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  • is it MS? Yes, No, I don't know what to think

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    Old 07-10-2013, 05:44 PM   #1
    IamNotNutz
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    is it MS? Yes, No, I don't know what to think

    WARNING THIS IS LONG
    Hello all,
    First post here as I don't know what the heck is going on with me. Here is a little run down of what I've been dealing with. In the past, for years, Off and on I would get tingling, numb sensation in my hand and fingers at different times. They would normally just last about 24-72 hours. Then one time back in 2001 I do believe, my right arm felt numb, tingly all the way down to my fingers and at times would feel pins and needles, that lasted about a week. I went to my GP and he referred me to a neurologist who looked at my physical exam and deemed it as carpal tunnel syndrome. So since I just took it as that.

    Now fast forward a few years (in between I did experience some other minor symptoms)
    Prior to 2004 and up to 2009
    Experienced off and on dizziness, weakness and feeling as though I’m on an elevator. Went to the doctor a few times and was told maybe temporarily low blood pressure since all blood work came back normal. Suggested that I eat something salty like chips. That never helped.

    Odd few times I got tingling, numbness, pins and needles through arms down to hands, same as for the legs but never at the same time. Right arm and hand lasted about a week one time about the year 2000 – 2001? Went to the doctor for it, he sent me to a Neurologist. Neurologist tells me its carpal tunnel but when asked if I had that in my left arm too, I got “Could be” response. No tests were done except for typical reflex on the hands. That would be the longest I ever experienced any of those feelings at one time in the past. When ever I felt that in my legs and feet I just assume it would be the position I’m sitting in but changing position never relieved it. That would last anywhere between 1 – 3 days.
    o Summer 2004
    Started having pains in and around the eyes, thought it was sinuses so went to doctor. He says possible migraine gives me imitrex. Later that day it got so bad my whole head was pounding and face went numb. Made it to the ER they did CT scan and found nothing, gave me pain meds and sent me on home. Then woke up one night in December of 2006 with the worse sharp, stabbing pain in my right eye that I have ever felt. Nothing helped with that but time.Starting in 2007 my head would start hurting around the back of my head behind my ear and would feel like it was going numb in that area. Had that happen three times between 2007 and 2010. All three times lasted about a week.

    2009 (about a month after having baby) make it back to dr for some bad dizzy spells and extreme weakness. Was told everything, blood work etc. looked fine and was once again told it was possibly temporarily low blood pressure.

    In 2010 right arm would start feeling numb and tingling again all the way down to my fingers. Happened two times that lasted about a week and had my left hand and fingers do the same at a separate time. I just figured it was carpal tunnel syndrome so I never seen a doctor for it.

    o 2011 – 2013
    In 2011 the headaches, dizziness started back but more frequently and starting to last longer. I would seem to get more like an elevator effect then just being dizzy and sometimes have an earache with it. Three different times legs and feet (alternating) would be weak feeling, tingling and feeling as though they were falling asleep. That would last about a day to two days each time.

    Between 2011 – 2012, four times would feel some pain radiating from shoulder to fingers while feeling weakness in arms and tingling in hand and fingers. One of the 4 times both sides at the same time with right hand having pins and needles feeling.

    In 2012 my right foot cramped so bad I couldn’t drive or walk for a full day and a half. After cramping let up my foot started tingling and leg was weak and wobbly feeling. One day while this was going on I got out of the car to walk into the house and my whole leg felt like jello to the point that I couldn’t walk normal, had to actually use my hand to lift it a few times in order to get to the other side of the driveway.

    Same headaches around the eyes, back of head, that would leave me feeling numb in the back of the head. This would last up to a week and occurred quite often. Sharp pains in through the eyes (different eye each headache)
    o 2013
    In January I noticed my right wasn’t always on track with my left eye as well as feeling like it was fogged over. Noticed it was harder to see clearly (Had pain in that eye for about a week off during that time) so I had a normal quick eye exam and was giving a stronger prescription. Eventually my eye seemed to clear up and then back in April my eye did the same thing again but noticed for a week prior my eyelid would twitch uncontrollably and once again seem to be back on track for a few weeks.

