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MS (Multiple Sclerosis) anybody?.......

yoyoyomonicayyoyoyomonica Posts: 28
edited 06/11/2012 - 8:29 AM in Chronic Pain
I am just wondering if there is anybody with MS here. I have lived in chronic pain for most of my life. It is just aweful. I had back surgery in January and for the most part it took care of that pain. I still have issues in my hip bone but I still have general achyness everywhere else. esp in my shoulders and arms, Feet and legs is pain tingeling and somtimes Zaps in my shoulders and buttocks. I hate MS. IT sucks big time. MS. has taken my life away. I have never felt rite. I have been complainin for years. then I got a new doc who decided to get a MRI of my brain. I am full of lesions, have brain autrophy, and enlarged ventricles.
I figure I would ask out there and see if anybody is here that can relate.


  • I'm sorry about your MS diagnosis. I don't have it but at one time it was suspected in me. I do have a friend with MS and she has suffered so much. She was going to a PM clinic prior to being diagnosed and they let her go because they didn't believe her pain. Right after she went to a GP who immediately suspected it and ran all the right tests. It was a shock to her but she felt validated at last. She had always complained of horrible pains in her back and muscle spasms and was diagnosed as Bipolar. She told me she was started on Fentanyl patches and swore by the Fentanyl lollipops for being very effective for BT pain. The brand name is Actiq and it works in like 5 minutes, but it is very expensive. Maybe your doctor may consider that for you to control the pain from your back and MS. I hope you are on a muscle relaxer because the spasticity of MS is terrible. Well, that's all I know about it and I hope you have better days ahead >:D<
  • yoyo - how are you dealing with this new diagnosis? My experience has been through a friend also...so i will not be able to relate to the emotions, questions etc that you most likely have. But I hope my friends experience gives you hope.

    Mother of Irish twins - 2 year old and 3 year old - hubby is killed in an auto accident and then @ 6 mths later is diagnosed with MS. That was @ 22 years ago - she has raised 2 wonderful girls and is a vital part of a circle of friends. She has not been able to work, but has been helped by Disability, and SSI from her husband. But beyond that she has kept her sense of humor and is now even a Grandmother (sits her grandson 1 day a week)....She battles bad days and enjoys the good ones - She is an example of strength, determination and humor. Keep the faith - find out all you can thru docs, internet and those about you...I wish you the best of luck in this journey and try to keep laughing.
  • I am sorry that you didn't receive more replies - i hope you are able to access support of others in your situaion.

    wondering how you are doing with this news.

    Update us -
  • I had no idea that this disease is not so popular. (meaning not a whole lot of people have it) I am uncomfortable with that. When I go to these MS meetings I feel very alone. Most of the people are older and with social anxiety I am not making any friends. I am broken up. I mean before I didnt know of anybody who had it. Except my neighbors when I was a kid. I appreciate the responces I got from you Meydey and baffled. Thank you for caring.

    I am doing ok with the news. I too feel very validated the pain is more managed now and my back feels sooooooo much better since I had surgery. I am greatful. NOW I have to work on Strength. That is a huge issue for me. I cant even walk around my block very safely.

    This weekend was a MS gala. I got to meet a few people and exchanged email adddresses. We all sat together all weekend long. My hubby was there too. I learned alot and going to participate in the MS walk. Working on getting donations now. If anybody is interested in sponcering me let me know I will send you the link and u can donate in behalf of my team.

    I dont qualify for disability or SSI. I am looking into online jobs but I find only scams.
  • I hope the admins here don't get me for posting another board link here, but there is some MS folks over on the BrainTalk communities Board. The link to the board homepage is: http://brain.hastypastry.net/forums/index.php

    Then you scroll down to the Multiple Sclerosis forum.

    I go back and forth between spine-health and that one for other things. You'll like the people there as well as here. Everyone's very nice and helpful.

    Sorry about your new diagnosis. MS can be scarey but not always disability. I have a friend who's husband had the chronic progressive kind of MS. He had light symptoms for two years and then finally bigger symptoms that got him an MRI that showed multiple lesions. But there are a lot of folks that have it where it doesn't affect them too badly and they can live a pretty decent long life. There's a lot to learn and a lot on the internet to read, plus books and everything. You would probably also like joining the National MS group at http://www.nationalmssociety.org
    They send out great info and a magazine and all.

  • (Do you mind the nickname?) :) You most certainly DO qualify for Social Security benefits. The friend I spoke of is on it. MS is a serious, debilitating disease even if it's mild and you need help. You need to be on it to have it as a back up in case your situation progresses and you can't do sedentary work anymore. I hope it doesn't but you must have something to fall back on. I'm sure if you go down to meet a lawyer, they will take up your case. If someone told you different, don't listen and find another lawyer. Don't give up and apply right away so you can get benefits.
  • enough quarters to pay in the social security required to draw benefits from SSD.

    I also hope that Monica didn't think I wasn't saying it wasn't a disability either. It does sound like her case is bad. I was only trying to cheer her up that maybe hers wouldn't make her feel so bad that she wouldn't feel like getting outside or that her life was over. MS isn't a death sentence basically is what I wanted to tell her. She has a lot of life left and I hope she can find goodness in her life.
  • thank you for trying to help me. I am sorry I didnt get this sooner. I just didnt think anybody was replying I didnt get a email message to tell me that somebody had.

