Aa
35 yrs with MS & counting
Hi everyone, I pray all of us living with MS are having a fair to middlin' day.This is my first time in joining an online support group. I was diagnosis 33 years ago, back when docs just didn't tell you sometimes. I have had E-R type and have been pretty lucky all in all. I started Beteseron about 18 yrs into the disease. did well, then a few yrs ago switched to Copaxone.
At the age of 57, I am the first line group to decide the question: do MSers even need to stay on a DMD after 30++ years? My nerologist told me that the term Secondary Progressive for somebody like me has a lot to do with the aging process in general. he said that since I haven't had a documented true relapse in many, many years that I might consider going off of this class of med. I take Gabapentin, Baclofen, Effexor XR for depression, (also has anyone had experience with Cymbalta helping for neurogenic pain???),
Let me know your experiences,
jdarie
At the age of 57, I am the first line group to decide the question: do MSers even need to stay on a DMD after 30++ years? My nerologist told me that the term Secondary Progressive for somebody like me has a lot to do with the aging process in general. he said that since I haven't had a documented true relapse in many, many years that I might consider going off of this class of med. I take Gabapentin, Baclofen, Effexor XR for depression, (also has anyone had experience with Cymbalta helping for neurogenic pain???),
Let me know your experiences,
jdarie
Thank you for your info re: Cymbalta. My MD wanted to know if you were/are on othe antidepressants when you started cymbalta. She seems to be reluctant to try it because I already and on Effexor XR 225 mg. I am of the opinion that sometimes 2 smaller does of a drug are better then a larger dose of just one. I have had this type of theray with Effexor XR 75 mg and amitriptiline or Nortriptyline to treat acute flare of trimgeninal or hermites. thaks so much. jdare
You are a person that struggles with a lot of health issues, yet keeps going and has interests. I will use your stories, as strength of spirit, and all the others on this thread when I am having a bad day.
You are a person that struggles with a lot of health issues, yet keeps going and has interests. I will use your stories, as strength of spirit, and all the others on this thread when I am having a bad day.
Thank you to everyone that has added to thic converstation! I am sorry that one decided to move on, but that is not always a poor choice.
This is my first time doing a forum of any kind. but I really can identify with not only all of the comments, but when you said you lost you ability to practice, as a MD, it expecially hit home as their is a pediatrician in my community the is struggling with sveral autoimmune diseases, has had to have chema and is barely able to practice. She if supporting her family. the reasons I left nursing are multifacetd, I do miss that but you are so right that there are other ways to help people. A wise (but flawed man) that lived about 500 years ago, said that our daily work, meaning chores, the little stuff..whatever we are handed is our calling and the how and the means of helping this world.
Thank you for your words of wisdon and kindness.
jdarie
This is my first time doing a forum of any kind. but I really can identify with not only all of the comments, but when you said you lost you ability to practice, as a MD, it expecially hit home as their is a pediatrician in my community the is struggling with sveral autoimmune diseases, has had to have chema and is barely able to practice. She if supporting her family. the reasons I left nursing are multifacetd, I do miss that but you are so right that there are other ways to help people. A wise (but flawed man) that lived about 500 years ago, said that our daily work, meaning chores, the little stuff..whatever we are handed is our calling and the how and the means of helping this world.
Thank you for your words of wisdon and kindness.
jdarie
Quix, I am sorry that someone as kind as you ended up with Him whose Name is Not Spoken. You deserve so much more! Just know that over the years I have followed reading your posts...and late into the night, too! I was afraid for me trying to make sense of losing my body. Hearing confirms there is other like me out there??? I was feeling alone in it. It will be nice to post with someone that understands I won;t be walking across water, or running a marathan or have the strength of a ox, but somE TIMESI can post!!
Later today I h=am going to write a post it may help us aJJ,
Later today I h=am going to write a post it may help us aJJ,
I do not worship Buddha -- I worship Jesus Christ. Do not worry -- this is my last post on this website. I have better ways to spend my time.
I think for anyone that is struggling like you are and have lost so much, having a voice and having a place to voice it is so important. I know it is for me! My neuro made me cry last week because he looked at me and made me feel like I was back to ask or tell him something that wasn't important. It was a misunderstanding but He forgot he was the one that ask me to be there 3 months earlier!!
Keep up the work, just living with this thing is work!!!
Take Care.
jdarie
Keep up the work, just living with this thing is work!!!
