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    confused

    Hi, I'm new here. I've been looking around and reading other posts now and again for a couple of weeks now and thought it's only polite to join in. I haven't been diagnosed with anything yet but I feel MS is the most obvious condition for my symptoms.

    It all started for me almost 2 years ago when I developed a tremor in my hands literally overnight. At the time this was my only symptom. I was refered to a neuro who said it's 'benign essential tremor'. I started taking propanalol (which sometimes helped) and thought nothing more of it. It was more of an embarrasment than a concern for me.

    six months later I strted to get dizzy spells and vertigo which would last for weeks at a time. I got medication for this but did not connect it to the tremor. The dizziness continiued and seemed to get worse as time went on, then about 6 months ago, again overnight, I started getting pins and needles, numb feelings and serious stiff/cramp in my leg and arm.

    I went to my GP again who referred me to another neuro and told me she thought it might be MS but that I shouldn't worry. I obviously went into total panic and my symptoms got worse.

    I had an MRI of my brain and spine which showed no lesions, just a cyst and scoliosis of the spine. Apparently neither of these are significant enough to cause my symptoms however the letter I received said they could be anxiety related. I was certainly anxious when I met with the neuro but who wouldn't be when their body seems to have been 'taken over'.

    I see the neuro again on 24th December. It's really hard to describe the symptoms I'm feeling and I'm scared they'll blame this on stress or something, which I've read happens often.

    Any advise would be appreciated, it's really nice to read these posts and know you're not alone in this!

    Ray Ray

    #2
    Hi Ray Ray.

    From my limited experience and knowledge, it certainly sounds like MS is a definite candidate. BUT - and I know this is far easier said than done - try not to panic.

    There are many other conditions and diseases that could, theoretically, explain your symptoms, so try not to jump the gun. A huge upside is that your doctors seem to be taking you seriously and to be actively trying to find an accurate diagnosis. In that you are luckier than many, so try to take comfort in that at least.

    Yes, I agree that all too often the symptoms are ignored or written off to "easy" causes like stress, often for years on end. I was in fact, one of "those" people, so can definitely relate to your fears. But again, you are already much further along than a lot of us ever got in early stages when our symptoms first started showing up.

    And don't forget, it COULD be any number of other things.

    About the only real advice I can offer is that you not stop looking for answers until you are completely satisfied that whatever the problem, it is correctly identified and addressed. Do NOT give up if none of your upcoming tests and appointments offer tangible results.

    Start keeping a record - now - of all your symptoms and the circumstances around them. By circumstances, I mean when a new symptom crops up or an old one resurfaces, think about what is going in your life at that time.

    For example, when recording things, ask yourself the following types of questions?
    • Are, or were you recently, under any kind of unusual excessive stress?

    • Did you eat and/or do something not normally in your routine?

    • Are you or have you recently been sick with anything, even a simple cold? If so, what did you experience while ill, how long did it last, and how did you treat it? How long was it before you felt well again. If still in the thick of being "normal" sick, then think about what you feel can reasonably be attributed to that, and what cannot. Be sure to note the difference between them.

    • Describe, as accurately and clearly as you can, exactly what symptoms you are experiencing. If you can, especially based on past experience, rate each one on a scale of 1 to 10 - 1 being the mildest and 1- the the worst.

    • If the severity changes one or more times in a 24 hour period, note when, how much and in which direction - up or down in severity. If something lasts for several days, weeks or months, keep a very careful record.

    • Conversely, has lack of sleep not symptom related, exacerbated and/or triggered anything?


    [*]Perhaps create a simple dated daily log or chart where you can tick off things like which symptom(s) you experience that day, how severe each one was using the 1 to 10 scale for morning, afternoon and evening. And if they affected your ability to get a good night's sleep.

    These kinds of details will help you track patterns and can be useful when consulting anyone now or future about your health. Keep doing this even if you don't find answers right away. Trust me, if I'd done this faithfully, I may well have gotten help a whole lot sooner.

