Neuro checkup appointment today

I have my regular 6 month neuro checkup today. I hope he has my latest MRI results because I'm not sure if I'm still in a stable state and I'm curious what the MRI will show. I've always thought it was weird that the MRI's can look stable with no active lesions but my symptoms can be worse. I also want to talk to him about Ocrevus.

The nystagmus in my eyes that is the bain of my existence has for sure worsened. I'm wondering if it could be the new drug I'm on for incontinence. When I looked it up...sure enough...blurred vision can be one of the side effects. But then as I was reading more about the drug, I was horrified to discover that it is one of many that has been found to be linked to a higher dementia risk!!! I was shocked to see this so I've printed out the research to take with me to my appointment. I like my neuro and generally he makes good recommendations but this is freaking me out.

And because I never do anything the easy way...LOL...I'm also meeting with a realtor to talk about finding my next home. I've been staying with my sister and family since September and while I'm grateful, I'm anxious to be back in my own place. I wanted a small house again, just smaller than the last one with less yard. Everyone and their cousin who seems to have an opinion on what I should do thinks this is crazy and that I should live in a condo instead. So...I'm confused about what would be best. A condo feels like I'm giving up more of my life to M.S. but on the other hand I consistently overestimate what I can do.

18 Replies

  • I know what you mean about giving up so much to MS.

    Look at the realities, can you , on your own, keep up with the maintenance of a house and yard or are your finances such that you can, and will, put out the money for someone else to do it. Not asking these questions so that you will tell me but so that you will take a long hard look at the answers. I love having a yard and working in the flowers and vegetables each year but I am having to ask myself the same questions.

    We have to make choices sometimes and I am coming to the conclusion that it is that time for me, have a beautiful yard and have no energy for anything else or a neat, simple yard and maybe, on some days, have the energy to do other things.

    Only you know the answers.

    Take care friend and be good to yourself.

  • Hi Morllyn...those are the questions I have been asking myself. I just can be really stubborn about giving M.S. one more inch even when it's sensible.

    I have always loved gardening but as the fatigue I experience has gotten worse, it's been harder. I paid someone to mow the lawn and do some basic upkeep at the house I just sold. The hard truth is that the planting beds would often get away from me when I didn't have the energy to do what was needed.

    Now that my income is changing from a full time job to disability pay, hiring landscape help is probably a luxury I need to do without.

    My new goal is to figure out how to replace or substitute what I'm giving up.

  • Raingrrl

    My husband got a guy to build a low wooden bench, about 2 ft. off the ground, 2 ft. wide and about 8 ft long. Then we took a couple of those plastic 55 gal. drums and cut them in half. Now we have 4 raised beds to plant in and I do not have to bend over to work in them. My husband can even help with the planting, weeding, watering and harvesting, which he could not before due to his physical disabilities. We got them finished at the end of last Summer and planted lettuce, onions, garlic and beets. This was just a test to see how it would work. I saw a really nice idea online. There are large metal troughs, that are used in feeding cattle, maybe 2 or 2 1/2 ft. deep and wide by 6 ft. long shaped like a capsule sort of, and I have seen them used as raised beds.

    So maybe we do not have to stop our gardening for now, just scale back.

    I applaud your will to not give in to this disease, keep on with that toughness lady.

  • Raingrrl How did you appt go? Did you get to talk about Ocrevus? I miss doing all the yard stuff. We have a yard guy now and I can still do a minimal amount. We know one day we'll have to give it up when it gets too much.

    Just a thought... Could you maybe rent a house? If the yard got to be too much, you wouldn't have to sell it. Or, maybe you could do flowers and vegetables in pots.

  • Hi Iona60! Renting isn't an option because of the crazy real estate market here. I just need to purvon my thinking cap and figure out how to replace what I'm giving up.

    Ironically I said I'd never live in a condo. I know better than saying 'never'. Hah!

  • Raingrrl You'll figure it out!

  • Hi Raingrrl, I can't wait to hear how your appointment went. As regards your house, be true to yourself. Move to where you know you can find contentment . There may have to be a little compromise because of the ms, but take into consideration your ability to up keep . I pray that you will find the ideal home in the right location, blessings Jimeka 🦋🌈 🏡

  • Hi jimeka! I know I'm going to have to compromise but how to do that without feeling like I'm giving up a lot to M.S. is the chalkenge. The truth is that I don't have the energy for a lot of upkeep any more. I like to think I do but that's just my stubbornness getting in my way.

  • My neuro said the last MRI doesn't show anything new so that's good. I asked him why some of my symptoms have gotten worse if there is nothing new on the MRI. He said that it is the limitation of MRI's that they can't show everything. He didn't seem too concerned and didn't seem to think Im slipping into SPMS.

    We talked about the weird incident I had last January when I was really sick. My legs collapsed completely and I lost bladder control at the same time. Fun times! He asked if I had had a fever which I did. I don't usually get sick so the whole thing surprised me. He said anytime I have a fever I can expect a pseudo-exaserbation.

