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    Old 03-06-2014, 07:12 AM   #1
    mal2014
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    How to proceed...

    I am a 38 year old female. I noticed a couple of weeks ago that when I was working out I would try to do these kicks and I felt like I was going to fall over, I did not think much of it until last week I realized that I could not move my right big toe. I would try so hard and it would not move. I could physically move it, without pain, but could not seem to move it on it's own. I also realized I had really decreased range of motion in my whole foot and ankle and I felt really weak. All of the muscles felt really tight but I did not have any pain. I went to the podiatrist, because it had to do with my foot. He seemed stumped. He said that I had a bunion, but that would not cause all of the nerves and muscles in my foot to just "give up". He asked me all sorts of questions about where I grew up and what my heritage was. He sent me for an EMG and said I may be in the wrong office and made a mention of MS.

    I did not know much about MS, so I looked it up and talked to some people about it. Someone that I worked with reminded me of my recurrent shingles that I get on the back of my neck, so of course I googled that and saw a study that showed a nearly 4 times increase in having an MS diagnosis after a shingles attack. I also realized that the podiatrist asked me the questions about where I was from because of MS being more prevalent in northern areas. I grew up and have lived my entire life in Washington state.

    A few days after my initial symptoms I started being able to move my foot more, but I was feeling tingling in my foot and was noticing a weakness in my right arm and fingers, nothing compared to my foot, but I was concerned. I decided to go to my regular doctor, I wanted to know if I should still go to the EMG test and what his thoughts were. He said to still go to the EMG and he referred me for a brain MRI and to the neurologist. He also did blood work. He also mentioned MS.

    So far my EMG came back normal (even though I obviously could not move my foot correctly) and that Dr mentioned MS to me as well, my bloodwork is normal and the MRI (which was only done without contrast) is normal. He still wants me to go to the neurologist. I have almost complete movement back in my foot, still getting tingling sensations though. Holding my phone is tiring. My right hand and foot are significantly colder than my other side, and I made my husband check because I feel like I am going crazy. Looking back over the last 3 years I have had sexual dysfunction (Sex is not pleasurable, as I always tear) and I leak urine sometimes. I went to the Dr. in 2011 for extreme fatigue and generally not feeling well (they did blood tests and everything was normal) Also for about a month prior to the foot issue I keep feeling as though my eye perscription is not strong enough.
    and left eyelid is feeling heavy, but I am going to the eye doctor tonight.

    Can someone point me in the right direction. I realize that no one can diagnose over the internet, but I am not sure what I am even supposed to do at this time, if everything is normal, why is all of this happening?

    Thank you for reading.

     
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    Old 03-06-2014, 08:12 AM   #2
    MSJayhawk
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    Re: How to proceed....

    mal2014,

    Welcome. Unfortunately there is no quick answer. There are over 400 known MS mimicries for which there are specific tests, but there are no specific tests for MS.

    You have had blood tests done. Did these include Lyme Disease and vitamin deficiencies?

    While mention was made of MS, the best way to delve into this is to see an MS Specialist (a neurologist whose specialty is MS). Based upon your preliminary exam, the MS Specialist would order an MRI if your condition piqued his interest. The MRI should be with and without contrast in a closed machine (slab into the tunnel). Based upon this result, further testing might then be ordered. If there are lesions present, this might provide some indication as to your cause. The presence or absence of lesions will neither confirm or deny MS. The entire diagnostic process requires the elimination of the known mimicries and then meeting the criteria of the Revised McDonald Criteria.

    Stress and worry can feed into your problems. You need to try to avoid stress and worry as much as possible. If you have MS, it is not fatal, but it is chronic. keep moving, but make sure your exercise is in moderation and try to keep it low impact. Avoid massages and chiropractic manipulation until you know you do not have MS as these can worsen symptoms unintentionally.

    Again, Welcome! Thank you for sharing.
    __________________
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    Old 03-06-2014, 08:27 AM   #3
    mal2014
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    Re: How to proceed....

    Thank you so much for replying so quickly. I know that my mind can play tricks on me. My MRI was done without contrast in an open machine. I am not sure of the specialty of the neurologist that I am going to.

    I was tested in 2011 for Vit D and was normal, this time Vit B12 was normal. I was not given a test for Lyme, probably because of where I am from. I looked at the states where it is concentrated, I have never been to one of those states, but I will ask about it. I don't believe that I have ever seen a tick, let alone been bit by one, but I will ask about it.

