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    Limbo vent, long, sorry

    I'm sure most everyone reading either is or has been in limbo. So I'm sure my complaints are mundane and common place but I don't really have any one to talk to about this in real life.

    I don't know when it became a normal thing to me to have my arms get heavy and tired brushing my hair, but it seems like a long time. My hands are weak after attempting as well. My mother looked at me like I had 10 heads when I said it. A sign that my normal is not normal.

    The falling over seemed pretty cut and dry. People could see something was wrong, even though I still feel like maybe I'm making it up once it fades. But, the falling has returned on and off, confirming that I was not making it up.

    The blurry vision comes and goes as well. I also feel like I am making that up. But when I had to ask a coworker to read a piece of paper for me because every pair of reading glasses I had did nothing, I was close to tears from frustration.

    Taking my daughter for a walk in the stroller shouldn't turn into needing to use the stroller as a walker, but it does. So does taking a trip to the store, I need to have the cart because even though it starts off fine, I typically need it for balance and strength, even on a short trip.

    Sometimes it all gets worse at night, and I can't play with my daughter. My limbs and my head become very heavy, and I have to just sit and let my head fall to the side. Sometimes it feels like my eyes are rolling into the back of my head of their own volition, but I can't tell if that is because I am fighting sleep. Words are harder to use at these times. Sometimes it feels like my mouth is constantly about to speak jibberish but it doesn't, but my tongue feels strange.

    The tremor in my hands, especially the right, seems to have stuck. At first it's seemed to just do that when I was falling over, but now my right hand trembles every day. I really hope that my coworkers don't think I'm on drugs or something. Because that is what it looks like whenever I do anything with that hand lately.




    Brain lesions have been there for at least 6 years, always blamed on migraines. Two specific lesions have become larger within the year, which probably had not happened so rapidly before. No lesions on the spinal cord at all. Evoked potentials were good. All blood work is always normal. Thyroid, lupus, rheumatoid factor, cbc, lipids and Lyme are always checked. I'm always told it's all good.


    On October 6th, I go back to the neurologist. I don't know if the most recent MRIs along with recent "attacks" will be enough for him to make the diagnosis. I don't want to go for a lumbar puncture. Not because it frightens me, but because it will mean more waiting. I just want him to make the call, get it over with.


    I've had almost monthly episodes since March. 30 days have definitely gone between them, so they aren't quite every month. Each "attack" has lasted at least a week. If I try to think about it, since December, there has been probably around 5 or 6 distinct "attacks". I'm concerned that so much of this is happening in less than a year, that I will be sooner to reach a state of disability. I wonder if perhaps I shouldn't have any more children, because I might not be able to care for them.


    I already have an extensive medical history, both mental and physical and I'm not sure how I am going to handle this diagnosis, if I do indeed receive it. I might feel validated, but I also feel that I might (mentally) not deal with it well at all.

    I just have to make it to October 6th. October 6th. October 6th. I'll worry about it after October 6th.


    Congratulations if you were able to stomach my "dearly diary" post.

    #2
    Hello kailur and welcome to MSWorld.

    There is no symptom(s) exclusive to MS and no single test, by it's self, that can give a definite diagnosis of Multiple Sclerosis. Many other conditions, medications, vitamin/mineral deficiencies and mental health issue all cause similar symptoms as those seen in MS.

    Lesions may or may not be related to MS as other things can cause lesions. If you have had the same brain lesions for 6 years then they might not be MS lesions. Typically in MS the MRI shows changes, more/less lesions

    I don't want to go for a lumbar puncture. Not because it frightens me, but because it will mean more waiting. I just want him to make the call, get it over with.
    Diagnosing isn't necessarily as easy as that, although it would be nice.

    It's very possible the Neurologist won't recommend a Lumbar Puncture as it is quite invasive. However, if he does you should seriously consider it...if you really want answers. The more information your Neurologist can get through testing the better it could be for you.

    The episodes or attacks you are having may or may not be MS related. It would be very helpful for your Dr. if you would make an appointment to be evaluated when an episode happens.

    Have you been to an Ophthalmologist about your blurry vision? If not that would be my suggestion.

    Hope all goes well on October 6.
    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


      #3
      Originally posted by SNOOPY View Post
      Hello kailur and welcome to MSWorld.

      There is no symptom(s) exclusive to MS and no single test, by it's self, that can give a definite diagnosis of Multiple Sclerosis. Many other conditions, medications, vitamin/mineral deficiencies and mental health issue all cause similar symptoms as those seen in MS.

      Lesions may or may not be related to MS as other things can cause lesions. If you have had the same brain lesions for 6 years then they might not be MS lesions. Typically in MS the MRI shows changes, more/less lesions



      Diagnosing isn't necessarily as easy as that, although it would be nice.