Take Care.
jdarie
Hi-I said I would get back to about stopping DMD after awhile. My neurologist said that it is rare to have relapse after a disgnosis 30 plus years ago. but this is his opinion based on his knowledge and what he has experienced. I will admit it is somewhat scary. right now I am having issues with my back, disc contouring my spinal cord between Thoracic disc 7-8. I have had it for awhile but the symptoms of spasms on the right side of this, chest tightness so bad i feel as tho' I can't breath and walking that is greatly affected, especially when this is happening, it makes me wonder. The MD is right in that all of the symptoms I am having could be my MS and that is more then likely what it is. Back to the DMD, if I had only been diagnosed even 10 years ago, I would not consider taking a break from DMD. In 1998/99 is when I first saw the report that in MS that the inflammatory stage goes away. I was so excited until the next part of the newscast that the damage to the site of the oringinal inflammationn continues to deteriorate. Which isn't a strech as our finite bodies deteriorate with time.Depending on genetics, self-care and the universe it varies. I am on a one year trial and will see. If my MRI shows any changes at all then I will know and so too my doctor to get back on a DMD, probably the one I just went off of Copaxone. IT IS VERY INDIVIDUAL AND TAKES WORKING WITH MD'S(with all their shortcomings), RESEARCH AND FRIENDS AND FAMILY.
I will also say this disease is one of the hardest to live with. I know I would be greatly depressed as I already struggle with that because of loss after loss after loss and the grief that goes along with each and every loss, if I could not do what I am still blessed that I can do. I think for any human life is a struggle for many reasons and it is harder still to find the pupose for our lives. But the pupose is still there. I try to read reflections or listen to them from all religious and philosophical areas, one today said, "just ask who's life you touched today and how did you touch it...even if your own?"
I take Effexor XR and Buspar for depression and anxiety. This besides some talk therapy and just time helped me get thru a period inwhich I was so angry, I didn't even trust or felt I needed anyone. It is a struggle!!
Thank you and sorry I broke the rule!!
I will also say this disease is one of the hardest to live with. I know I would be greatly depressed as I already struggle with that because of loss after loss after loss and the grief that goes along with each and every loss, if I could not do what I am still blessed that I can do. I think for any human life is a struggle for many reasons and it is harder still to find the pupose for our lives. But the pupose is still there. I try to read reflections or listen to them from all religious and philosophical areas, one today said, "just ask who's life you touched today and how did you touch it...even if your own?"
I take Effexor XR and Buspar for depression and anxiety. This besides some talk therapy and just time helped me get thru a period inwhich I was so angry, I didn't even trust or felt I needed anyone. It is a struggle!!
Thank you and sorry I broke the rule!!
You know, this is what bothers me. I know my body. For eight years the medical community couldn't find a needle in a haystack. The last three years (four or five visits each year) under the care of a board certified neurologist. Over the years I have struggled with body strength. It wasn't lack of will power that left me unable to dance at my sons wedding or cook for his wedding. It wasn't lack of will power that makes me phsically unable to hold my grandbabies. It isn't lack of will power that led me to give up all my family traditions, my garden, my home, my art. A wheelchair is the last place I wanted to be found. I have cried buckets of tears over it. When my dominate hand became numb I found a new nuerologist. The next day I was in treatment.
After reading MS boards, having an MS nurse visit my home, reading on MS, I think the medical community is still wrong. I don't have boocoo strength anywhere. I can't lift a cake out of the oven. Seriously, I give. I either don't have it together like other MSers or I sure have never known myself. I was the woman that could cook for hundreds. I was the woman doing drywall and plumbing. I was the woman building displays for stores larger than life I was the woman that raised a huge group of kids. I was the woman that gardened. I just don't get it. I just don't.
After reading MS boards, having an MS nurse visit my home, reading on MS, I think the medical community is still wrong. I don't have boocoo strength anywhere. I can't lift a cake out of the oven. Seriously, I give. I either don't have it together like other MSers or I sure have never known myself. I was the woman that could cook for hundreds. I was the woman doing drywall and plumbing. I was the woman building displays for stores larger than life I was the woman that raised a huge group of kids. I was the woman that gardened. I just don't get it. I just don't.
I wanted to apologize if my comments were insensitive in any way -- my neurologist only made the "Use it or lose it" statement after I told him that I have been using a treadmill. He was trying to encourage me as he knows I am in a difficult divorce with a mentally ill man (he has both Bipolar and Schizophrenia).
Anyway, before I took the Betaseron, I was very close to losing my ability to walk. I believe the Betaseron actually reversed my MS -- or this may have been the result of prayer... I made the statement about exercise because many doctors told me to not consider exercise at all -- I did not believe that I had MS so I forced myself to try a stationery bike -- the bike was very old but it was designed to allow my arms to power my legs. The bike helped strengthen my legs so I tried walking on the treadmill. I began with just a few minutes (when I got overheated my foot drag would force me to take a break and cool off and try again), and over time, I lengthened the time and speed. This was not a quick process -- it took me a few years -- but it has improved my walking ability.