    Again, thank you so much for taking the time to reply.

     
    Old 03-06-2014, 08:46 AM   #4
    MSJayhawk
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    Re: How to proceed....

    mal2014,

    Thanks for the updated info. An open machine has conveniences, but it can miss lesions easily. An MS Specialist would likely have ordered tests with and without contrast. The contrast will "light up" any active lesions.

    Your mind can play a major role in your symptoms. Stress and anxiety can act as a standalone problem or can accompany MS. In either case- it is very real.

    You should note that about 5% of MSers may present with no lesions initially.
    I would encourage you to seek out an MS Specialist. A teaching University hospital, your GP referral, or your local MS Association or Society office can help you find an MS Specialist.

    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 03-06-2014, 01:27 PM   #5
    mal2014
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    Re: How to proceed....

    I got this message from my GP:

    The problem with your symptoms is that they are variable in time and location; this still could be something with the brian and spinal cord like MS but requires further monitoring and evaluation; the foot specialist may want to do further evaluation on the leg/ foot area
    The neurologist can help us figure this out further.
    Dr. xxxx

    Guess it is just a wait and see... Thank you again. I will continue to post to update my story as this goes along....

     
    Old 03-06-2014, 01:57 PM   #6
    MSJayhawk
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    Re: How to proceed....

    mal2014,

    I hope that you can get some answers. As long as MS remains in the picture, please make sure that you find an MS Specialist.

    I hope you get answers soon and look forward to your update.
    __________________
    MS diagnosed since October 3, 1982
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-06-2014, 02:25 PM   #7
    LM10c5e2
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    Re: How to proceed...

    Hi Mal2014, I just received my diagnosis of MS 3 weeks ago, but I can tell you that the limbo is worse than getting the news, in my opinion. I had an open MRI with and without contrast of my brain, c-spine, t-spine and lumbar spine, and all were normal. When I switched to a different neurologist, she informed me that the films were of poor quality so she ordered new ones in a
    T3 closed machine and I had lesions in my brain, my c-spine and my t-spine. I strongly recommend that you see an MS specialist as MSJayhawk has stated as well, it may not be MS, but speaking from experience, I had almost 9 months of torture waiting to figure out the reason for my symptoms which were numbness from my feet to my abdominal area, balance issues, lightheadedness and dizzy spells. I also had some others but those were the main symptoms that were the most troubling to me. I surely hope you find answers! I know how hard living in limbo is, and I was beginning to think I was crazy. Keep us posted! Take care.

     
    Old 03-07-2014, 08:12 AM   #8
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    Re: How to proceed...

    Good news is that my vision problems is cataracts, which is not really good news considering my age, but my dr. did not see any signs of ON. He did say, "you've got a lot of weird stuff going on". I was beginning to think that some of these symptoms were in my mind, but I guess my vision is really weakening, not that I want it to, but it makes me feel better that there is a reason, if that makes sense.

    I actually feel really good today! I am trying to have a positive attitude. This is what it is. I may not find out for a while exactly what is going on, and it does not matter how much I worry, it will not make it any faster or better! I do not have control over it, and all of the worry is just causing me to feel worse. Most of the feeling is back in my arm and leg and all that remains is a "buzzing" electrical shock feeling from my head to my finger tips that comes and goes, I can deal with that I am going to have positive thoughts. Thank you all for writing me!!

     
    Old 03-07-2014, 08:33 AM   #9
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    Re: How to proceed...

    mal2014,


    Count your blessings no matter how small they seem. Sorry you have to deal with cataracts, but at least this can be treated. ON affects about 20% of MSers and is also a separate disease. I am glad you do not have to deal with ON. The fact that your doctor recognizes "weird stuff going on" is a good thing as it provides an assurance that you are justified in what you have been sharing.

    Spring and fall are my two best seasons. If you have MS, spring might be your good season too. While many MSers can indeed experience "good times", I would encourage you to press forward for answers. I delayed seeking a doctor for 5 years- a mistake, I think. Many make the mistake of feeling better and then stop searching for an answer until the MS returns and they have to start all over in their search. If you have MS, there should be sufficient evidence in your body to "make your case". If not, keep a follow-up, but do not stop until the doctors have provided answers with objective evidence to substantiate their diagnosis.
    __________________
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    MS onset circa 1977
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-08-2014, 07:48 AM   #10
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    Re: How to proceed...