    I don't know where you are or what kind of medical insurance, if any, that you have. I understand that if you have to pay cash for doctors and tests, or are limited due to your coverage, it could seriously impede your search for answers. But in such cases, keeping track of everything would prove even more useful. That way you don't have to rely on you memory when are able to next see someone. No matter how good your memory is, you will forget what could be key facts of your own history if enough time passes.

    Most importantly, don't give up!

    Know that you've come to the right place for support, information and advice.

    Good luck. I hope you get answers sooner rather than later.

    Comment


      #3
      Thank you

      Hi there

      Thank you for your reply. You're right in that panic does not help! I'm feeling a lot more calm since doing some research on the internet (and finding this site). It's strangely a comfort to know that other people are going through similar things, although it's also very sad.

      I have never really been unwell before this and to be honest until July (when difficulty with legs and arm started) it still didn't occur to me that the tremor and dizziness could be a sign of any illness.

      I'm very lucky as we have NHS here so I don't have to pay for treatment or worry about insurance. I really do feel for all those people who are having issues with medical insurance and can't imagine how much extra stress, emotionaly and financially, this must cause.

      I am a single parent and I have been suffering with fatigue a lot and do worry about keeping up with my work and financial commitments. I'm lucky that my employer is very understanding and very good to me.

      I origionally started to keep notes on things happening however I've not really kept up with this but will try again following your advice. I did ask my neuro if it could still be MS after my negative scan and he said it's probably not but hasn't really offered an alternative explanation (except anxiety which was a result rather than cause of my situation). It's frustrating to have all these things happening and no explanation.

      I've had every blood test that must exist and even a Lyme disease test which was also negative. On a more positive note I have signed myself up for physio therapy and had my first session on Friday, they are confident that I will see some improvement in moving my right leg if I keep up the excercises!

      Can I ask you how it started for you and how long you waited for a diagnosis?

      Thanks so much for your words of encouragement and advice

      Ray

      Comment


        #4
        WELCOME RAY RAY!!!!!! I hope you can quickly get some answers! I do not think I can give you any better advice than you have already gotten. I will reiterate the fact that you need to quit worrying. Good luck in getting some answers (going to the doctor on December 24 though?)
        hunterd/HuntOP/Dave
        volunteer
        MS World
        hunterd@msworld.org
        PPMS DX 2001

        "ADAPT AND OVERCOME" - MY COUSIN

        Comment


          #5
          Hi Ray Ray:

          MS is so different for everyone as you will find out. It is hard to compare your experience to someone else's.

          I will tell you how I was diagnosed and how long it took.

          Mine first started with trigeminal neuralgia. I had 4 root canals trying to figure out what was wrong, why I was having so much tooth pain when they finally said it is neurological. This was over the period of about a year.

          During this time I had some tripping with my left foot, and a sock-like feeling over that leg, like something was too tight on that leg. Then it was numb from the calf down.

          I was young and the neurologist said "you know maybe you should be tested for MS, it is unusual for someone your age to have TN" I was like "NO", I don't have MS". I was not about that, I had too much to do.

          So about 3 years later I began to have numbness in my face where my TN was and in my arm on the left side. I eventually developed slurring of speech and difficulty swallowing, so I went in to see the neurologist again. Had an MRI. The MRI was a 1.5 T and showed 2 lesions. Oh, I had also had a couple of episodes of blindness in my left eye which were attributed to migraines a few years back too.

          The MRI however said that the lesions were consistent with MS. So this neurologist did a spinal tap which was positive for 5 o-bands. He than sent me to an MS specialist. They did another MRI of my brain and spine in a 3T machine. I had 8 brain lesions including 3 brainstem lesions that did not show up on the 1.5 T, I had 3 spinal lesions at the time of diagnosis. I also had bilateral optic nerve atrophy from having several episodes of optic neuritis.

