Skip to content

    Announcements

    Attention All WebMD Community Members:

    These message boards are closed to posting. Please head on over to our new WebMD Message Boards to check out and participate in the great conversations taking place: https://messageboards.webmd.com/

    Your new WebMD Message Boards are now open!

    Making the move is as easy as 1-2-3.

    1. Head over to this page: https://messageboards.webmd.com/health-conditions/f/multiple-sclerosis/

    2. Choose the tag from the drop-down menu that clicks most with you (and add it to any posts you create so others can easily find and sort through posts)

    3. Start posting

    Have questions? Email us anytime at [email protected]

    Includes Expert Content
    Newbie/scared to death...
    avatar
    leonaiz2 posted:
    I've known for sometime that it was possible that I had MS; I have had symptoms for years that I couldn't attribute to anything specific. Over the years and with a little research I guess I self diagnosed myself and had to strive to get down to finding out for sure. I have Relaxing-Remitting type; so far I am on no meds specifically for MS but I've been taking Neurontin for years for nerve pain In my leg due to a nerve being nicked during a hysterectomy surgery in 2007. Dr. increased my dosage. This diagnosis was very hard to take beings I already have a number of other issues such as another autoimmune disease Hashimoto Thyroiditis, Diabetes 2, HBP. What bothers me is that unless someone is really in tune with you they don't notice that anything is wrong with you. I've had balance/coordination problems for years and people just think I'm clumsy. Even more annoying to me is that I've lost a lot of muscle strength/control in my legs and cannot walk any distance anymore. I've resigned myself that on some days I have to ride an electric cart when at the store; people either look at you with pity, or ignore you like you don't exist (makes me mad). Concentration problems are frustrating to the point sometimes that I just don't want to deal with anything that will present to be a challenge for me. I moved to FL in 2011 to take care of my now 92 year old father but I cannot do 30% of what I used to for him, and I think he thinks that I'm just lazy and that hurts me deeply. I've heard him talking to my sisters this past Thanksgiving telling them that the house is messy/dirty and I'm not keeping up. Some days its all I can do to get up, take my dog out, shower & feed myself; other days I may be able to do that and some laundry & light housework like vacuuming. Even vacuuming can zap all my energy; sometimes my Dad sees me taking breaks between rooms and sitting down until I get the strength to finish (sometimes I don't). Recently I went to the movies with a male friend of mine; he parked in the parking garage near an elevator to make it easier for me but had to walk a slight incline across a walkover to get to the theater and then up a flight of steps. I had to stop and rest a few times on the way which made me feel helpless and embarrassed because when I met him four years ago I wasn't like I am now. He is very understanding, but we used to go more places and did more physical activities like walking the beach, walking trails at state parks/springs, all the things I enjoy but can't do without extreme difficulty. Please share your experiences with me so I don't feel so alone in my challenges...TNX
     
    avatar
    hackwriter responded:
    Hi leonaiz2,[br>[br>I wrote a long response to your post but it flew off into the cyber ether--so I'll try to reconstruct my thoughts. I so wanted to respond to you! If the former response magically appears, this would be the reason for my dual posts.[br>[br>You are so not alone with all of the challenges you've described. I too had a delayed diagnosis--what a stressful time that is, probably the worst part of the disease process. I have the same leg weakness problems you have, and I've been taking Ampyra for that for about two years now. I'm very fortunate to be one of the 40% of MS patients to benefit from this drug. It has strengthened my legs to the point where I can walk through a grocery store without feeling like I'm going to fall down in the dairy aisle. I still need a cane, but not any other mobility aid.[br>[br>I'm on the dating scene, too. Your fears and doubts are well understood. I'm seeing someone too who is accommodating and understanding. But I still grieve over what I've lost and what activities I can no longer share with a companion.[br>[br>Family is a tough one. It took years for my family to even acknowledge my disease. But now I can speak freely to my siblings about it and get support, sympathy and understanding. Our parents are too old to take in what we are experiencing, I'm sorry that your dad is hurting your feelings with insensitive remarks. I hope your sis knows the bigger picture and expresses her support to you.[br>[br>I'm glad you reached out to us and I hope more people respond to you. It makes us feel less alone when we can talk to others who are experiencing this disease. [br>[br>Kim[br>[br>
     
    avatar
    Stephanie Butler, RN responded:
    Hello and welcome to our community Leonaiz2!

    I am also "newly diagnosed" (within the last 5 years), but in retrospect have been having relapses and symptoms for a long time. My MS journey has been very up and down. At times I have been dependent on a cane and wheelchair for mobility, and at other times I can wear heels and walk pretty far without having to rest. The hardest part for me has been picking myself back up after a setback, but it's unfortunately just something we have to be prepared to do. It helps when you are surrounded by supportive people, but as you have found MS can be difficult for other people to understand because many of the symptoms are invisible. When it's coming from your own family it is especially difficult, and the only thing you can really do is try to teach them about MS so that they will understand how the symptoms affect you on a daily basis.

    I would encourage you to also work closely with your doctor to improve your symptoms as much as possible. There are many medications, therapies, and interventions that can be done to improve our quality of life. I hope you find something that works for you soon!

    All the best,
    Stephanie
     
    avatar
    leonaiz2 replied to hackwriter's response:
    Thank you do much for your reply to my "newbie" post...it helps to share experiences.
    I joined the Y free compliments of my medicare advantage plan I am a silver sneakers member; last week did three classes geared 4 us older folks, did done work on a recumbent cross trainer, then on Fri did some water therapy. Sounds all good, but it was hard just with the walking around Y undressing, showering, dressing again and then manuvering my way back to my car. I'm sure you can relate...
     
    avatar
    Stephanie Butler, RN replied to leonaiz2's response:
    Good job! I can definitely relate, it takes a lot out of you but in the long run it will pay off. I tend to like group classes, they are more fun then just working out alone so I'm more motivated to exercise. Just be sure you are going at your own pace, and if your symptoms get worse when you are overheated you might find that using a cooling towel and staying hydrated while exercising is helpful
     
    avatar
    hackwriter replied to leonaiz2's response:
    HI Leonaiz2,

    Definitely can relate to the gym experience. I did aquatherapy for a while. When I left the buoyancy of the water and stepped out into full gravity again, it was all I could do to drag myself to the locker room, struggle out of my wet things, dry off, dress, and hobble to my car. It's a private epic battle we fight each time, only without witnesses, achievement medals, or battle scars--unless, of course, we fall on our faces before we get through the door, lol!

    Kim
     
    avatar
    Stephanie Butler, RN replied to hackwriter's response:
    Yes! I had a VERY similar experience. Now I find that working out at home saves a lot of energy, and makes it much easier to fit exercise into my schedule. There are a bunch of different apps for your phone and videos on YouTube, so you can really vary your workouts and keep things interesting. I'm trying out a Yoga app right now that I really like...and sometimes I can even talk my husband into joining me


    Featuring Experts

    Stephanie knows multiple sclerosis as a patient and as a nurse. Stephanie was diagnosed with multiple sclerosis in 2013. Shortly after being diagnosed...More

    Helpful Tips

    SSDI
    Hi whitefrazier - I live in OH, it took me over 2 years and 3 tries. The last try I obtained an Attorney. My age was 40-42. There is a ... More
    Was this Helpful?
    1 of 1 found this helpful

    Related Drug Reviews

    • Drug Name User Reviews

    Report Problems With Your Medications to the FDA

    FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.