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    Old 03-09-2014, 05:47 PM   #16
    MSJayhawk
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    Re: How to proceed...

    mal2014,

    I would ask for a referral to see an MS Specialist. While a university may have an affiliated hospital, this does not guarantee a neurology department. I go to an MS Clinic which is at the university medical campus/teaching hospital. You might also inquire with your local MS Association or Society office.

    Foot drop or foot weakness can be a long term problem. If you have been experiencing this, you will need to remain vigilant. Falls are no fun and can rob our esteem and lead to injuries which will further affect our lives. Stay safe!
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    Old 03-20-2014, 01:45 PM   #17
    mal2014
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    Re: How to proceed...

    Update.... and a big big thank you!!!

    I had a shingles outbreak on Saturday. The worst pain and fatigue that I have had with them. Normally I can just let it run its course, but I needed medication this time.

    I went to the "general" neurologist appt yesterday. I was not very impressed with him, found out later that his specialty is sleep disorders. I brought a copy of my MRI that was done that was normal. He did not look at the disc, but he did look at the report and told me that I did not have MS because the report was normal. If it were not for you all, I would have walked out of there saying ok, but because of you all, I asked about an MRI with contrast in a closed machine. He agreed to refer me for a Brain and Cervical Spine MRI With and without contrast. He was also concerned with my Vit B12 levels and although they fell within the labs limits of normal, he said that he thought it should be higher, so he sent me for a few more labs to help see if that is a problem. Anyone with any information on B12 deficiency?? Does it go with MS or is it a thing of its own?

    Just waiting for insurance approval for the MRI.

    Thank you again for helping me to be proactive about my health.

     
    Old 03-20-2014, 03:12 PM   #18
    MSJayhawk
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    Re: How to proceed...

    mal2014,

    Thanks for your update. I can only encourage you to jettison the general neuro and seek an MS Specialist if you are going to gain any traction in finding an answer.

    Vitamin B as well as other vitamin deficiencies can cause symptoms to present, but if you are in the normal range, at least in the middle of normal, then you should not have a problem, I think. Sleep disorders can have an adverse effect on the body and harms women more than men. This said, I still think your neuro is out of his league in dealing with your case.

    As he did not bother to look at the images and only read a report would be an indicator of a doctor I could not trust. My MS Specialist reads all of her images regardless of the radiologist reports.

    Keep strong and remain proactive for your case. You deserve some real answers!
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    Old 03-20-2014, 05:06 PM   #19
    mal2014
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    Re: How to proceed...

    I have an appt with an ms specialist next Thursday. The neuro I saw did my whole exam without asking me to take off my boots to see the foot that I had original issue with even though I told him it was only about 90% better. He did not seemed impressed with any of my symptoms.

    Do you think I should wait to see the specialist before I get the MRI? This one is with and without contrast in a closed machine that they use specifically for the brain. Just not sure if I should just chalk this up to a loss and move on or get the mri and take the films to the specialist.

    Also my B12 was in the lower end of normal. The range was 180 - 900 and mine was 277 he said he would like to see it at least 350. I did another blood draw today that were additional tests to help determine if I was truly deficient.

    Thank you again

     
    Old 03-20-2014, 05:15 PM   #20
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    Re: How to proceed...

    mal2014,

    I think that if you have the MRI scheduled before you see the MS Specialist, I would go ahead and have it done just to save time. I assume that the MS Specialist will order an MRI based on what you have shared and the fact that you had had the open machine previously.

    Your visit with the MS Specialist is more important than the MRI at this time. I hope the MS Specialist is able to get you some answers soon.

    I would probably ask the MS Specialist about your Vitamin B levels too. They may not be concerned with your low range because 277 is still above 180, but the doctor would give you the best advice. You can supplement B with supplements or increase your B level through a dietary change.

    I hope you have a good appointment!
    __________________
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    Eternally blessed and eternally optimistic!<><

     
    Old 03-27-2014, 05:25 PM   #21
    mal2014
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    Re: How to proceed...

    Thank you so much for all of your advice. I went and saw the MS Specialist today. What a relief. Finally someone that listened to me. I told her everything that I could think of relevant or not. She listened, asked questions and then examined me. After the exam she said, I thought I would see more. I said like what? a bulging disc?? She said, no, evidence of lesions on your spine. I didn't know that you could tell just by an exam. She said, but you are an otherwise healthy person and the majority of the symptoms I was having have subsided. She is sending me for a VEP and a cervical/thoracic MRI and some how my films from my other brain MRI had not made it to them but she will look at those and decide if I need another one.

