I have been diagnosed for near 30 years now luckily on a slow down hill track but do find it hard when doctors cannot find an answer to stroke or MS as all of my left side went a year after being diagnosed and never got a answer then about 10 days ago my right arm went like jelly and my speech went docs said MS then stroke then back to MS. Live is confusing enough sometimes with MS without the uncertainty just needed to get that of my chest as you probably realise I have zero patience as far as records go can not think of a good one at moment but the most annoying one for me at time of diagnosis was No1 at the time and every where you went it was being played (don't worry be happy)

12 Replies

  • NHSNeedhelp, welcome you are wonderful chat room here at the MSAA, from Fancy1959. You have found a safe place to come work through your confusion. You can ask questions, voice concerns, and talk to people who truly understand in a very safe, friendly, and positive environment. This chat room has some of the kindest, most compassionate, and caring people I have ever met. Together with over 1,600 other people we might offer experiences or hints that will help you to figure out your dilemma. If nothing else we can give you ideas that you can take to your doctors and arm yourselves and be ready for the appointment to get all the information you need and seek.

    You can come anytime you need to have someone to talk to and a shoulder to lean on or vent your frustration at. We all need to do that at some point. And we are very good listeners with compassionate ears that you can talk to. I too would be concerned if the word stroke was introduced because as we all know a stroke is not something you ever want to take lightly. And when your doctor's diagnosis goes back and forth I too would be concerned. That's when a second opinion would come in handy for me. Have you thought about going to a different doctor and to get their take on your situation? It might be worthwhile and help to ease your mind if nothing else.

    We are glad you have joined our extended family. Please keep us in the loop as far as or diagnosis goes. We are concerned and if I can do anything let me know please. Remember together we are stronger!

  • Hi fancy 1959 they are sending me for a brain scan and want me to where a heart monitor for a short time as my blood pressure was 188 plus look more into my circulation and they have put me on clopidogrel zentiva 75 mg one a day and taken me of my trimethoprim 100mg one a day still popping baclofen when I need to thanks for your help and nice to chat mags 52

  • Hi NHSNeedhelp Welcome to the roller coaster ride of MS.😑 It stinks. And it can be very hard to DX. Hopefully after your MRI they will have some answers for you.☺ As Fancy1959 said, if you still feel like your Drs are playing the blame game, it might be time for a second opinion. Make sure you keep a journal of all your symptoms also!

    Welcome again to our wonderful MSAA Community ☺

    Jes 🌠

    ~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • @jesmcd2 thanks I know what you mean been on the roller coaster 29 years just soom time it would be nice if we all got a day off thanks for tip too

  • Had a word with the MS nurse to day as just after my last episode two weeks ago a couple of days later my toes got really cold and went into spazem when I put them up to the extent that I had to get out of bed and could not sleep took two baclofen but did not help have heard of this before but not experienced it never realised was so painful Ms nurse says will put me on new tablets but forgot name should get them tomorrow let you know how it goes mags 2

  • NHSNeedhelp, I'm happy to hear you spoke with the MS nurse. It appears you are going to get some relief with the new meds. I certainly hope and pray you do! 💕

  • @tutu Thanks will let you know if it works ttfn

  • Sry to hear about your pain NHSNeedhelp let me know what they give you, as I'm allergic to Baclafin. And I'm always looking for alternatives.😁

    Hope you feel better soon ☺

    Jes 🌠

  • @Jesmcd2 hi about the blocks off ice on my feet tried naproxen 250mg that I got from doc about 6 month ago as baclofen was not working it seems to have worked so will stick to them for time being the MS nurse put me on gabopentin teva 100mg not tried it hope this is helpful to you mags 2 ttfn

  • Thank you for the update NHSNeedhelp ☺ l hope it works for you!! I have been on that and Lyrica and neither had much effect. But Alot of people say it's great! Let me know if it continues to work☺

    Jes 🌠

  • @Jesmcd I will do and hopefully you will find something that helps mags 2

  • Jesmcd2 went for scan on legs today says all OK just need to get back to doing my exercise on legs I will let you know when Meds come ttfn mags 52

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