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Never been good at limbo and need some help. Here's my story.

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    #16
    Hi Hassl3,

    Have you been to an Ophthalmologist about your vision? If not I would suggest doing so. Floaters are typically normal and many people experience them. It is always possible the other vision problems could be due to needing vision correction (glasses, contacts).

    Cracking joints -gotten pretty A lot of my joints feel so stiff then I can pretty much crack any joint in my body. My worse parts are my right arm( shoulder, elbow, wrist and all joints in my fingers).
    For many people cracking their joints just feels better and is not indicative of MS. My daughter cracks her joints (neck, back, wrists) which makes her feel better (she doesn't have MS)

    I also noticed hyper pigmentation on my body recently like dark spots on my back and little moles on my body.
    This would not be due to MS. If you are concerned a Dermatologist is the best Dr. to see.

    I don't have prolonged tingling or numbers in my arms or feet. I do noticed that when I lay in certain positions or sit on the toilet the wrong way they do start to tingle.
    When symptoms, such as numbness/tingling are positional it's not due to MS. Our tingling or numbness is there regardless if we sit, stand, lay down, or move around.
    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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      #17
      Thanks for the responses, they are helpful.

      Hopefully they'll order a vitamin panel after my neck MRI. As of right now, they just want to wait for me to get it. It just frustrating that my GP has pretty much given up on me.

      I did go to a ophthalmologist last week and he said my eyes look healthy and there's nothing wrong with them, he doesn't know why I'm seeing floaters. But since then, it hasn't gotten any better and my color perception is off. It's kinda hard to explain just feels like colors are as bright anymore. Like reds don't seem as red and gray and silver looks kind of like the same color, kind of washed out. But the good news is that they are still 20/20.

      As for the cracking joints, I know what you mean, I don't think its MS related either but still wanted to put it out there. A lot of time, they just crack when I'm moving, my ankle cracks almost every step I take. Very weird.

      I'm trying to stay positive but it seems to be getting harder and harder. The symptoms are getting worse day by day. Sometimes I'm scared of going to sleep thinking about what's going to happen tomorrow.

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        #18
        Neck MRI

        I just found out that the neck MRI my neuro ordered is without contrast. Does this affect anything? Is it even worth it to do it without contrast?

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          #19
          Originally posted by Hassl3 View Post
          I just found out that the neck MRI my neuro ordered is without contrast. Does this affect anything? Is it even worth it to do it without contrast?
          Hassl3 ~

          The MRI images taken without contrast agent will show lesions, both old and new, and will show up as spots.

          The images taken after contrast agent has been administered will show only new lesions and they will be highlighted as bright spots.

          So to answer your question, yes it would be worth it to have the MRI, as it will show if there are any lesions. It just won't differentiate old lesions from new lesions, if there are any new ones at the time.

          This article, called Demystifying MRI's (from the National MS Society magazine Momentum) explains this and shows MRI images with and without contrast:

          http://www.momentummagazineonline.co...stifying-mris/

          Take Care
          PPMS for 26 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

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            #20
            Update!

            Thanks koko, I thought I already replied to your post but I guess I didn't hit submit.

            I just finished my appointment with the neurologist and we looked at the MRI of my c spine together and found everything to be normal except a little bit of arthritis but that's not something to be worried about he said. This really surprised me given everything that's been happening to my left leg and right arm.

            He advised me to go get a second opinion and that he wouldn't run anymore testing on me as it is not medically necessary. I didn't even argue with him about it as I knew it wouldn't change his mind. How can he figure out what's going on with me when he is already convinced of something else.

            I am so frustrated at the moment as my symptoms are getting worse, my left leg started feeling weak almost 24/7 now. Just a few weeks ago it only felt weak when I walked. My right arm is going down hill fast, it feels weak and when I use it, it feels stiff and uncordinated. Then there's my eyes, floaters, everything looks washed out, harder to focus.

            People I talk to thinks it's all in my head and that I'm exaggerating symptoms so I can get them to believe me.

            I've been just sitting in my car for the last hour feeling so hopeless and lost. I just don't know what to do anymore.

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              #21
              Hi Hassl3 ~

              I'm glad to learn that your MRI's are clean. However, the fact that you are dealing with so many symptoms is still quite puzzling.

              Originally posted by Hassl3 View Post
              He advised me to go get a second opinion and that he wouldn't run anymore testing on me as it is not medically necessary.
              Are you going to get a second opinion?

              Originally posted by Hassl3 View Post
              I didn't even argue with him about it as I knew it wouldn't change his mind. How can he figure out what's going on with me when he is already convinced of something else.
              What is it that he is convinced of?

              Originally posted by Hassl3 View Post
              I am so frustrated at the moment as my symptoms are getting worse, my left leg started feeling weak almost 24/7 now. Just a few weeks ago it only felt weak when I walked. My right arm is going down hill fast, it feels weak and when I use it, it feels stiff and uncordinated. Then there's my eyes, floaters, everything looks washed out, harder to focus.

              People I talk to thinks it's all in my head and that I'm exaggerating symptoms so I can get them to believe me.