    Yes I dont have enough quarters in the SS system. I have worked odd jobs here and there but not enough to qualify. The rule is that u have to have worked full time for 3 years out of the last 10 to qualify. Terry just got a pay cut and i reported it and dont qualify for SSI yet. I am still looking into a online job and filling out those stupid surveys. IT is a shame to make 1$ for a hour of your time on some of these. *sigh* The anxiety/panic/depression keeps me from working. and now the MS and the back. it just sucks. I have to stay in the back brace for another 4 months. I got that news the other day. And if u know of ppl with MS the heat of the summer dont do any good for us. I sweat like a bloody pig in that brace.
    I am just at a loss. I dont know what else to do. I am heading down the road to agoraphobia again cause I never leave the house. and when I do I start to panic. This is the worst road I have ever been on. And it will never go away.

    anyways. I appreciate that u have written me. I am sorry for not getting back to u sooner.

    And I am going to check that web site u were talking about candle.

    Anyways. I am done babbleing for Now.... I will keep checking in. I dont know how to get a email when somebody responds.
  • Hey, Monica, I did not post here before, did not know what to say... I can relate to a brace, I wore one called a minerva brace for 15 weeks after my accident. It was August and September into October and I would not go ANYWHERE! It was foam lined and indeed AWFUL! ewe, I am so sorry to hear you are stuck in one for so long!

    My PCP has MS, he is amazing as he keeps working even though I do not know how he does it. I feel guilty talking about my pain to him, yet what else am I supposed to do? I hope you find some people to talk to that understand. I hope you do O.K. too. I don't know how else to say it.
  • hugss Wrambler. Those braces are HELL.... I just found out a few days ago at my check up that I get to wear it for another 4 months.grr. so all summer long I will be wearing this sauna and I cant tolerate the heat... grr. I can imagine like u I wont be going anywhere too fast this summer.

    Somtimes I am at a loss for words too. Today is a bad day so far. I am in so much pain i cant describe. There is alot of people who do well with MS. I guess it depends on how u are dx'd. IMHO If u are diagnosed early on u can handle it better. I was given a major PUNCH in the stomach. I will not get better and this is hell.. i guess it is kind of still raw in me. Sorry to be crabby. I do appreciate your friendship.

    U have a good day. I hope it is nice where u are. IT is georgous here. I am going to try to get out today. Enjoy your sunday.
  • I can only imagine that much more time in one of those braces! Oh, I am so sorry to hear that. >:D<

    Thoes are awful! I hope you have spares and can take them off while at home or in bed at least! My wife would not let me take mine off at all! I can remember sliding towells back and forth under that thing to scratch myself and clean off. I used think dish towells, wet one with antibacterial soap and slide it through, then repeat with a damp towell, follwed by a dry one.

    I hope you are out by hot humid time, I did not go anywhere that fall, I could not even sit on my porch. I tried, it just was too nasty. instant sweat and yuck.

    IIRC, Montel Williams has written a book about his trials with MS and how he is managing to keep going. Maybe you can get some insight there? I know it can effect different people on many diff levels. I hope you find a good treatment plan and that it works well!

    It is rainy, damp and nasty here. It's OK though as I am on that backside of the weather and the pain is not to bad right now. With any luck I will have the SCS in place and good program or two setup before the next front comes through! I have to be at the hospital at 7:00 am tomorrow morning for my SCS placement surgery! I can't wait! Sound dumb to be in a hurry for surgery. It's a first for me!

  • Praying for you. I am praying that that scs will work well for you. I let me know how it is going.

    as for my brace.... I do take it off at nite now. I am allowed to wear it only when being still. All other times I have the brace on. It isnt too bad. but I do sweat like a PIG during the day. It is a neoprene brace with lots of velcro and rods too. I can take it and losen it to at least breath some.

    I am trying to take each day as I go. We just added 4 more drugs to my regimen today :( It just never ends.

    Let me know how u are doing.
    God bless...
  • Although I don't have MS myself, I once had a very serious, long-term relationship with a man who did. (My uncle also has MS, as do several of my friends.)

    One thing that he kept complaining about were the cramps in his hands and feet. He would try to bandage them up and wear the braces, but those cramps still drove him crazy. Often, he wouldn't sleep. He would just stay up watching reruns of Law and Order hoping that eventually sleep would overcome him. (He was a lawyer himself, so that TV show was of interest to him.)

    He also shared with me that his emotions were not always under his control. I had a hard time understanding this in the beginning of our relationship, but I grew to understand it more and more as time went on.

    He would also do impossible things like planting flowers in the garden in extreme heat, just because at one time, he was able to do that. The result was always that he would have an extreme flare-up of his symptoms.

    We didn't break up because of his MS. We broke up because of his inability to accept his diagnosis and his unwillingness to accept any type of medication whatsoever. He was bound and determined to continue his life as it was before...he never accepted help in any way, shape or form. He was in a huge denial phase and was constantly depressed.

    In contrast, I have friends who have managed their MS quite well. I know that everyone is different, but just by having an open mind toward new meds or new ways of managing one's condition, they have excelled!


  • I'm sorry you have MS. My GrandMother had MS and I lived with her when I was a teenager 15-17yrs old She helped me with homework and we played cards and scrabble together. We were very close and one of the reasons I became a RN was to look after people like her so that was my dream and calling. She lived a long life and adapted with every physicial problem she encountered. Since I've been ill I've thought of her often and I admired her strength. I know it must be difficult for you at this time. I hope you continue to recover from your surgery. And I hope the meds you've started today will help some of the pain. Best wishes and take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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