I still have the foot drop/drag symptom, I fall often due to balance problems, my legs get numb, my hands/fingers get numb, my bladder fails and I cannot stand to be in the heat but exercise has helped me relieve stress, improve my ability to walk and control my weight. I want to encourage anyone who feels they could try any type of exercise because I believe it may also help them. May God bless all of you.
Anyway, before I took the Betaseron, I was very close to losing my ability to walk. I believe the Betaseron actually reversed my MS -- or this may have been the result of prayer... I made the statement about exercise because many doctors told me to not consider exercise at all -- I did not believe that I had MS so I forced myself to try a stationery bike -- the bike was very old but it was designed to allow my arms to power my legs. The bike helped strengthen my legs so I tried walking on the treadmill. I began with just a few minutes (when I got overheated my foot drag would force me to take a break and cool off and try again), and over time, I lengthened the time and speed. This was not a quick process -- it took me a few years -- but it has improved my walking ability.
I still have the foot drop/drag symptom, I fall often due to balance problems, my legs get numb, my hands/fingers get numb, my bladder fails and I cannot stand to be in the heat but exercise has helped me relieve stress, improve my ability to walk and control my weight. I want to encourage anyone who feels they could try any type of exercise because I believe it may also help them. May God bless all of you.
I am going to my Psychiatrist Friday and hope to share that with her. I am a true believer in combination or what we use to call in the ICCU where I worked as RN a long time ago, adjunct therapy. there is an artical on the NMSS web site under FOR PROFESSIONALS ONLY, it is written by RN BSN. It is on Pain Management. she speaks to small amounts of several drugs in combo. best of luck to you!
Jdarie,
Hello and welcome.
Yes, I have been on Cymbalta for several years. I currently take 120 mg daily for nerve pain along with 2700 mg of Gabapentin (Neurontin). Specifically, I had been experiencing testicular pain for about 10 years.
At one point, nothing was working. I had had several nerve blocks and was taking 140 mg of Oxycontin daily along with Oxycodone for breakthrough pain, all with very little success.
I was finally prescribed Cymbalta by a psychiatrist (long story) who told me that it might help with the nerve pain. And thank God, it did!!! Although it does not eliminate the pain, it has reduced the frequency and intensity. Doctors believe that success is due to a combination of Cymbalta and Neurontin.
Wishing you the best, and hope to “see you around.”
Frank
Hello and welcome.
Yes, I have been on Cymbalta for several years. I currently take 120 mg daily for nerve pain along with 2700 mg of Gabapentin (Neurontin). Specifically, I had been experiencing testicular pain for about 10 years.
At one point, nothing was working. I had had several nerve blocks and was taking 140 mg of Oxycontin daily along with Oxycodone for breakthrough pain, all with very little success.
I was finally prescribed Cymbalta by a psychiatrist (long story) who told me that it might help with the nerve pain. And thank God, it did!!! Although it does not eliminate the pain, it has reduced the frequency and intensity. Doctors believe that success is due to a combination of Cymbalta and Neurontin.
Wishing you the best, and hope to “see you around.”
Frank
I hear you on that one. I just said that to my husband last night, in so many words. I did walk about 50 yards to our hanger last night and it flet pretty good. I took photos of an empty robins nest she had built in a bunc of airplane parts that wher on a shelf. we saw the 5 blue eggs, the the babies but then they wher gone! Anyway, just do what we can but go slow. sometimes i feel better all the way around even grabbing a shopping cart and gooing to a box store and looking around! Especially winter in Alaska.
I love it when someone without MS (like the neurologist above) states "use it or lose it", Does the idiot really think we preferred not to be moving? Does he/she think we don't "use" it out of choice? I doubt he/she will never know what it is like to be in the body of a whipped puppy.
Your comments really helped me. Yes, I really need to start exercising again. I am getting very comfortable stopping the DMD. Just treating symptoms. Good Luck to you with your transitions. I went thru a D early on, moavied in with my perents for awhile. remarried and now have a great, supportive husband. Hang in there, my prayers are with you!