    We talked about Ocrevus which I'm putting in a different posting,

  • Glad to hear your appointment went pretty well. I am with you on the house hunt! I have just put my house on the market and am looking for something more maneagable. I love to be outside in the yard working, but haven't learned my limitations yet, and I refuse to give any more to MS. Gold luck with everything!

  • Raingrrl, it's Fancy1959. First of all I want to wish you the best of luck with your neurologist appointment today. I understand your dilemma about having a stable MRI yet your symptoms compounding and seeming worse. This disease is it true monster that has no Rhyme or Reason to it.

    I know it would be a hard decision to go from living in a small house which is your dream to go into a condo. Consider you have the living with your family for the past 7 months. While it may be true you have given up your Independence has MS been more manageable without you having to do the exterior work that house demands? Just because you move into a condo mean you cannot do flowers around the front. Flower pots on a balcony if you have one. Bird feeders and birdhouses the exterior of the condo if you have any trees excetera in the yard. You don't have to have a big yard and a house to make the condo your own. I too often bite off ?more than I can chew when it comes to work especially outdoors. LOL! I know your family i are voicing their opinions loudly but remember they love you and they have been around you for the past six months and they what is best and manageable for you!

  • Raingrrl, I was grateful to see your other post after seeing the doctor.

    I sure understand your feelings about moving. MS is unlike many other diseases in that the course is uncharted for each one of us. I was able to convince my husband that we needed to downsize and simplify from our 20 acre farm. But I don't want to completely change our lifestyle yet. I want to do the moving while I'm physically able and not in a relapse. I feel we should hope and pray for the best and prepare for the worst. No! I'm not ready to just move into a nursing home, but I want to be realistic about my abilities now and in the near future. No one can give us an answer, but we hope to find something easier to clean and maintain. I'll find plenty to do with any extra time and energy! I'm sure you will, too. I'll be praying you find just the right place.

  • Raingrrl, Moving can be such a pain. Some towns have housing developments that have single family homes that are considered townhomes/condos because the condo association takes care of all of the outside maintenance and many offer a once a month housekeeping service for a reasonable price as well. We are looking at those types of communities for when my husband retires. He has already had to give up his big gardens and I have never been able to garden because of allergies. He now has several containers that he uses for gardening. My husband and I tried Condo living and really hated sharing walls with others. So this type of community is what we are hoping to find at that time. We are also hoping it will be a new development so we can customize the home as it's being built instead of having to remodel for handicap accessibility. Good luck in your search!

  • Hi Bygonelines! I know what you mean about shared walls. It's one of the things about condos that concerns me. I can go into sensory overload in a heartbeat from too much noise. The type of development you describe sounds wonderful. I don't know of anything similar locally unfortunately. I'm just starting my search so maybe I'll stumble upon something!

  • My wife and I live in the big house we raised our four children in. I can't do yard work or take care of the pool anymore. I have hired people to do the work but my wife is working too hard inside the house. I can't do much to help her. We own a condo but it is two stories and it does share walls. When we lived there a young couple lived next door and loved loud music. I did not care for vibrating walls. I am looking at 55+ communities. They have mostly single story smaller houses. They have community pools, club house and lots of activities. The only problem is the affordable ones are not in the most desirable locations and my wife is not sold on it. The problem is we are going thru our retirement savings too fast.

  • I've been looking at the few 55+ communities in the areas I'm considering. The affordable ones, (affordable for me anyways), seem to have manufactured homes and I'm not sure that's a good investment. A lot of the manufactured homes are much bigger than I want too. There aren't many around where I'm looking with single story stick-built homes.

    And as for most of the condo communities I've found... they either have two story townhome-type condos or they are in multi-story older buildings without elevators. I'm trying to stay away from stairs because I have lousy balance and I'm prone to falls.

    I have the added challenge of vision issues so I can't live too far out in the sticks and not have transportation options on the days where I'm having trouble.

    I also need to be cautious about how much I spend so that I don't quickly go through my retirement savings. The real estate market has made this a very frustrating exercise.

  • Hi it sounds likely you are still able to do yard work which is a good thing. I don't know where you live, I am talking about the climate if you get snow if you do you might need to shovel. Just something to keep in mind.

    I live in a small home and I did it all shovel yard work but sad to say I can't do any of it any more. Let me tell you I don't mind not shoveling any more LOL I don't do stairs any more Between you and me I think the stairs should be a lawned LOL

    I am just saying this to think of the future I don't blame you I wouldn't want someone living beside me I like my privacy

    THANK GOODNESS I still have my husband

    I hope everything goes well with your Dr appointment have a great day

  • Hi ssdw1958! I consistently overestimate what I can do. Since I'm aware of that... I'm trying to be smart about my next home. Its hard to do in a hot, fast moving real estate market though. I don't want to move so far out that I feel isolated.

    We get snow here some winters but it generally only sticks around a few days. I haven't shoveled it in years...just chose to stay home until it melted. Ice on the roads is a worse and more consistent problem in the late fall and winter months.

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