Neuro visit, MRI, next right step? how to adjust to changes?

[RazCarver]

saw my neuro friday. He wanted to do an LP. I said ok and explained that the hospital he wanted it done at was out of network. He wasn't sure how to set it up with the hospital that is in network. He looked back at my file and said my last MRI was in 2009. so he ordered a brain and c-spine MRI w/wo contrast. He said if it didn't show significant change then it would look less likely to be MS. unless something was found in the csf.

I told the neuro, I didn't care what it was. Something is definitely wrong. I said its one thing to take 10 mins to put earrings in, another to take 10 mins to put a thumb drive in the usb port when I have to do this many times a day as a computer tech. also my ring finger has a tremor or something causing triple letters and mistyping.

my gait is worse. I no longer go to malls, walmart and have to plan when to get to the store. I only go to the store to get dog food once a month. otherwise I get milk at the gas station and food at the produce stand. I can't even go visit friends when they are in the hospital because I know I can't walk that far. if I push really hard then I end up missing work the next day or two because I can't stand up.

all he said was I didn't want to walk far in this heat anyway. I said the heat was a whole different matter. I wasn't wanting to go to riverbend and melt. I was talking about going to air conditioned places. I want my life back. well, is all he said as if that isn't going to happen. Ok, so i really already know that. but there must be adjustments that can be made.

Then he asked if I had fallen any more. Told him a few times, mostly at home but once at work, with a computer - not cool. anything new? reminded him of the tongue tremor. it was much better and losing 18 bls was great, but I still often choke. happens more when I am tired or get to hot. seems to go in spells of a week or so when its worse. and the spilling things and not being able to do my job efficiently.

so, MRI is on the 23rd. I don't know how I am going to manage that. you have to walk forever to get to sign in and then walk to clear the other way to MRI Imaging. we are talking 10 walmart size places, at lest. oh well, it's not today. I'll do what I have to. walk 100 feet and sit down on the floor if need be. do that 20 times I might get to sign in. LOL.

I don't know if I need to be hoping for lots of "significant" change. like lots of bright lesions in typical MS places and a few enhancing lesions, black holes maybe. don't get me wrong I mush rather not have MS, but 5 years and being told I clinically have MS but tests are inconclusive or marginal. I have friends that have talked with me about my gait being much worse in the past year as well as other things. these are friends that are nurses, or work in hospice. they notice things like that.

I live each day as it comes the best I can. I believe in good orderly direction and doing the next right thing. I guess I'm venting a bit here but mostly I'm trying to figure out what the next right thing to do is. I see my neuro again on the 27th to get results back from the MRI and see if he will want to do the LP then. thats the next things but its the working out adjustments that are hard.

I want to be able to go to walmart, the mall or visit friends in the hospital. ok so I need younger friends maybe, but even my friends that are 10 - 20 years older then me walk better and farther. how do I keep up with them, even a little.I wanted to go to the picnic today but I knew better. only one friend understood and yet her feelings were hurt. couldn't i even come for a little while and sit in the shade?

fear of loosing something I have. I know. yet, I don't want to lose my friends. I was a caregiver a long time and I know that lonely hell. I don't want to go back there. stop projecting (even when I see it happening), work on my attitude, help another, live in the now. sometimes these things are hard. yes, life is good.

If you made it through all this you are doing great and thanks for listening. if you have any experience to share I'd love to hear it.

Raz

[anon07072023]

Raz, I'm sorry you're having these feelings. And I really do understand.

I can see your point - whatever it is, being MS or something else, can you at least get some sort of treatment or care that may help you.  And like Lu said, it should also be a clinical diagnosis. A neuro I saw speak a week ago last Friday says that most damage that is done in the brain is unseen to them, but they know it's happening.

Try to keep those connections going with your friends. And of course, stick around here, too. We'll try to help you through this as best as we can.

Hugs,
Kelly

[essdipity]

Raz, I do understand and sympathize. You sound so weary, and sort of battle-worn. I don't blame you.

One practical suggestion--Do go to supermarkets and Walmart, but do use those electric carts to get around. They're kind of awful, but still they make the difference between going to places and not going. Don't waste any energy where you can avoid it. Malls might be out of the question, at least they are for me, but hey, there's always hope.

Thinking of you and sending good wishes,
ess

[Lulu54]

Raz, I made it to the end and knowing this group I am sure others will, as well.  Your frustration being in limbo is understandable.  

My frustration is that you are saying the doctors tell you clinically you have MS but they are waiting for proof?  MS is a clinical diagnosis - MRI machines weren't commonly used until about 20 years ago.  The doctors had to use their observation skills to call MS.

The facility that is doing your MRI should have a wheelchair available for you to use - don't exhaust yourself just getting to the lab.  You might call ahead and ask them to have one available for your use.

Friends are well meaning, but it is hard to not push them away.  Please take some time to think about waysthat you can still interact with them without it being detrimental to your health.

Good luck - you are at a tough spot with this.  Thanks for sharing your thoughts.
be well, Lulu

[MissLauraI]

Raz- I can sure sympathize with you. It is funny you mention Walmart. I hate to go there or the mall or any place where I have to walk a lot to get what I need. I always use a cart even if i don't need it because it helps me to walk. I know I would do better with one of the rolling walkers with the chair on it, but how do I say to my husband I need one of those when I don't even have a diagnosis of what is wrong?

My dr. recently told me there is nothing neurologically wrong with me despite all my sx. My LP was normal so that sealed the deal for him. It is hard to have sx and not want to be told you are sick, but it is harder to have sx and be told there is nothing significantly wrong.

You have my sympathies! I hope you get the support you need. I like your attitude about living one day at a time and helping others. It helps to just stay as positive as possible.