Hello,
I have had MS for 20 years. I took Betaseron for 12 years and then started getting cellulitis in my lower legs. I ended up in the hospital 6 times and had 2 surgeries to remove abscesses from both of my thighs. The Infectious Disease Specialist in the hospital told me that the Betaseron had weakened my immune system so badly that it was actually causing the Celulitis (sp?) I stopped taking Betaseron and had no more Cellulitis. The doctors called me chronic (due to the MS) yet stable (since I did not have any exacerbations for many years.) I stopped the Betaseron 3 years ago, am currently in a divorce and have relocated everythng to my parents' house. My husband is mentally ill and it all fell apart when he refused medication - yet even with this severe stress, I have not had exacerbations. I go for MRI's every year to check and my condition has not worsened. I started to walk on a treadmill when I stopped the Betaseron -- I read where our bodies secrete ? chemical when we exercise and that this helps to heal the myelin sheath on our brain/spine? My neurologist says (kindly), "Use it, or lose it." I believe this and encourage others with MS to do any exercise they can do -- it has changed my life. Good luck to you!! I also tried Copaxone but had an allergic reaction to it. All of the ABC drugs weaken the immune system so I had to stop all of them.
I have had MS for 20 years. I took Betaseron for 12 years and then started getting cellulitis in my lower legs. I ended up in the hospital 6 times and had 2 surgeries to remove abscesses from both of my thighs. The Infectious Disease Specialist in the hospital told me that the Betaseron had weakened my immune system so badly that it was actually causing the Celulitis (sp?) I stopped taking Betaseron and had no more Cellulitis. The doctors called me chronic (due to the MS) yet stable (since I did not have any exacerbations for many years.) I stopped the Betaseron 3 years ago, am currently in a divorce and have relocated everythng to my parents' house. My husband is mentally ill and it all fell apart when he refused medication - yet even with this severe stress, I have not had exacerbations. I go for MRI's every year to check and my condition has not worsened. I started to walk on a treadmill when I stopped the Betaseron -- I read where our bodies secrete ? chemical when we exercise and that this helps to heal the myelin sheath on our brain/spine? My neurologist says (kindly), "Use it, or lose it." I believe this and encourage others with MS to do any exercise they can do -- it has changed my life. Good luck to you!! I also tried Copaxone but had an allergic reaction to it. All of the ABC drugs weaken the immune system so I had to stop all of them.
Also, I've been to Wasilla - lovely country. But I've only been there in the spring, after the thaw. :-)
Hi jdarie and welcome. We love to see people who have lived with MS for a long time come through and share their experiences.
I'm somewhat confused about what the neuro means that 57 year old's aging process parallels SPMS. Can you explain that a bit more? I'm curious, expecially because I am 56. LOL
What are you thinking about stopping the DMD? Couldn't it be that your DMD is working really well and keeping you from having relapses? My head spins when these doctors start talking about no change to people who are being compliant with their treatment and suggesting major shifts to the routine.But my head spins a lot anyway, so it might just be me.
I have no experience with Cymbalta but others here do - I hope they will come along and be of help to you.
Welcome again and I hope we will see you around often.
be well,
Lulu
I'm somewhat confused about what the neuro means that 57 year old's aging process parallels SPMS. Can you explain that a bit more? I'm curious, expecially because I am 56. LOL
What are you thinking about stopping the DMD? Couldn't it be that your DMD is working really well and keeping you from having relapses? My head spins when these doctors start talking about no change to people who are being compliant with their treatment and suggesting major shifts to the routine.But my head spins a lot anyway, so it might just be me.
I have no experience with Cymbalta but others here do - I hope they will come along and be of help to you.
Welcome again and I hope we will see you around often.
be well,
Lulu
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Sumanadevii - truly I know what you are saying. When I was first bedridden with the vertigo and had lost my profession as a pediatrician, had had a horrible divorce, and a bandruptcy (thanks to Him whose Name is Not Spoken) I envied the whipped puppies. The others with disabilities were claiming that all it took was a positive attitude. When someone told me to fight, I could only say, "Fight with what?"
We are where we are and we MUST NOT compare ourselves to others. As the Desiderata states,
"Do not compare yourself with others, for you will become Vain and Bitter. There will always be lesser and greater persons than yourself."
So, we make it through each day and what we do are our own successes. Though I admire her, I am actually annoyed when people tell me about the woman with MS who climbs mountains. She clearly can lift her legs and does not have my fatigue. It's not as if - with a different mindset - I could do it, too. I wish people wouldn't tell me to be so d**m cheerful sometimes.
My little successes are often on this forum. If I can make one person laugh, reassure someone's terror in the night, enlighten someone about the MySterious possessor of their body, or just give some company, then I have had a successful day. I cannot compare myself to a decade ago when it was my gift to be able to safe a little one's life on a regular basis. Sometimes my little success is just making it through the day without crying.
Quix