Anyone have MS or know someone living with it?

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  • LizardLizard So CalPosts: 11,915
    My older sister was diagnosed about 8 years ago... she has flareups... and like you, has not been definitively diagnosed.
    All the best to you, LedVed
    Is it over yet? #ITMFA
  • rgambs said:
    Well, I think we are getting very close to a diagnosis. A couple of weeks ago I had a VEP done at my eye doctor which showed a damaged optic nerve in one eye. The eye doctor said it is a big red flag to a neurologist for MS. Today I had a brain MRI done and I think that's where the answers will lie. It's an odd feeling to be rooting for MS, but it's pretty much the only option on the table that isn't horrible. I can handle MS if I'm given treatment and a plan. My biggest fear is being told again that they aren't sure what's going on. They can't say it's all in my head anymore after the VEP results. It shows something is clearly wrong. Just not sure what it is. 
    Eye doctor for the win! 
    My wife is an Optometrist.

    I really hope your physicians get on the ball and get you some relief soon.  Hang in there!
    Ha! Good for your wife! I used to want to be an eye doctor. The eye doctor who told me of my VEP results actually bought his business from my grandpa, who taught him the business. So if I have to hear it from someone, who better than someone my grandpa groomed? Does your wife offer a VEP test? It used to be super expensive for offices, but it's apparently dropped in reverent years. Basically the amplitude in my left eye is about 40% of what the right eye is. The info that the eye sees isn't reaching the brain because the left optic nerve is damaged. I think I'm remembering that right, as to what is happening. 