      It's very possible the Neurologist won't recommend a Lumbar Puncture as it is quite invasive. However, if he does you should seriously consider it...if you really want answers. The more information your Neurologist can get through testing the better it could be for you.

      The episodes or attacks you are having may or may not be MS related. It would be very helpful for your Dr. if you would make an appointment to be evaluated when an episode happens.

      Have you been to an Ophthalmologist about your blurry vision? If not that would be my suggestion.

      Hope all goes well on October 6.
      Yes I went to the eye doctor the day I had the worst vision and he said my eyes were being slow to focus and they did a 3D looking scan of my optic nerve and said that was healthy. Other than that vision "normal".

      The lesions have been there but from what I can tell, two specific lesions have gotten worse within the year. Previously I don't think that there was change. My guess, after giving birth maybe immune system triggered?

      In March I was in hospital for the falling but I don't think that they found active demylination at the time. They kept me for observation for a few days, on call neurologist there only had my MRIs from 6 years ago because different hospital systems. He understandably saw "little change" over 6 years time. I just had MRIs a year ago he had no access to, and now that I just got them done again at the same hospital as last year, that report shows increased size in 2 of the lesions. I only know this because I picked up my own copy of the reports.

      Most recent falling in August my neurologist wrote out the MRIs and the script said specifically "MS rule out flare" but it was several weeks before insurance authorization went through and by the time I got them done the falling had faded away.

      Neurologist has specifically said that lumbar puncture is the next step if MRIs I just had don't show enough for diagnosis. Previously he had said it might not be MS but the last time I saw him, I was very unwell and he no longer said he doesn't think it's MS, he just looked rather grim when he saw what state I was in and said he can't "give me the answers I'm looking for" until all the tests are done.

      Thank you for the well wishes, I'm certainly glad I'm not actively falling right now so that's good.

      Comment


        #4
        I saw the neurologist today, he went over the MRIs with me, and told me what I had already read on the reports. He is going ahead with the lumbar puncture. He said his suspicion for MS is "low" and I asked what else it could be, he said maybe Lyme and that he had to run all the tests on my spinal fluid. We shall see, now to wait for the insurance approval.

        Comment


          #5
          Originally posted by kailur View Post
          I saw the neurologist today, he went over the MRIs with me, and told me what I had already read on the reports. He is going ahead with the lumbar puncture.
          From this I am assuming you have agreed to the Lumbar Puncture, glad to hear it. I don't know of anyone who did have their concerns, fears of having a LP but it might be helpful in getting answers.

          I hope all goes well and answers are in the near future.
          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


            #6
            When is your LP schedule for? Sorry you are dealing with this.

            Comment


              #7
              I had the lumbar puncture on Wednesday, and since I'm a masochist I've been obsessively checking my online health records even though my follow up with the neurologist isn't until the middle of November. The results are there, and they are negative for everything. No Lyme, no abnormal amount of myelin, and negative for o bands. I know that not everyone with MS gets positive for the o bands.

              Frustrating, especially when I barely survived a trip to the grocery store yesterday! Walking around with the cart was too much and I could barely carry the groceries into the house, my balance was shot and my limbs were weak. I'm afraid that the neurologist is going to just tell me it's all in my head.

              Comment


                #8
                Thanks for updating us. Has your Neurologist told you that there is nothing wrong with you?

                It sounds like he is running tests so that is good. I understand what you are going through. Stick with the pursuit of figuring out what is going on with your body. What you are experiencing is there for a reason. At the end of the day, whether it's A, B, or C . . . you deserve to have the answer and some form of treatment.

                Hang in there. I hope you get answers soon. It's OK to take a break. Obsessively looking at your medical records will not help the situation. So if you are going to do it anyway, pick one day a week that you are allowed and that's it. I'm serious. You have enough going on. You don't need to pile on more stress and anxiety on top of it.

                I hope you have a nice weekend No matter how crappy you feel, try to do something nice for yourself. Rest and relax.

                Comment


                  #9
                  Quick update, I am still in limbo, and still functioning pretty poorly. I went to the neurologist yesterday to follow up from November. The most recent bloodwork shows some minor elevation of some platelets and igm, but protein c came back 14 when the max reference is 4.9, so my neurologist gave me the name of a rheumatologist he thinks will do a better work up than the one I saw previously.

                  I have a physiatrist appointment scheduled for March 17, at his recommendation as well.

                  He has also ordered upper and lower emg to look for nerve damage.

                  At least he listens to me! Definitely one of the better doctors I have seen in my life.