    Finally, someone who listened to me. I told her the other neurologist told me that I was too old for MS, (I'm 38) and that my problems were likely from low b12 (which is actually still in the normal range, but low normal) and that I could just get shots for that. She looked at me weird when I told her the age thing and when I said that I was told that I could get B12 injections she said that my B12 was a little low, but injections likely would not correct the problems I was having. She said that the picture I gave her pointed to MS. I am still trying to process that, but I feel almost a relief, knowing that I am closer to answers than I was yesterday. Thank you all so so much. I would have just gone along with whatever a dr told me, because, well they are a dr. Because of this forum, I was proactive for myself!!!

     
    Old 03-27-2014, 07:56 PM   #22
    MSJayhawk
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    Re: How to proceed...

    mal2014,

    I am happy to hear of your update. It is indeed wonderful when you fall into the care of the MS Specialist. It is like a surgeon getting right to the problem.

    Keep in mind that a VEP may be negative or positive and is not a specific MS test. I am glad you have someone who is moving forward with you. Had there not been something apparent, you probably would not have had the tests ordered. I think that you will get to a definitive diagnosis soon. I am still hoping you can wave good-bye to MS nonetheless!

    Again, great update and what a tremendous uplifting experience for you.
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    Eternally blessed and eternally optimistic!<><

     
    Old 04-10-2014, 07:46 AM   #23
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    Re: How to proceed...

    Just wanted to update everything. I had an MRI of my cervical/thoracic spine and it was normal. I followed up with the specialist yesterday who said that she was really surprised that we did not find anything and that although everything came back in the normal range, she did not feel comfortable just letting me go. She said that we are going to hope that I do not have another attack. If I do not have another attack, like not being able to move my foot we will repeat the full scan in a year, but sooner if I do. She said that the Brain MRI I had done was of poor quality, the place that i went for that only did 21 slices and they normally do 50. I asked if she thought I should redo it and she said that she felt comfortable waiting and I trust her. And I am feeling so much better. She told me that because no lesions were found my chances of having a 2nd attack were lower but the fact that the symptom that I did have was a motor symptom made my chances higher. She said about 20% of people who are similar to me (normal MRI, but a neurological episode that does not have any other explanation) go on to have MS diagnosed over the next 15 years, which I was like ok, 1 in 20 is not that bad, but then I realized it is actually 1 in 5, but still more likely than not that I will not have it.

    I did have two questions that I forgot to ask her that maybe some of you may know. One is what is an artifact on an MRI? I had two spots on my cerebellum that were lighter than the rest of it, they were not white, but a lighter gray. She said that she believed they were artifacts because she couldn't find a correlating spot on a different weighted scan, but that they did not do a side view to match it up. Any clue what that means???

    Also, for approximately a month before I noticed not being able to move my foot, I would walk into a room at my work and smell cigarette smoke. It would happen every time to the point when I would talk I would almost choke on my words because I could not breath, because I really smelled the smoke, but no one else smelled it. I just realized that it was not happening any longer. I no longer smell that and I forgot to ask her if this could somehow be neurological? Any ideas??

    Thank you all for your support throughout this matter. I will be checking back in periodically!!

     
    Old 04-10-2014, 09:07 AM   #24
    MSJayhawk
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    Re: How to proceed...

    mal2014,

    Thanks for your update.

    As to your questions: An MRI image artifact is any feature which appears in an image which is not present in the original imaged object. This can be caused by the improper operation of the imager, and other times a consequence of natural processes or properties of the human body. Artifacts can obscure, and be mistaken for, pathology. Therefore, image artifacts can result in false negatives and false positives. Your previous MRI "slices" were quite thick. There have been numerous studies which showed an increase in missed lesions due to thick slices. I would think that new images would have been ordered in light of the acknowledged poor images.

    Smelling cigarette smoke (or something burning) as you shared is called parosmia- (smelling something foul like cigarettes or burning rubber when nothing is around to actually be causing the odor). Since you did not discuss this with your doctor- PLEASE DO. These smells can be signals within your body that can indicate epilepsy, tumor, or a neurological concern.

    I hope things go better for you.
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    Old 05-03-2014, 07:29 AM   #25
    mal2014
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    Re: How to proceed...

    My foot is acting up again. It is gradually getting weaker, I can not point my foot on right as much as left, my shin is sore and my range of motion is declining since yesterday, my muscles in my lower leg feel really tight. I still have some movement in it and I can walk, and do not feel like I am walking strange. Also this morning before getting out of bed started feeling electrical shock feelings again. Looking back over the last week have been having a hard time with finding the right words, calling people wrong names etc. I have had increased visible muscle twitching for the last two days, does not stay long. Had all of that before but had improved. I have been trying not to make too much of all of that, but with the definite lack of movement in my foot that I am experiencing I can not ignore that.