          So it took me a while, but that was my fault.

          I have gone through 3 DMDs, and have collected many more lesions. Like I said though, everyone's MS is different.

          With a negative MRI, it may take a spinal tap and several other tests to get a diagnosis. Or, it may just take some time. Whatever it is, we are here for you. So welcome.
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            Hello

            Thank you both for your warm welcome and kind words. Yes, it's unlucky that my appoinment is on 24th! At least it will be another step in the right direction though...

            I can relate to a lot of what you're saying, I have also been suffering with facial pain, tingling and twitching and regularly feel like I have a tight sock on! I was so pleased to read about your 'sock feeling' as I've not read anything before about that feeling despite checking it out on the internet. some things sound so wierd that it's difficult to tell your Dr!

            Thank you so much for taking the time to tell me your story, It's a comfort to know other people have been/still are in a similar situation.

            Your positivity is an inspiration to me!

            Ray

            Comment


              #7
              Hello again, Ray Ray.

              My story's long and would just depress you. Let's just say it took a really long time and a very alert, helpful optometrist who finally got the ball rolling earlier this year.

              No matter the results of your upcoming appointment, just make sure you don't give up. It's sometimes easier than fighting "the system" but in the end the only who will lose is you, so keep at it please. You know your own body better than anyone else so if you say something is wrong, it is!

              More Hugs!

              Comment


                #8
                Hi again,

                Thank you, I will certainly keep on until they figure this out. I'm pleased you finally got a diagnosis, can't imagine how hard it must have been to go so long wondering! Until recently I thought diagnosis of any medical problem was just a quick trip t the doc's. How wrong I was!!

                Ray

                Comment


                  #9
                  Thank you, Ray.

                  First, on the lighter side....

                  Laughs. Yes, wouldn't it be nice if we lived in a Star Trek society where they could give us a quick painless short to cure anything. (Did you ever notice the "hypo-spray" shots in Star Trek never seem to cause even a flinch , and that whatever is supposed to be in it cures absolutely everything? Unless of course you happen to be an ensign...no matter what Star Trek series you think about, an ensign almost always seems to get killed (except for Harry Kim on Voyager, he just never got promoted during the show's whole 7 year run!), so I don't suppose their magic hypo-spray does much good for junior officers. )

                  But now back to boring old reality...

                  I wasn't exactly pleased, at first, to get the diagnosis, but now that I've calmed down a bit I'm actually kind of relieved to have all my complaints finally validated. After decades of everyone except my parents, husband and a couple of very close friends, thinking I couldn't possibly have so many issues when I "looked" just fine, I had reached a point when I started to believed the general consensus...that I was just plain nuts!

                  Now that I finally have the answer, and have been getting so much emotional support and helpful information, from the people here, at a Canadian online MS site, and through my local MS Society branch office, I'm feeling much, much better about all this. Still scared, still have a ton to learn, and still worried about the future, but pleased to finally know and at least have some idea of where to go from here!

                  I very much hope that you and all the others still in limbo find out exactly what your own particular problem(s) are soon, be it MS or something else. Living without answers, in my personal opinion, is often harder than being given bad news when you finally do get the answers. At least then you can start dealing with whatever the issue is, even if all you can actually do is choose to accept or deny it! Bad choices are better than no choices.

                  Take care and keep us posted on your progress, or lack thereof, of your search.

                  Comment


                    #10
                    Had a good chuckle at your post! Loving the Star Treck analogy I must say I think I prefer the lighter side to 'boring old reality'!

                    Thanks for telling me a bit about your journey, I hope you continue to feel more positive and 'in control' now that you have some answers. I hope you'll keep in touch and let me know how things are going with you....

                    Also it's great that you're using your experience to support newbies like myself, as I'm sure you know it's a tremendous help to feel somebody understands!

                    I will keep you posted on my progress/lack of.... lol

                    Comment

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