    Quick question. Can MS cause stiff neck pain? I have been dealing with this for awhile. I will wake up and my neck will hurt so bad. It is unprovoked pain. I will wake up with it. I can feel the pain worse where my neck connects to my head. It will take days to subside and muscle relaxers only help slightly. I am not sure if this is or could be related to the other issues I have going on. Any thoughts?

     
    Old 03-08-2014, 08:58 AM   #11
    MSJayhawk
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    Re: How to proceed...

    mal2014,

    While such pain might be associated present with some MSers, the fact that you got some help with muscle relaxers would probably make it "no" for me. BUT, it is worth having your doctor check it out because it could be pinpointing your cause or it may simply be something else. Personally, similar neck pain I have had has been connected to other problems for me.

    That aside, cold compresses will probably be the first thing you might try. If this is ineffective, try alternating cold and warm compresses until you can determine if any relief is forthcoming.

    Lastly, you mentioned shingles as a recurring problem. Shingles can leave you with weakened muscles or pain too and without any outward sign. I would certainly bring this up as another possibility.
    __________________
    MS diagnosed since October 3, 1982
    MS onset circa 1977
    Proud to be MED FREE!
    Eternally blessed and eternally optimistic!<><

     
    Old 03-09-2014, 08:28 AM   #12
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    Re: How to proceed...

    Mal2014,
    Hi. I just wanted to jump in here and say a few words...first, Im sorry you are having so many things going on at once. Its hard when you have no idea why your body isnt cooperating, and even harder when you cant get answers.

    You mentioned that you had an MRI, without contrast, but where was that MRI? Was it only your brain? There are other places where lesions can show up. Also, you mentioned shingles...which doesnt "go away" and can continue to have symptoms long after its treated, since it is viral and will remain dormant in your system. And lastly, you refer to the neurologist which your general doctor sent you to. How familiar with MS is this neuro? Most general neurologists are just alittle less familiar than an MS specialist, which should be used during the diagnostic phase....once diagnosed, you can switch back to a general neuro as long as they are familiar with the MS drugs which are available. You would be surprised to learn that many neuros have little or NO familiarity with MS...but specialize in things such as migranes, or strokes...

    I hope you find the right doctor, have the right tests and get some answers soon. If we can help with anything, please know we are here.
    Nikki
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    Old 03-09-2014, 03:40 PM   #13
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    Re: How to proceed...

    Thank you for responding. Yes, the MRI was only of the brain. I looked up the Neurologist and that's all it said he did not specialize in anything.

    I had something really strange happen last night. I went to open the refrigerator and I lifted my hand to grab the door and pulled but I just fell backwards and knocked a glass over that shattered. I had my hand on the door and it was like I wasn't strong enough to hold on. Feel kind of weak today, went shopping with my sister for her wedding shoes and tripped and nearly fell while we were walking twice because I wasn't picking my feet up enough.

    Thanks again for responding

     
    Old 03-09-2014, 05:00 PM   #14
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    Re: How to proceed...

    mal2014,

    Sorry to hear of your fall. Trips and falls are one of the major commonalities with many MSers. When I built my new house, I built it without thresholds, transitions, and no carpet/rugs. You might check your shoes and see if there are scuffs which could indicate foot-drop. I have had foot drop for over 36 years. You might need to change your shoes or use a cane. I did both. My rehabilitation nurse helped fit me with a pair of shoes which have helped lessen my foot drop.

    As your neuro is a general neuro, you need to move on to see the MS Specialist. If you do get to a diagnosis, your general neuro might be able to handle things. My MS Specialist is still my favorite, but there are MS Specialists who do well with diagnosis, but not long term care.
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-09-2014, 05:32 PM   #15
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    Re: How to proceed...

    I kind of wonder if foot drop was what I was experiencing when I couldn't move my toe and my foot had really limited movement. In the past I have tripped multiple times walking in a hall at work, I joke "oops, speed bump" if anyone saw. I guess I could have been experiencing milder symptoms at that time. This time I am not even sure what made me examine my toe, foot. I wasn't in pain and I was walking, but realized that I was walking on the outside of my foot to compensate. I could not balance on that foot though, but I seemed to be walking ok.

    About the neurologist, I have my first appt on march 19, do you think I should cancel it and go to an MS specialist right away. Im going to this one because that is where my GP referred me to. It is at a hospital affiliated with the University of Washington, but when I looked at the specialties of the clinic, MS wasn't even listed. Thanks again!

     
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