Still fighting

I am Cindy. I am new. This is my first time to join a group like this. I am 58 and was finally diagnosed in August 2014 but have had symptoms for several years. I have never had vision problems so they didn't think it was MS. They said you have bulging disc's and sent me to physical therapy. It was the therapist who knew something more was going on. I have problems with walking. I have to use a walker all the time or a wheelchair if there is much walking. I try to keep as active as I can. I am taking Copaxone but I don't know if it is helping. I would like to know if steroids has helped anyone. I asked my doctor about them for me and he said won't help. My walking and weaknesses is getting worse. I have alot of balance issuses and have fallen many times. I get tired very quickly, is there something that can be done to help that? Does anyone know if there are herbs that can help?

30 Replies

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  • @cljones

    Dear Cindy, First of all, WELCOME! 👋🏼 of This is a wonderfully supportive group of MS patients and we all share similar challenges. We are all sorry that you have MS, but at least here, you don't have to waIk that path alone! I think you will be really happy that you joined!

    You have asked a lot of good questions and many people here will give you feedback and encouragement. 😊

    I'm sorry to hear that it took so long to get a correct diagnosis. You asked about steroids. Have you ever had them? Typically that is among the first treatments a new patient gets, to quiet the immune system down. After that, steroids may be given for relapses.

    For low energy, I have found that Provigil/modafinil helps a lot.

    For difficulty walking, I have found that Ampyra helps.

    It's not my place to say whether or not your doctor is good, but I will tell you that it has been my experience that getting a second opinion is a good idea!

    It is getting late here on the east cast, so I will wrap it up, for now. . . Have a great night!!

    Lisa

  • Thanks! I am on Ampyra now.I don't know how much it is helping but I don't want to stop just to find out. My doctor is the only one that would take me around here. The only other one to accept me is almost 2 hours away. That wasn't a good option. I asked my doctor about steroids but he said it won't help but didn't explain why. I guess I should have pressed the issue. I go next week for new MRI and see the doctor I may ask again.

  • Remember, you have the right to question him! Read up, ask questions! Empower yourself!

  • Welcome Cindy. I was given steroids in the hospital when I had my first ms attack. I had hardly any use of my left arm and could hardly walk. After 5 day steroid treatment I my arm was fine and I was walking again. As far as fatigue I take modafinil and amantadine. Took a few weeks but it's finally helping quite a bit. Hope this helps. Good luck and God bless you.

    Donnie

  • Welcome to the group Cindy! This is a great group for information and support. Steroids help some people but not everyone. Also, depending on your other medical conditions your doctor may not want to put you on them. I agree with Lisa, a second opinion is always a good idea. I actually went to 2 other doctors before I found the doctor that fit with my personality, would listen to me, give me the information I needed to make my own decisions, etc. Because I had such extremely high blood sugars (over 500 even with triple my usual insulin) from a low dose of steroids for bronchitis several years ago my doctors will not give me the steroids.

    I and others have had some success and relief of symptoms from essential oils, diet (Paleo, anti-inflammatory, Walhs Protocol and others), exercise, and supplements. For a while, I saw a naturopathic nutritionist and felt better than I had in years. Unfortunately, since it is not covered by my insurance, I was unable to continue the supplements and visits.

    Some people also find physical therapy, occupational therapy, massage therapy and equine therapy helpful.

    I too must use a walker all the time and if I am going to walk far I have to use a mobility scooter or wheelchair. I also have a service dog who helps me. She retrieves items I drop, helps to pull me up from a seated position, and many other things. She is also a great sounding board when I am scared, frustrated, worried, etc. She totally accepts me for who I am and never looks at me with pity in her eyes.

    These are just some of the things that can help you to deal with MS. You have to do your research and decide the path that is best for you.

    I'm sorry this is so long and that I got off on a rather large tangent.

    Once again, Welcome to the group!

    Jacqui

  • Thanks I don't have any other health issues besides MS so I don't know why the doctor won't try them on me. I guess I need to ask more questions,like why. I go back for more MRI's next week maybe I will get some answers.

  • Jacqui, which essential oils do you use, please?

    Thanks!

    Lisa

  • I use a bunch of them but the ones I use the most are Frankincense mixed with fractionated coconut oil (for my migraines and to help with my concentration). I also use what I call my "Wake Up blend". I use this for helping with fatigue, helping to clear brain fog, uplifting my mood, etc. I mix lavender, peppermint, wild orange, and frankincense and put all of this in an inhaler. I make a lotion of shea butter, almond oil, lavender, helichrysum, and peppermint. Really helps with the all over itching I get.

    The final one I diffuse each night to help with sleeping. It is a mix of Lavender, Breathe, and Geranium.

    I also make my own chapstick. Works better than anything I have bought at the store. I love trying new combinations and making my own items.

    I use oils from more than one company.