              I've been just sitting in my car for the last hour feeling so hopeless and lost. I just don't know what to do anymore.
              I can understand why you feel hopeless and lost and frustrated.

              A second opinion seems to be a good idea, and the only thing left to do in order to find out what's going on.

              Did the neuro refer you to any doctor for the second opinion?

              Take Care
              PPMS for 26 years (dx 1998)
              ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

              Comment


                #22
                Yeah, I am going to get a second opinion but have to go through insurance and see if I can see someone out of network, not even sure how to so that.

                The neurologist I have been seeing is convinced that it's all anxiety and it's in my head which I can see anxiety affecting an arm and a leg but my eyes? I don't think so.

                He didn't refer me to another neurologist, he just told me to go back to my gp and have him do it. But the neurologist that my gp referred me to states they don't deal with symptoms I got, which I found weird so it's up to me to find my own neuro.

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                  #23
                  Hi Hassel3.

                  Originally posted by Hassl3 View Post
                  The neurologist I have been seeing is convinced that it's all anxiety and it's in my head which I can see anxiety affecting an arm and a leg but my eyes? I don't think so.
                  If your only concern about your vision is floaters and your Ophthalmologist found nothing wrong with your eyes then those floaters are normal and of no concern. Floaters can be ignored because the are of no consequence. If you focus on them it's very possible for the floaters to appear as many more. When I was a kid I would pay attention to them and follow all of the...it was a game for me.

                  A Neurologist isn't the best Dr. to evaluate your vision, Ophthalmologists specialize in the eyes. A Neurologists refers their patients to an Ophthalmologist when there are vision issues.

                  You can certainly get a second opinion but with normal MRIs a diagnosis of MS would not be made. Many things can cause the symptoms you are experiencing, including anxiety. Anxiety can cause body wide physical symptoms, including vision.

                  The best thing you can do is see a Psychiatrist and be evaluated with the possibility of medication. Getting you anxiety under control might improve many of your symptoms.

                  It's very possible what you are experiencing isn't a disease like Multiple Sclerosis.
                  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

                  Comment


                    #24
                    Originally posted by SNOOPY View Post
                    Hi Hassel3.



                    If your only concern about your vision is floaters and your Ophthalmologist found nothing wrong with your eyes then those floaters are normal and of no concern. Floaters can be ignored because the are of no consequence. If you focus on them it's very possible for the floaters to appear as many more. When I was a kid I would pay attention to them and follow all of the...it was a game for me.

                    A Neurologist isn't the best Dr. to evaluate your vision, Ophthalmologists specialize in the eyes. A Neurologists refers their patients to an Ophthalmologist when there are vision issues.

                    You can certainly get a second opinion but with normal MRIs a diagnosis of MS would not be made. Many things can cause the symptoms you are experiencing, including anxiety. Anxiety can cause body wide physical symptoms, including vision.

                    The best thing you can do is see a Psychiatrist and be evaluated with the possibility of medication. Getting you anxiety under control might improve many of your symptoms.

                    It's very possible what you are experiencing isn't a disease like Multiple Sclerosis.
                    Hi Snoopy, Thanks for the reply.

                    I wish the only thing I'm worried about is my eyes and the floaters and washed out color it sees. I could live with that no problem and no complaints. My main worries are actually my arm and leg, over the last few months it is gotten worse. I noticed the weakness in my leg feels like it radiates out from my knee and to the muscles around it. It feels like the longer I walk, the more stiff it feels and my knee feels like its going to buckle. My arm feels stiff at the shoulder and feels likes it battery operated robotic arm that scientist gotten really close to operating like a human arm but not there yet. My movements feels stiff, inaccurate, shaky and like the battery is too small and my work wants to stop working after using it for a while and needs to recharge the batteries with rest. There are new symptoms too.

                    The left side of my scalp started feeling like my hair is moving, like I'm sitting in the wind and the wind is blowing my hair pulling at the scalp. At first, I thought it was just my hair falling into place but turn out just something new I got to deal with. It doesn't feel like its tingling or enough that I call it tingling or numbness but like something is tugging at it.

                    There are times my body feel like it's so uncomfortable. It's feels like the uncomfortable feeling you get before a chill or a shiver and the shiver makes that feeling go away but the shiver never comes and your just left with that feeling. I don't know how else to describe it, it's very odd. Anyone else get this?

                    I did get an EMG of my left leg today and he said the test seems normal but have to wait for the written results.

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                      #25
                      Hi Hassl3.

                      I hope your EMG results are negative and all is well.

                      Did the Neurologist find weakness with your legs or arms? In the case of Multiple Sclerosis; we don't just feel weakness but our Neurological exam also indicates the weakness. Our movements don't just feel stiff but are stiff and, again, will be noted upon exam. Walking/exercise/stretching can actually help our stiffness.

                      A knee that (almost) buckles can happen to anyone, this is due to weakened muscles that support the knee. Working with a Physical Therapist to strengthen all of the muscles that support the knee will help.