    Is it normal to have symptoms disappear and then the same ones come back with MS? My MRI's were clear, but Dr wanted me to come back in a year or sooner if new symptoms appeared. This isn't new, but it is a change in my movement that had improved. I am feeling some pins and needles on the bottom of my foot. I tripped going up the stairs this morning, caught my self and did not fall. Just scared that this is coming back. I had been feeling so much better. I was working in my yard, and cleaning the house and generally feeling really good and just dread thinking that all of that fatigue will come back with this and I won't be able to do what I want to do. Thanks in advance for your thoughts...

     
    Old 05-03-2014, 12:34 PM   #26
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    Re: How to proceed...

    Mal2014,
    You asked is it normal for symptoms to dissappear and then reappear with MS. The answer is different for everyone. Ive had the exact same symptoms for 9 years, however, seasonally, they are worse and during those times, Im more aware of it.
    Now, with shingles, which is a virus, the symptoms you describe are actually textbook. Ive heard so many people who have had shingles say the same thing you are saying....and the pain which remains after the worst of it is over, can be debilitating....the nerve pain, especially in the feet and hands, is also exactly as you describe.
    I really dont think you have much to worry about. Of course the one thing I do disagree with, is that 65% of MSers, have lesions in their brains ONLY...and therefore, not having scanned your brain and brainstem, there could be something there to see, which you are unaware of at this time. Thats something that your doctor should be aware of, and something worth mentioning. I have over 100 lesions- not one of them is in my spine...
    And by the way, an artifact is just as Jayhawk stated, but it can also be a shadow on the film, caused by moving, breathing, or malfunctioning of the machine (kind of a hiccup). Anything can cause an artifact, but what you need to know is that it is not medical.
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    Old 05-03-2014, 12:50 PM   #27
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    Re: How to proceed...

    Thank you so much for the reply. Are you suggesting that not being able to move my foot/toe could be from the shingles? I guess I am surprised as I had never heard that before. I actually have zero pain in my foot, I've just lost the ability to move it correctly. The pins and needles feels like my foot is asleep, annoying but not painful. Thank you again.

     
    Old 05-03-2014, 01:14 PM   #28
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    Re: How to proceed...

    Yes Mal, nerve pain can cause immobility in your foot from shingles...this is not uncommon.
    Im sorry you are going through so much. I hope you feel better soon.
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    Old 05-03-2014, 02:12 PM   #29
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    Re: How to proceed...

    mal2014,

    Recurring symptoms do indeed follow MSers. As Nikki shared, shingles can affect you. You can see a GP regarding your shingles. As the Shingles cause trauma, you might experience recurring symptoms from MS based upon the stress/trauma of the shingles.

    I hope you feel better soon!
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    Old 08-09-2014, 03:56 PM   #30
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    Re: How to proceed...

    I'm back. i had been trying not to visit this site for a while as I felt as if I was focusing too much energy on what could be wrong. Over the last 5 months I have had a few minor issues with my foot, but it always resolved in a day or two, usually it would happen when I had over did it. Other than that I had been feeling pretty good.

    Had my first migraine (i think) last weekend. I was out looking at little shops, and realized that I had this blank spot in my vision and kept seeing these zig zag lines to the side of the blank spot. I thought I was going nuts....After about 10 minutes I said something to my sister, I thought I needed to go to the hospital, I had never experienced something like this before. She said that it sounded like the aura she would see before she got a migraine. She suggested that I go get my sunglasses, I did and the visual weirdness went away after about 20 minutes. Then the headache behind my right eye started. The pain went away by that evening, but left me completely drained and for that night I had right sided weakness. I felt much better the next day. I wrote my ms specialist an email and she said that it sounded like a migraine. She scheduled me to come in the beginning of next month.

    Fast forward to yesterday, I could feel my foot starting to act up again, my right leg felt weak. Woke up today and can barely move my foot again. My right arm is weak and I have been getting pins and needles, shocks and twitches all day on my right side mainly. To top it off the inside of my mouth on the right is numb, I can not feel hot or cold and I keep getting pain in my face and it feels heavy on the right, but looks normal. I've gone to the bathroom about 8 times today. Twice it has been within 20 minutes of already going before. Have hardly made it off the couch today.....much to do, but I am not up to it. It is really difficult to have these symptoms, but not have a name or reason to put to it. I guess I will just wait until my appt, but thought I would come by and check things out here!

    Oh finally got a name for my foot issue.... In my email to the specialist, the on-call dr wrote "Pt with history of foot drop.....", to my specialist in the forwarded message... so I guess that is my foot thing..... Finally one name to put to a symptom lol.

     
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