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    Hey all!

    Hey all, thanks for reading, and nice to meet you all! I've come to these forums because my doctor believes I have MS, and I'm currently waiting until after Easter to see an MS neuro specialist, so I'm halfway to a diagnosis. In my heart of hearts I hope it's not MS, but reading about everyone's strength on here gives me hope that I can get through it too if it is!

    I guess it all started for me when I was diagnosed with Interstitial Cystitis. It took months to diagnose that, lots of doctors didn't believe in me, and thought it was all in my head. It's been pretty down hill since then. I then developed cognitive difficulties - I had and still have balance issues (walking up stairs is terrifying to me!), and memory issues. I swear, I spend half of my time walking around the house trying to find things I've put down 5 minutes earlier!

    Then came the bowel issues, the pain and bloating, which they thought was from my severe constipation. So IBS it was...

    Then I got Uveitis, and lost some of my vision in my left eye. My eyes still play up, I get pain and spots. Sometimes it's harder to see.

    then came summer, and the weird sensations of tingling all over my body as well as severe fatigue when I get overheated.

    Now it seems like everything has gone down hill drastically since then. 5 hour naps a day along with regular sleep at night, fatigue even after taking a shower which is hilarious to think about, but also makes me want to cry.

    Now on a daily basis I'm struggling with fatigue, struggling with leg pain, and pains in my hands, tingling in various parts of my body, and chest pain which scares me a lot. I always joke with my family that if I had a heart attack I wouldn't know! Pains just everywhere in my body. I also get what I call hot spots on my body where parts on my legs or arms will go really hot. Yesterday was quite scary. I've had numbness and pins and needles before, but yesterday all the sudden my whole back and half my bum went numb and tingly for a few hours. I cried. I didn't expect it, and I've been in my nice little denial bubble about having MS since my doctor told me she thought I had it 2 months ago. So now I'm starting to think she's right, and I'm terrified.

    I've come on these forums because I want to learn about this condition, and also to be supported and give support. It's quite scary, as symptoms come and go, and they're so out of the blue and weird, it's hard to keep track and also not go insane. I've had to take a few months break from work to deal with this, so hopefully the neuro can give me answers and treatment soon!! As I write this, my forehead is tingling. Who bloody knows lol. I'd love to hear some feedback on my story, those who have experienced similar issues, and how they've dealt with them.

    Anyway, it will be lovely to meet you all eventually, and share the support!

    #2
    Hi and welcome!
    He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
    Anonymous

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      #3
      Hello lilymilly and welcome to MSWorld!
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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        #4
        Hi LillyMilly!

        I hope your neurologist appointment goes well! I can relate to some of the symptoms you're describing :-/

        The numb bum jumped out at me... I got diagnosed end of last year, and I remember telling the neurologist about having a numb bum (and leg) for a bit, it was just so funny going to the toilet with one half feeling like its up on a pillow :-) Anyway, my neurologist said, out of all the symptoms, that was the one that was definitely MS and he couldn't think of any other explanation for... But maybe its different than your episode, I'd had that for a couple of weeks - I think its not considered an actual relapse if it doesn't persist for a bit. (I'm not an expert yet! only diagnosed 5 months ago with no idea it was on the cards, I just thought weird things kept happening because I was unlucky :-) )

        Best of luck for the neurology appointment!

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          #5
          You'll have a lot more info after seeing the neurologist. You didn't mention if any type of testing had been done yet. I'd expect the next steps will be getting an MRI, and likely a good amount of bloodworm done.

          Hang in there. People deal with being diagnosed in different ways. For me, I wanted to know ASAP so that I could start trying to treat / (prevent progression) ASAP.


          Thanks for posting and welcome to the boards.
          RRMS Dx: 3/23/15
          (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
          Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

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            #6
            Welcome and good luck on your visit after Easter.

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              #7
              Hi Lilymilly hope your DX and your appointment go well, its hard to know whats happening with your body when there are so many different symptoms and everybody has different ones good luck Craig

              Comment


                #8
                WELCOME MS WORLD LILLYMILLY!!!!! it is nice to meet you, but I am sorry it has to be because of MS.
                It is only common to have many different feelings, and different people will experience different feelings. DENILE is fairly common.
                These symptoms you have described are fairly common in MS, but they are also common to other diseases. I'm sure you will learn more as time goes on. I wish you the best of luck at your doctor appointment after Easter.
                Any time you have any questions, feel free to ask them here. That is why we exist. Good luck!
                hunterd/HuntOP/Dave
                volunteer
                MS World
                hunterd@msworld.org
                PPMS DX 2001

                "ADAPT AND OVERCOME" - MY COUSIN

                Comment


                  #9
                  Thank you for the kind words and greetings guys! Nice to meet you all!

                  To answer some of your questions, I have had a LOT of blood tests done. Every test you can do, they've done on me all with no answers unfortunately. The only one they haven't done is looked inside my brain, so my doc did say I will need to get an MRI done when I see the specialist (and probably a whole lot more blood tests too. Feels as though I'm a pin cushion lately!).

                  They've ruled out a lot of things, which is why I think they're leaning towards MS, as my symptoms keep building in strange ways, disappearing, coming back. Can't catch a break! I guess the hardest one for me at the moment is the pains in my hands, arms, feet and legs. They feel like muscle or nerve pains or something, and they're aching like crazy! Then they'll switch to tingling! I've been put on Prednisolone until I see the specialist (which is now only a week away - woohoo!). Has anyone else tried Prednisolone? My doc was pretty adamant it would help, but it hasn't to be honest with you, which is a bit disappointing.

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