl, welcome! It's a shame you didn't feel welcomed in your other group. You have come to the right place. We are family here. Looking forward to getting to know you. ~*Trista*~ CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! Support I have secondary/progressiveMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.7/992 - Release Date: 9/6/2007 8:36 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Daryl, welcome! It's a shame you didn't feel welcomed in your other group. You have come to the right place. We are family here. Looking forward to getting to know you. ~*Trista*~ CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! Support I have secondary/progressiveMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.485 / Virus Database: 269.13.7/992 - Release Date: 9/6/2007 8:36 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Welcome Daryl. I'm glad you found us and joined. I hope you will find this group a better fit for you and a better source of support. So you have had MS for 30+ years? What year were you diagnosed? I know I've had MS for 30+ years, as well, but I wasn't diagnosed until 1998. Like you, I have SPMS. I also deal with chronic pain. What kind of pain do you have and where is it? I have nocturnal leg pain and back pain. Do you have spasticity? What other kind of symptoms do you have? Are you still walking?Are you on any of the CRAB-T drugs now? I used to be on Avonex but I quit it on my own in 2003. I look forward to learning more of your experiences and getting to know you better here on the group.Sharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Support I have secondary/progressi veMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2007 Report Share Posted September 7, 2007 Welcome Daryl, This is the group for you, it's like a big family. I'm nne'shusband and have all the signs of MS except a confirmed diagnosis. I know you will be happy here.BlessingsChuckLove and friendship builds a bridge that spans forever.c.f.s. Shape Yahoo! in your own image. Join our Network Research Panel today! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2007 Report Share Posted September 8, 2007 Daryl I want to welcome you to the group as well.. though I'm a bit late at it. I'm sorry that you didn't find what you were looking for in the other group, but you will have found home at last! And this place is HOME.. I just returned to the group, after several wandering years following a severe computer crash, and then the lack of either ambition or time to find my family once again.. I'd remember the group, but couldn't remember the name, and would run out of time searching through the yahoo groups trying to find it. Following the death of my son last year, and joining a grieving mother's group, that just didn't fit my personality much, I decided that if I had to sit for days going through the groups I WAS going to find my way home to the group! And it is HOME.. we seem more like family, in most cases, than our own families.. I think because we understand that one of us saying "I'm tired" is NOT the same as when we hear the reply from a family member "Yeah, I'm tired too".. Let me introduce myself... My name is |}onna and I'm from Pennsylvania. We have two other Donna's in the group that I know of.. one is in Washington and the other in Mississippi (if my brain warts haven't twisted that in my memory).. You will find that I am the one person who will turn a one sentence reply into a novel.. It just happens.. I think it's genetic.. my dad does the same thing.. I'm 48 years old.. at least for another 8 days.. I was diagnosed in August/September of 2000, but history shows that I've lived with the MonSter for at least 10 years prior to diagnosis. I didn't have any of the delays or problems with receiving my diagnosis that others in the group have had... I passed or failed every one of the tests (depending on how you look at it) with flying colors for a "Definite" diagnosis. For the first four years after diagnosis, I endured Avonex. I say endured because those flu-like symptoms that "usually" go away after 3 months... didn't... I took myself off when I read some things in the fine print of the insert that I didn't like, that weren't part of one of the first inserts, and I already knew that the Avonex wasn't slowing my progression any longer. I figured why progress AND still be sick every week? I started Copaxone on October 18th of 2006, and wonder why my neuro didn't prescribe it in the first place, especially when the flu symptoms continued.. Guess he just didn't listen, or he just didn't care..or maybe the incentives to keep prescribing it were greater than any of the other incentives... That's one of the reasons I now have a NEW neurologist, who was completely shocked that the old neuro continued the Avonex even though I continued to have the symptoms... LOL I suspect that I'm in the Secondary Progressive phase, though the OLD neuro wouldn't classify it as that.. he said something like Remitting Progressive or Progressive Remitting, because even though I was progressing, I still had relapses.. and you got to keep the word Remitting in there to have insurance companies pay for any of the CRAB-T drugs... It's great that you've found us, and I'm sure you've got a load of information that you can help us with... Just feel free to jump in anytime anywhere and add your insight.. |}onna Support I have secondary/progressiveMS and got NO support from my MSN MS group! My profile was deleted and I didn't feel welcomed there. I am in chronic pain all the time and the internet is my only access to the world. The only time I get one on on contact is when I am in rehab. 30+ years with MS and I think I have something to offer, but no one wants to hear from someone as bad off as me. Not on MSN anyway. Thank You for letting me join your group. Daryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2007 Report Share Posted September 9, 2007 Hi Daryl, Welcome to the group!!! I'm Peggy, 40, RRMS since 7/27/06 and love this group!!! People are wonderful here. I'm sorry you had a bad experience with your other " support " group, you won't find that here. Everyone has been great to me and I'm somewhat of a newbie myself. Again, welcome!! Hugs, Peggy > > I have secondary/progressiveMS and got NO support from my MSN MS group! > My profile was deleted and I didn't feel welcomed there. I am in chronic > pain all the time and the internet is my only access to the world. The > only time I get one on on contact is when I am in rehab. 30+ years with > MS and I think I have something to offer, but no one wants to hear from > someone as bad off as me. Not on MSN anyway. Thank You for letting me > join your group. Daryl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2007 Report Share Posted September 9, 2007 Hi Daryl, Welcome to the group!!! I'm Peggy, 40, RRMS since 7/27/06 and love this group!!! People are wonderful here. I'm sorry you had a bad experience with your other " support " group, you won't find that here. Everyone has been great to me and I'm somewhat of a newbie myself. Again, welcome!! Hugs, Peggy > > I have secondary/progressiveMS and got NO support from my MSN MS group! > My profile was deleted and I didn't feel welcomed there. I am in chronic > pain all the time and the internet is my only access to the world. The > only time I get one on on contact is when I am in rehab. 30+ years with > MS and I think I have something to offer, but no one wants to hear from > someone as bad off as me. Not on MSN anyway. Thank You for letting me > join your group. Daryl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2007 Report Share Posted September 9, 2007 Hi Daryl, Welcome to the group!!! I'm Peggy, 40, RRMS since 7/27/06 and love this group!!! People are wonderful here. I'm sorry you had a bad experience with your other " support " group, you won't find that here. Everyone has been great to me and I'm somewhat of a newbie myself. Again, welcome!! Hugs, Peggy > > I have secondary/progressiveMS and got NO support from my MSN MS group! > My profile was deleted and I didn't feel welcomed there. I am in chronic > pain all the time and the internet is my only access to the world. The > only time I get one on on contact is when I am in rehab. 30+ years with > MS and I think I have something to offer, but no one wants to hear from > someone as bad off as me. Not on MSN anyway. Thank You for letting me > join your group. Daryl > Quote Link to comment Share on other sites More sharing options...
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