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Thread: Was last here 15 years ago.....

  1. #1

    Default Was last here 15 years ago.....

    Hi All....(I actually posted this over in the neuro org forum, and I was reminded that Braintalk was where I used to post years ago)
    I used to post here back in my 30's, and I'm now 53....so it's been a long time. I remember some of the old screen names. I especially remember xo++ (Mark) as he was always a walking encyclopedia of knowledge. But I recognize a lot of the old screen names here.

    Anyway, I am back because I'm have a re-occurrence of my still undiagnosed neurological symptoms - same numbness and dizziness but now worse and now a new symptom which frightens me quite a bit - leg weakness. I'm having an MRI in a couple weeks - brain, C, & T-spine. As I mentioned, I'm now 53, but I can trace all of this weird stuff back to sensory symptoms and waves of dizziness since I was 28 - so, yes - 25 years of ago. These things waxed and waned for maybe up to 10 years with a few months of nothing in between the 10 years here and there but then poof - it all vanished for 15 years. In those first few years, I had at least 2 MRIs - brain & c-spine - both negative. Never had a spinal tap. MS specialist offered (seemingly begrudgingly), and I was thinking about doing that when my symptoms essentially vanished.

    Well, now this crap is back, it's worsened, and it's not giving me much of a break...and I'm pretty depressed about it as I had talked myself into it not being MS for 15 years and actually thought it was gone for good. Plus the leg weakness is really frightening....none of my symptoms seemed to have gone after my mobility before. All of these symptoms wax and wane, but since this stuff and started up, it hasn't gone away, so it's a flare of "something". Two other symptoms which actually started months ago, which I had been successfully ignoring - a numb patch to the right of my spine, just below the bra strap - not entirely numb, just a weird feeling that I notice and also really loud tinnitus that sounds like hissing pipes when water is running. I blew both of these latter two things off, but they have been going on a few mos., and now I am suspicious they're related.

    Anyway, I guess I don't really have any questions - I just wanted to say hi for now....and does anyone know what's become of xo++ (Mark)?

    Cheers all,

    hootswithowls

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  3. #2
    Distinguished Community Member agate's Avatar
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    Welcome back, hootswithowls!

    I remember you but unfortunately not much more than your name.

    I'm sorry you've been hit with new symptoms lately. It sounds as if you're thinking about returning to the medical professionals for more investigation. I hope you'll see a doctor about your leg weakness and other concerns.

    xo++ (Mark) hasn't been around in quite a while. I tried to post a link to his posts but for some reason it worked briefly, then didn't. You can search his user name on the Memberlist (xo++) and get to his posts in that way if you like.

    Thanks for stopping by!

    EDITED TO ADD: StillstANNding has also posted a link to one of Mark's posts (thanks, stillstANNding!).

    I think it's interesting to read over old posts sometimes.
    Last edited by agate; 06-01-2019 at 07:48 AM. Reason: changing bad link
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  5. #3
    Distinguished Community Member Sunshine's Avatar
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    Welcome Home HWO! I think I recall your name :)

    So sorry you are flaring up again. MRIs have improved. Be sure to get the 3T not the 2T. Be sure to rule out Pernicious Anemia also and any other mimicked.

    I know that feeling of unease when you think youre ok and then symptoms flare up...

    So much has improved since 20 years ago, and so much has not improved re MS dx and MS treatments.

    Stay a while, and we will help you with our accumulated wisdom and support. I was here then, but under a diff username...

    I miss XO++ and hope all is well with him...

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  7. #4
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    Welcome back, Hoots w Owls.

    I’m sorry that you are having troubling symptoms.

    Yes, modern MRI’s are now up to T7 machines and show incredible detail.

    XO married a neurologist and lives on a farm last I remember.

    Best to you, keep posting,
    ANN
    There comes a time when silence is betrayal.- MLK

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  9. #5

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    Thanks, All.....I definitely remember screen names like agate and Howie. I also remember Grassman (keep on keeping on - still remember his phrase - and he was such a funny guy, despite his struggles...RIP, Grassman). Hope Catdancer is doing ok - I remember her, as well.

    That is really cool that XO married a neurologist!! Hope he's doing well....I remember he was on Copaxone....wonder if he's still taking that.

    I faded away from this forum and my thoughts of MS when my symptoms faded, and I was also shaken by my co-working ending up with PML (patient #3 to get it - in late 2004, I think it was?). He was in the Avonex/Tysabri trial. Then, I was also being told "not MS, not MS" by several neuros. Back then, my symptoms were occasional scary "waves" of dizziness with residual overall light-headedness and also discomfort due to the loss of sensation here and there (arms, legs, faced - moved around) which was never entire numbness - sometimes complete numbness but did not stick and was often just in the morning - arm asleep or whatever. In retrospect, I can't blame the neuros - no clinical signs, negative MRIs, what more was there to do? Yeah, lumbar puncture, but that was more invasive and when that was finally suggested (begrudgingly by an MS specialist who did not think it was MS), I hesitated....and that was around when everything faded away - or at least, it hadn't worsened and remained sensory.

    I currently belong to an HMO, so I'm at their mercy as to what type of MRI machine they have....hopefully, it will be a T3. I know it's not a donut machine, at least. I have no issues with MRI claustrophobia....I pretty much napped in there in the past....