                  Some days suck when it feels like my body is failing me in even the most basic of tasks, but I feel better after yesterday's appointment.

                  Comment


                    #10
                    Hi kailur,
                    I read your post a few times and I didn't see that you had any blood levels tested or if you had a Lyme disease test ! Maybe, I missed that ! If you haven't been tested for vitamin D, you need to get your levels and they need to be above 30ng/ml ! Do NOT accept a doctor's word that the levels are 'OK'! And what about ruling out any of the 400 mimics of MS ? I wonder what your neurologist is thinking ! It doesn't seem like your doctor is seriously looking for a diagnosis ! Good luck

                    Comment


                      #11
                      Originally posted by JerryD View Post
                      Hi kailur,
                      I read your post a few times and I didn't see that you had any blood levels tested or if you had a Lyme disease test ! Maybe, I missed that ! If you haven't been tested for vitamin D, you need to get your levels and they need to be above 30ng/ml ! Do NOT accept a doctor's word that the levels are 'OK'! And what about ruling out any of the 400 mimics of MS ? I wonder what your neurologist is thinking ! It doesn't seem like your doctor is seriously looking for a diagnosis ! Good luck
                      I have been tested for Lyme many times over the years, I had one Dr tell me that I had it in 2003/2004 and it took 2 rounds of antibiotics to feel better. In that same time period a different Dr said I did not have it. In 2010, I sought out a "Lyme literate doctor" to see if I had chronic Lyme, and he told me that I was fine. I'm pretty sure that my current neurologist said that her checked for Lyme in my lumbar puncture as w, and all was normal.

                      I know my vitamin B was checked in November and it was normal. My vitamin D should be ok, as I take a multivitamin shake mixed with milk every morning, as well as 2 10,000 iu d3 capsules daily.

                      I do obtain a copy of all of my test results, some I don't take my doctor's word 100% as gospel, regardless of how much I like a particular do.

                      Comment


                        #12
                        Slight update, saw the physiatrist who was super nice and ordered physical therapy 3x a week which is going to be hard to figure out how to schedule being a full time working mom. She also suggested going to a place like the mayo clinic (don't live anywhere near there) because looking over all of my tests, she said "something is definitely wrong" but nobody has been able to figure it out. She advised having an entire team of doctors sit down in a conference room would be helpful. She also acknowledged how it is very difficult for get to places like that.

                        She recommended the same rheumatologist that my neurologist did and I am trying to get an appointment there, but they are waiting for records from the first rheumatologist I saw in order to consider giving me an appointment.

                        Today, I had a new thing where my he started vibrating while I was ju sitting at my desk. I am wondering if I should call my neurologist about it.

                        Comment


                          #13
                          Hi kailur,

                          She also suggested going to a place like the mayo clinic (don't live anywhere near there)
                          Mayo Clinic has different locations:
                          http://www.mayoclinic.org/about-mayo-clinic

                          I wish you well in what ever direction this journey take you
                          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


                            #14
                            Originally posted by kailur View Post
                            She also suggested going to a place like the mayo clinic (don't live anywhere near there)
                            Hi kailur:
                            Every year U.S. News & World Report publishes its ranking of best hospitals in the major medical specialties. The 2016-17 results are on their website here: http://health.usnews.com/best-hospit...d-neurosurgery. (If the link isn't live, copy and paste it into your browser.)

                            The Mayo Clinic and Johns Hopkins University usually come out at the top. For 2016, Mayo was again #1 in the US for neurology. Besides the main clinic in Minnesota, Mayo has locations in Arizona and Florida. For 2016, Hopkins was ranked #1 for Rheumatology and #2 for Neurology.

                            But there are more outstanding hospitals on the list. The top 10 are spread across the country, from the east, through the midwest, to the west (Mayo's locations cover all 3 areas). If distance is an issue, you can start by picking the highest-ranking one from the list that's nearest to you. Good luck.

                            Comment


                              #15
                              Hi Kailur,
                              I didn't read all posts just the first couple.
                              But i just wanted to reply about your worry of having more children etc.

                              Did you know that statistics show that presentations/flares often occur just after giving birth?
                              Mine did. How old is your child?
                              I also went on to have five children and again if we look at stats - women with ms that have more than 3 children appear to plateau and not progress as fast as those who don't.

                              I'm not advocating doing what i did (absolutely not! I think i was suffering temporary insanity!) but i was just hoping to alleviate some of your worry at this time. Docs still don't have any clue why these stats occur but they do.
                              So just take one day at a time and deal with what you have to on that day and if you get through this period of intense flares and settle down then think about the future course.
                              Hope you are feeling better,
                              Caroline

                              Comment

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