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Should I take meds?

  • By MSGramma

    My journey started 8 years ago when I had a MRI for headaches. I was told then that I had MS that the images screamed MS. But I didn’t have symptoms that I knew of so doctor and I decided to monitor. 5 years of MRIs and no changes I skipped a year because of “life” 7th year my images showed progression Not a lot but some. 2 doctors want me to start meds but basically my not symptoms are muscle fatigue in legs but strength is good. Thighs mostly they burn just walking up a flight of stairs. Brain fog at times and Fatigue is pretty constant. May concern about the meds are that they don’t help with symptoms they are just suppose to slow progression but I haven’t really progressed. And these meds are heavy duty stuff for your body. I’ve never had any “traditional” symptoms so I’m really confused about it all. I’ve had every test under the sun except LP and there is no other reason for the fatigue or weakness.
    Have any of your folks dealt with same symptoms and what have you done. Any information is greatly appreciated

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  • By Kim Dolce Moderator

    @msgramma, after reading through your description twice, I see a pattern that you did in fact progress–from brain lesions and no symptoms (although chronic headaches can be an MS symptom too) to leg fatigue and burning, brain fog and constant fatigue. These are classic MS symptoms.

    Multiple sclerosis disease-modifying drugs can slow your decline, reduce the number of relapses, and keep your disabilities and/or lesion load from worsening. It ‘s like taking out insurance, you’re doing it for your future. We generally take a disease-modifying drug (DMD) plus symptom medications. Even if you don’t want to start a DMD, you can try medication that help with burning and fatigue, and most other problems that crop up. Discuss this with your doctor.

    For the first five years after my initial MS attack, I took no drugs and suffered practically no significant problems. But the second attack left me with some permanent numbness and weakness in my left hand, arm, and leg. Then I started a DMD. I relapsed the third time five years later and sustained even more disabilities that required taking more meds. I started using a cane and retired from work life.

    I take a muscle relaxer for spasticity, gabapentin for burning/pain, Vesicare for spastic bladder. I work out at a fitness club to keep muscles conditioned and increase metabolism. Medications, exercise, PT when I need it, heating pads and self-massage are all the tools I use and I’m holding steady.

    We can’t predict what will happen, but we can use what’s out there to give ourselves the best shot at the smoothest journey. It’s a long road with MS. I hope you’ll find some relief very soon. Please update us on your progress. Best, Kim, moderator

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  • By MSGramma

    Sorry if I was confusing before. I was typing on a phone which takes too long. My confusion with all of this begins with how I was diagnosed or lack there of. I’m not convinced that I have MS and I’m not sure how to prove or disprove the diagnoses. The MRI that discovered the legions was because I had a fender bender and my headache wouldn’t go away. Symptoms I do have that have not been explained by any medical reason is the fatigue and thigh & glute weakness. i suppose some of my mental status such as memory may be due do MS but I’m also 50 and it’s also normal aging process. My doctor wants me to start on Copaxone but honestly i’m terrified at the thought of daily injections that make me feel worse and do nothing for the issues im having now. I’m confused because for 5 years nothing changed and then during the 2 years that more lesions appeared according to my latest scans I don’t recall an episode/relapse that happened to account for new lesions. Also, 7 years ago when I was first told that my brain scans “scream MS” I went to the Shepard Center in Atlanta. They looked at my scans and said they don’t “treat scans only symptoms” and that I didn’t have any symptoms that warrant MS treatment.
    Maybe I’m in denial?? I’m finally in a place in my life where my kids are grown and out of the house. My husband and I live on the lake with some great friends that like to go out and travel a lot. I want us to enjoy this time so I push myself even through my fatigue because I don’t wan to miss out or have my husband miss out on fun. In actuality I could sleep or at least lay around most of the time.
    i know i am all over the place but i am so unsure about so much I’ve seen 2 doctors and still have so many questions and concerns. I’ve read and read things on the internet but all that seems to confuse things even more.

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  • By vvxjr9

    MSGramma – It’s difficult to know for sure whether to take the meds. I think I have plateaued on my bi-annual MRIs after taking Tysabri for five or six years. I know that we are supposed to undergo our DMD, but it’s tough when for some us it is not even noticable or helpful. I would like to try some other DMD since I am very tired of the monthly infusion.

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    • By Kim Dolce Moderator

      Mavenclad is a brand new oral therapy, and there are other pills you can take such as Gilenya, Aubagio and Tecfidera, the last of which I’ve been taking for six years.

      Here are links to information discussed by Dr. Aaron Boster on his many youtube videos about the newest therapies: Mavenclad and Mayzent. In the second list, he discusses his picks for the best most effective therapies.

      https://www.youtube.com/results?search_query=Dr.+Aaron+Boster+mavenclad

      Best to pore over this information and discuss with your doctor.

      Kim, moderator

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  • By hanakoms

    Try ocrevus it is an infusion every 6 months ask your Dr. For me it has helped after about 4 to 5 months you feel a bit weaker and when you have infusion back to normal. Exercise to keep your strength and eat well no processed foods.

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  • By vvxjr9

    MSGramma – if you are still having questions and feeling uneasy with what you have been told, you sure get another neurologist’s opinion. It doesn’t matter if it’s your third or fourth opinion, you have to find a neurologist that you feel comfortable with and trust.

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    • By MSGramma

      Thank you to all of you. I’m looking into options and getting different opinions. But basically I’ve decided to take it slow in making a decision. I’m due for my yearly MRI’s in March so doubtful I will start Meds before then. I’m back on Adderall for my ADD and that does help with the fatigue as well. I may need to get back on an antidepressant for mood and I’m about to join the YMCA to begin a workout regime in hopes of helping with the leg pain or at least keeping why little muscle I have functioning. Accepting all of this is my biggest challenge. Prayers for that.
      I hope all that red this are doing well
      Again, thank you

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    • By Kim Dolce Moderator

      MSGramma thank you for giving us an update! Seems as though you’re doing all the right things. Fitness programs usually benefit us all in some way, so glad to know you’re pursuing that. Please do come back and let us know the latest. Best, Kim moderator

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