  • @bygonelines Thanks so much for sharing this! It's very interesting and worth trying, I think! 😀

  • cljones

    Not sure if appropriate for you but perhaps ask your doc about Ampyra for walking.

  • I am taking Amperage. Thanks

  • Welcome to a marvelous place full of helpful, supportive people. I've found so much encouragement here!

    I agree that a second opinion may be a good idea. There may be very good reasons why steroids would not be helpful for you right now or at all, given your particular circumstances. I would ask about medicines that may help your energy levels.

    It may help to keep a brief log of your symptoms and write down any questions for your doctor. We can easily forget important symptoms and questions.

    I hope you feel more energetic soon.

  • Thanks for the suggestions.

  • I am also 58 and was diagnosed in Sept. 2014. Very similar! Earlier this year I had 5 days of steroid infusions. It gave me a lot of energy, but unfortunately for me, it only lasted about 6 weeks. (While it lasted it was great! I painted my living room!) It gave me (for a long time) a terrible taste in my mouth. I lived with peppermints in my purse.

    I feel very similar to you. Haven't started with a wheelchair yet and am hoping not to, although longer distances will lay me up for a few days where I just am exhausted and can't move. I use a cane for stability. I tried Copaxone which I was allergic to, and Tecfidera which made my white blood count drop like a stone. Now I'm on Aubagio which seems to be working well, or as well as any of these things do. Just had an MRI of my brain which showed things stable but am having another on my neck and spine in 2 weeks. (WHY couldn't they do both at one. That stupid dye burns!)

    They are talking about more steroids again. I'm not happy about that and let them know. I hated that nasty taste in my mouth! I had oral steroids for 9 days a couple months ago for my RA and it helped, but brought that taste back. Right now I'm in the middle of dealing with the remains of the contents of my mom's house as we just had to move her into a nursing home. STRESS!! That's the worst for me.

  • We do sound similar. I am getting 3 MRI'S next week. They are doing all three the same day, then I will see the doctor right after. It is nice to get it all done the same time.

  • They probably would have done all of mine at once but they thought it was probably in my head! Now they're double checking for anything in my neck and spine. The last time they checked there all they found was arthritis (which I didn't know) and a tumor in my thyroid (had all that taken out). Was glad they found that!

  • The last time the doctor only did the brain even though he found the lesion in the MRI on my neck.I am seeing the APN and I like her better than the doctor. She ordered all three.

  • That's who I'm seeing now. I see the neuro twice a year and her in between. She speaks English and not "Doctor" to me. She communicates with the neuro so I don't have to! I like him, okay. He is one of the top MS doctors in the country so I can't complain. But I do relate to her much better.

  • Yes my doctor is Chinese and hard to understand. The APN seems to have more time.

  • Mine is from Taiwan but his English is good. He just doesn't take as much time with me as she does.

  • I see my APN more than my Dr. she is more aggressive in my treatment and more bold. She goes to the doc and gets the approval for what we think is best! So, if that relationship works, and this is the only doc around. Use that to your benefit!!!

  • @cijones

    Cindy, on a practical note, try to use the bathroom before your 3 MRIs. It's a long time to be in the machine! Lol 😂

  • Thanks I had thought about that. Also not drinking much before.

  • I have to drink a LOT of water before. Otherwise they can't find a vein. The last time it took 10 minutes and they ended up sticking me in the back of my hand. Ouch!

  • Yes I plan to drink a lot the day before but not a lot that morning hope it helps.

  • cljones, You could be me! I get tired easily and my balance is bad. I take 10mg of Prednisone daily and it does help me.

  • @cljones First of, HI! And welcome to THE BEST SUPPORT GROUP OF ALL TIME! I am sorry we have to meet over this stupa monster called MS!!

    I have a couple of things you need to add. One. Sounds like you need a new Dr!

    Two, if copaxone isn't working, probably time to try something else. But steroids may jump start it! I have had steroids many times. Sometimes they give me a temporary boost, sometimes a long term boost!

    I truly hope and pray you get the answers and help you need from your Dr or a new Dr!

    Also, welcome! It's great to meet you!

    Love to all!

    Rob

  • He was the only doctor in my area that would accept me. The other option was to drive almost 2 hours away. I see the APN now and she seems to be better than the doctor. I go next week for MRI'S and to see the APN again so we will see. Thanks

  • Hi again,

    I forgot to mention that my neurologist told me that it takes 9 months for Copaxone to work. She was involved in the development of it years ago.

    I don't know the research supporting that but FYI anyway! It may be worthwhile to wait?

    The other thing with steroids is that they tend to reserve it for relapses so if you've started DMT treatment and things are "stable" your doctor might think it won't help if he/she thinks you aren't having an active flare.

    I still advocate for getting a second opinion, but wanted to share this too. 😊

  • I have been on Copaxone for 3 years. On Ampyra for about 2 year and a muscle relaxer for 1 week.

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