    So, right now, I'm going over and over what I did 15 years ago to make this stuff go away, why it went away, etc....and I don't know, but I lost a lot of weight shortly after the symptoms seem to fade away, and I was exercising very regularly in this timeframe (mostly treadmill at gym during the week and hiking on weekends). I also took Vitamin D3 (only 1000 IU), B12 and a multi-vitamin. The symptoms seemed to fade before the weight loss, so I'm not really sure if weight loss and exercise kept them at bay or what. In terms of diet, at the time, I was heavily into cutting saturated fat - I was basically doing that and just watching calories. I wasn't super strict about dairy or gluten or any of that at the time - other than always going nonfat with dairy - I wasn't really thinking about these neurological symptoms as those had faded. Mostly, I was focused on losing weight and improving my physical condition. I wanted to hike to the top of Half Dome (Yosemite) - that was my goal - and yes, I did it in 2008 - and again in 2010. So, I've tried to remain physically active, but it the last few years, I had a crisis with my elderly parents, which disrupted all of my exercise/eating efforts. I put on weight gradually - maybe more over the last couple of years (not all that I originally lost, maybe 40% of it, though), which I'm trying to lose now. I'm trying to go to the gym, but these symptoms are interfering. But I'm still pushing and have lost weight. I'm also increasing Vit D3 to 5000 IUs per day - I had slacked on Vit D3 and all supplements and wasn't even taking it regularly.....since this flare started, I've been disciplined about them, though.

    The leg weakness really has me freaked out....I think I would be less worried if it were just more of the same waves of dizziness and numbness as I remember all this stuff far too well....although those things are now more intense than they were. The leg weakness is new - and isn't an overall weakness but more of a knee buckling feeling like I can't keep standing. What's weird (and fortunate) is that none of this stuff sticks for super long. I will sometimes have hours or even just minutes where I feel like my legs may buckle, so sometimes I'm stressed out in the grocery store, for example, but then there are other times - maybe even the next day, where I'm ok in that respect - I'm not symptom free since this stuff has started, but the leg weakness is better. All this stuff waxes and wanes. I did tell the neurologist about this, but it's not like I could not walk, so he didn't say too much but rather just ordered the MRI. He's not an MS specialist - just a general neurologist, so I think that based on my symptoms and history, he is just following protocol for now and ordering the MRI....which I have to wait 2 weeks for because it's a 2 hour test covering brain, c-spine, and t-spine.

    Anyway, for now, I am trying to take control of what I can control - supplements, eating, exercise.....I am looking at diets - Wahls, McDougall, etc. It seems that many are favoring Paleo and Wahls these days. I see less discussion of Swank and McDougall.

    Anyway, thanks for your replies....I will keep you all posted.

    Cheers,

    hootswithowls


  10. #6
    Distinguished Community Member Sunshine's Avatar
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    I am so glad you laid this out for us. We have all been there, the anxiety of not knowing.
    Good on you for controlling wellness as much as you can.
    I donít think the research supports the paleo or the Wahls diet,
    But, You gotta do what you think is right for you.

    Are you allowed to insist on an MS specialist afte the MRI?
    Can you afford to switch to a PPO?

    Please keep us posted ... and keep coming here for support as well as info.

    Do you have strategies to prevent falling when the leg goes wonky?

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  12. #7
    Distinguished Community Member Howie's Avatar
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    Cool

    I have to admit, I hadn't posted before because I didn't remember your name. But not to worry, I don't remember my own name sometimes.

    So pull up a chair, and join us. Welcome back!
    Evolution spans the Universe.


  13. #8

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    Hi All, I just called, and it seems the MRI machine is a 1.5 Tesla. So....guess I'm stuck with that for now....at least, I'll start with that. On the positive side, they had an opening for an appt. on Saturday, June 8th, so, at least I'll get it done almost a week sooner.

    Yeah, regarding diet, I figure eating healthy, exercising, and maintaining a normal BMI can only help all aspects of life.

    Cheers,

    hootswithowls

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  15. #9
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    HWH, sounds to me like you are doing all that you can for yourself, at least until a diagnosis is made. You are taking things into your own hands as far as diet and exercise are concerned, and also the supplements. That is about all you can do until a Neuro is able to determine your problem. Just hope they can determine it soon so that you will not be stressed out. It may or may not be MS. My own symptoms waxed and waned for years and sometimes went away to the point of me forgetting them - until they didn't go away. Even after they did not dissolve on their own it took more years to get a diagnosis because no one thought of MS. I had "aged out" of it. However, this was back when they knew even less than they do now.

    I do remember your name. I was on here, but not posting a lot because I was working at the time and doing fairly well with my MS. I was posting under another name. The forum went down and when it came back up I couldn't get on under that name.

    Regarding xoxo - Mark. As Ann stated he did marry a Neurologist from Germany. He came on and posted to us one time and told us. He said it had nothing to do with his MS and he met her under other circumstances. He was, at that time, living on one of the nicer S.C. islands. It was not Hilton Head and he didn't say which one it was, just that where they bought a house had a very large oak tree out front. He had stopped Copaxone because he said that he and his wife had decided that his MS was stable and they were not expecting any further problems with it. I wish he would come back and let us know how he is doing now. All this was several years ago. He was so good about helping everyone, I know he did me when I was first diagnosed and came on this forum. We all miss him and hope that he is doing well.

    I hope you will not only keep us informed about your situation, but that you will just come on and chat with us when you can. Catdancer has been a little under the weather, but she is still here. We miss her when she can't get on the forum.

    Good luck with your upcoming MRIs.
    Virginia

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  17. #10
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    Here’s the post from XO++ with his update:

    http://www.braintalkcommunities.org/...-a-former-BTer

    ANN
    There comes a time when silence is betrayal.- MLK

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