    Thank you all for the support and sharing of loved ones facing MS. It's nice to have an established support system in place. I hope someday any sort of info I have can help you guys out like your words have helped me. 
  • ledveddermanledvedderman Posts: 7,729
    Big week ahead of me. Friday is the day I've been dreading, yet begging to have happen, for 6 months now- a spinal tap. Good god. I cannot explain how nervous I am for that. 
    Next week I'm going up to Mayo Clinic in Minnesota to be looked over. They're the best neurological department in the country. 
    So, I'm not certain that MS will be the diagnosis. If it is, it's super early and aggressive. My spine, neck, and brain show no leisons. My smoking gun is going to come down to a couple of things that certainly are happening and proven on tests. The eye test that shows severe deterioration on the optic nerve from my left eye to the brain. The MRI shows no damage to the outside of the optic nerve, so this is where we get the "early and aggressive" belief. That eye test is used to catch things early on. Next, while I have no leisons on the brain, my white matter has significantly increased over the last two years. So, obviously something is going on in a negative way with the nervous system. About 4 years ago, I went to Mayo for an unrelated reason and after a MRI then, the doctor pointed out that I had more white matter than what someone my age would normally have. I didn't hear this, my mom did. But, no doctor followed up on it and my mom assumed I heard it. Needless to say when I told her a couple of months ago I'd never heard or talked to any doctor about white matter, she was shocked. God damnit. I feel like everyone involved (including me and my family) dropped the ball. What if we'd caught whatever this is super early? But, I can't think like that. It's not healthy. But I'm close to an answer. Very close. 
  • cutzcutz Posts: 8,119
    GOOD LUCK, on Friday.^^^^^
  • hauntingfamiliarhauntingfamiliar Wilmington, NCPosts: 9,790
    ^ Don't beat yourself up about the what ifs!! Yes it is frustrating, but you can do nothing about that now. You can move forward like you have been and stay on the doctors and specialists until they find out exactly what is going on with you. You seem to be doing everything you can to get a diagnosis. I wish the very best to you and I really hope you get some answers soon. Then you can figure out your treatment. Positive waves going out to you. Hang in there and vent here anytime you need to!!!!!
  • hedonisthedonist standing on the edge of foreverPosts: 19,699
    ^ Don't beat yourself up about the what ifs!! Yes it is frustrating, but you can do nothing about that now. You can move forward like you have been and stay on the doctors and specialists until they find out exactly what is going on with you. You seem to be doing everything you can to get a diagnosis. I wish the very best to you and I really hope you get some answers soon. Then you can figure out your treatment. Positive waves going out to you. Hang in there and vent here anytime you need to!!!!!
    I echo what this smart woman says.
  • HughFreakingDillonHughFreakingDillon WinnipegPosts: 18,126
    good vibes from Winnipeg vedderman. 
  • oftenreadingoftenreading Victoria, BCPosts: 10,131
    Big week ahead of me. Friday is the day I've been dreading, yet begging to have happen, for 6 months now- a spinal tap. Good god. I cannot explain how nervous I am for that. 
    Next week I'm going up to Mayo Clinic in Minnesota to be looked over. They're the best neurological department in the country. 
    So, I'm not certain that MS will be the diagnosis. If it is, it's super early and aggressive. My spine, neck, and brain show no leisons. My smoking gun is going to come down to a couple of things that certainly are happening and proven on tests. The eye test that shows severe deterioration on the optic nerve from my left eye to the brain. The MRI shows no damage to the outside of the optic nerve, so this is where we get the "early and aggressive" belief. That eye test is used to catch things early on. Next, while I have no leisons on the brain, my white matter has significantly increased over the last two years. So, obviously something is going on in a negative way with the nervous system. About 4 years ago, I went to Mayo for an unrelated reason and after a MRI then, the doctor pointed out that I had more white matter than what someone my age would normally have. I didn't hear this, my mom did. But, no doctor followed up on it and my mom assumed I heard it. Needless to say when I told her a couple of months ago I'd never heard or talked to any doctor about white matter, she was shocked. God damnit. I feel like everyone involved (including me and my family) dropped the ball. What if we'd caught whatever this is super early? But, I can't think like that. It's not healthy. But I'm close to an answer. Very close. 
    Sending you positive vibes today as you have that spinal tap. I hope it brings you some answers and a way forward. 
    my small self... like a book amongst the many on a shelf
  • ledveddermanledvedderman Posts: 7,729
    ^ Thanks everybody. I'm nervous as hell, but it will be over before long now. 
  • jeffbrjeffbr SeattlePosts: 6,547
    Positive thoughts for a clearer diagnosis today. I hope, regardless of the diagnosis, that you will be given a good course of treatment. Most importantly I hope that the burden and stress of uncertainty starts disappearing as you get a clearer picture of the underlying issues. Stay strong!
    "I'll use the magic word - let's just shut the fuck up, please." EV, 04/13/08
  • My brother in law has MS. Has been taking a weekly injection to minimize symptoms for years now. He does really pretty well. Good luck in your testing today.
    And the sun it may be shining . . . but there's an ocean in my eyes
  • ledveddermanledvedderman Posts: 7,729
    Holy fuck. I'm not going to sugar coat if. Spinal taps, when not in movie form, are not fun. 
  • what dreamswhat dreams Posts: 1,037
    Several friends have been diagnosed. They continue to live regular lives with accommodations, especially diet, exercise, and rest. Talk to your doctor and research the autoimmune protocol diet. Food is medicine. Off the top of my head, vinegar and night shade vegetables are triggers.
  • After a long process, I got diagnosed with White Matter Disease last week. Usually something that happens in the elderly...but here I am. Well...shit. 
  • After a long process, I got diagnosed with White Matter Disease last week. Usually something that happens in the elderly...but here I am. Well...shit. 
    I’m sorry. So not MS. They found that is what you’re suffering from? 
  • oftenreadingoftenreading Victoria, BCPosts: 10,131
    After a long process, I got diagnosed with White Matter Disease last week. Usually something that happens in the elderly...but here I am. Well...shit. 
    I’m so sorry to hear that, ledvedderman. That sounds like a hugely tough thing to deal with, made worse by your atypical presentation. Best of luck to you. 
    my small self... like a book amongst the many on a shelf
  • hedonisthedonist standing on the edge of foreverPosts: 19,699
    Damn.  I wish you the very best and hope that your not being older plays even a small positive role in this.
  • After a long process, I got diagnosed with White Matter Disease last week. Usually something that happens in the elderly...but here I am. Well...shit. 
    I’m sorry. So not MS. They found that is what you’re suffering from? 
    They actually expect me to have MS eventually still. So MS is white matter deterioration in very specific parts of the brain- where White Matter Disease is pretty much everywhere in the brain. 
    I’m  pretty young for this, for sure. Likely by half. I’m only 36. 65+ seems to be where it usually kicks in. I’ve had learning, mood, and cognitive difficulties for a long time but assumed it was a totally unrelated thing to the physical neurological symptoms I’ve had for about three years now. 
  • giventofly69giventofly69 VancouverPosts: 746
    I saw this thread and had to read through it ... cuz I was just diagnosed with MS on Sept 27. RRMS. I'm still processing it. And trying to decide on treatment.
    Sorry to hear about your diagnosis ledved. Hope you've got some good doctors around you, helping you understand the implications and the options. Sending good thoughts.
    "Your light's reflected now, reflected from afar. We were but stones, your light made us stars."
  • Meltdown99Meltdown99 None Of Your Business...Posts: 6,766
    edited December 2018
    Sorry to hear of everyone's health issues.  Thought to everyone.  Having neurological issues are scary. I also agree, do not google symptoms.  You can go from healthy to dying in 6 clicks...
    Post edited by Meltdown99 on
  • hauntingfamiliarhauntingfamiliar Wilmington, NCPosts: 9,790
    We are here for you @ledvedderman and @giventofly69. Postive thoughts, vibes and so much positive energy sent to both of you!!!! 
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