                      As a patient you report symptoms and/or explain how you feel. Your Drs. are looking for evidence through exams and testing as to what might be going on. When all testing is normal then a Dr. is unable to diagnose.

                      Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria): https://www.nationalmssociety.org/Na...sdiagnosis.pdf
                      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

                      Comment


                        #26
                        Originally posted by SNOOPY View Post
                        Hi Hassl3.

                        I hope your EMG results are negative and all is well.

                        Did the Neurologist find weakness with your legs or arms? In the case of Multiple Sclerosis; we don't just feel weakness but our Neurological exam also indicates the weakness. Our movements don't just feel stiff but are stiff and, again, will be noted upon exam. Walking/exercise/stretching can actually help our stiffness.

                        A knee that (almost) buckles can happen to anyone, this is due to weakened muscles that support the knee. Working with a Physical Therapist to strengthen all of the muscles that support the knee will help.

                        As a patient you report symptoms and/or explain how you feel. Your Drs. are looking for evidence through exams and testing as to what might be going on. When all testing is normal then a Dr. is unable to diagnose.

                        Multiple Sclerosis has a diagnostic criteria (The Revised McDonald Criteria): https://www.nationalmssociety.org/Na...sdiagnosis.pdf
                        Me too, I hope the results are negative too.
                        I have had back pain for years for no apparent reason and have been seeing a spine doctor about it. He said it's probably a disc pushing on a nerve. He tested my leg strengh and my left was severely weaker than my right. Did pt for my back and legs for months but didn't get better. Had some other symptoms too, listed in my post but never thought it could be connected and all the other stuff started happening and you know the rest from my post.

                        My neuro test my balance and found it was off, couldn't really walk on tip toes or heels and was hard to walk heel to toe. Hyperreflexsive knees(both) and hyporeflexsive right arm but ignored it after clean MRI. Didn't want to run anymore tests and told me to get a second opinion.

                        Got my endo yo test vitamin b12 and vitamin d. Waiting on those results.

                        Comment


                          #27
                          Originally posted by Hassl3 View Post
                          I have had back pain for years for no apparent reason and have been seeing a spine doctor about it. He said it's probably a disc pushing on a nerve.
                          This makes no sense. If you are seeing a spine Dr. and s/he suspects a disc problem then why hasn't testing been done to determine if this is the case. Spine problems can cause Neurological symptoms.

                          Back pain - (Been having back pain for the last 2ish year). But thought it was the amount of sitting and lying down I did. I have been working out my back and going to chiropractor and PT and it help a bit but still hurts.
                          If you are seeing a Chiropractor that isn't who you should be seeing. Spine problems should be evaluated by a Neuro Surgeon. X-rays and/or MRI of the Lumbar spine is needed.
                          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

                          Comment


                            #28
                            Originally posted by SNOOPY View Post
                            This makes no sense. If you are seeing a spine Dr. and s/he suspects a disc problem then why hasn't testing been done to determine if this is the case. Spine problems can cause Neurological symptoms.



                            If you are seeing a Chiropractor that isn't who you should be seeing. Spine problems should be evaluated by a Neuro Surgeon. X-rays and/or MRI of the Lumbar spine is needed.
                            Sorry I wasn't being clear and left some stuff out.

                            This was the avenue I went down before anything else. I first starting seeing the spine doctor around April of last year. When I first went in he thought it was lumbar sprain, gave me an anti-inflammatory and said rest, which I did. A month went by and it wasn't better, he sent me to PT, it felt like it helped but not that much. He then ordered a X-ray which lead to MRI which was done maybe in August of last year. There's a "mild" budged disc between L4-L5 possibly pushing on the nerve, mild was what he said. I have the MRI CD but don't have the report and it's been a hassle trying to get it(still waiting for forms that they sent that I have to sign then mail). I talked to him about MRI trying to get more info but he said that the MRI is only a tool and that if he scanned 100 random healthy people on the street about 50% will have some kind of spine abnormality. He said he looks at the symptoms and treats according to the symptoms and not MRI. Don't remember the exact words but that was the heart of it. This was around the time he tested my legs and found my left to be weaker. He didn't think I need surgery to correct it since it wasn't bad enough to require surgery. He sent me to a Chiropractor and wants to do a epidural steroid for my back but insurance denied that. I talked to him about my arm and he said it wouldn't have caused any problems for my arm since its my lower back, it would only affect things below it.

                            So this can explain my back problems and leg but not the vision, the cognitive issues, the arm, the constant twitching all over my body, strange scalp sensation, the weird sweating for no reason. Especially my arm, it's gotten to the point where if I write for more minute my hand writing becomes illegible. I was helping my father in law fill out an application and by the end my hand felt so stiff and was shaking enough for me to stop and just hand the pen over to my wife to finish. The form was only 3 pages. The arm was my first symptom starting ~8 years ago but gotten really bad over the last 6 months.

                            I'm not saying I have MS and hope I don't but is one of the possibilities as the symptoms fit but it's not the only thing I'm looking at. I now have to find a different neurologist and talk about what's next. My endocrinologist also told me to find a GI doctor about my diarrhea.

                            Hopefully this cleared some things up.

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