    April 2013 the back of my neck started hurting, almost like a pulled muscle, then started radiating up to the back of my neck ( around the back, right side of skull) and up into my eye. I started feeling a numbness, tingling feeling at the back of my head that seemed to extend up and around my ear. Eventually after a week I started feeling that same numbness and tingling around the whole right side of the back of my head and extended to the right side of my face from forehead down to chin. By April 30th seen my FP and he noticed that my right eye once again was not on track with my left and noted that I didn’t have full sensation of the right side of my face. He referred me to neurologist. By the time I went to neuro on May 9th my right arm started feeling weak and my hand a little numb and tingly. He prescribes Imitrex and schedules me for an MRI of brain with and without contrast not telling me what he thought it was or was looking for. MRI was done on May 15th.

    By May 17th my right leg was feeling weak and wobbly then progressed to tingling and numb. May 20th I noticed my arm and face was back to normal but not my leg and was still having dull aching in the back of head and down my neck. The tingling and numbness started down to my foot and toes. 2 weeks in (still feeling tingling, numbness), my leg from the top of the back of thigh (not sure the exact term for it) all the way down to toes would feel like a muscle was pulled. Top of thigh (front) was really weak.

    May 27th neck and head started hurting worse so I broke down and took an imitrex around 9pm. By 10pm my head felt like it was going to explode and sharp shooting pains in both eyes. That lasted all night and finally let up by noon the next day.

    June 19th my right foot started having pins and needles bad enough it made it very uncomfortable that lasted 2 days then back to tingling. June 20th just to the left of spine close to the shoulder blade, I felt tingling that lasted just over 24 hours. By June 21st everything was back to normal again.

    June 25th after being outside in the heat for a party my right leg started feeling weak again and lasted until the next day.

    June 27th was follow up with Neurologist. The nurse went through normal vitals and asking questions of medication and I mentioned to her how I wasn’t taking the imitrex again after Memorial Day incident. When the Dr. came in his first words to me were about me not taking the imitrex again. I explained to him why then he proceeds to tell me my MRI was normal but I have a right to a 2nd, 3rd or even a 4th opinion if I don’t like what he has to say. I asked him what he thought was causing everything and he suggests it might be migraine so I asked if after my face and arm went back to normal and with no headache would the migraine cause my leg to do what it did and he tells me its highly unlikely. He then tells me the only thing he could think of is possibly Allydonia (which was said sarcastically but letting me know he didn’t expect me know what that was). I then asked what was that and when he explained to me about the pain associated with it, it did not fit what I was experiencing.
    He says to me that he doesn’t know what else to tell me and to get my other multiple opinions

    July 7th right leg, foot and toes are tingling and numbness can be felt. (I am starting to wonder if it even went away at all, maybe just didn’t notice it as much with me keeping busy)
    Evening of July 8th left fingers and hand start feeling numb and tingly. July 9th tingling radiates from fingers up arm to mainly elbow. Top of right leg seems to feel weak. Nerve jumping on right lower leg. (side of calf?)

    I do apologize for the length of this post I just don't know how much more of the not knowing I can take.

    Thank you in advance for any replies

     
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    Old 07-10-2013, 06:13 PM   #2
    MSNik
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    Re: is it MS? Yes, No, I don't know what to think

    Hi IamNotNutz,

    No, you arent nuts....and welcome to healthboards!

    What you are describing, isnt Multiple Sclerosis- but it could possibly be neurological in nature. The doctor you are seeing, isnt doing you any good, because he isnt ordering tests to rule things out. Starting with a MRI of the brain and Cspine, which would tell alot more than the CT scan showed.....

    MS presents like 400+ other illnesses/ diseases, but one thing almost all MSers have in common is that nothing goes away in a few days or randomly shifts from one part of the body to another.....your symptoms seem to be all over- and even what you describe in your eyes/ head, actually does sound like migrane pain. MS pain in the eyes is completely different; and would be picked up because it wouldnt just be pain, but distinct vision problems which would definatly have you running for an eye doctor. Optical Neuritis is sometimes associated with MS- not in every case- but in many- and what you are describing isnt optical neuritis either.

    I do think you need some direction and Im going to suggest to you that you change Neurologists quickly and beg to have the correct tests run- and go from there. If I thought it sounded like MS, Id direct you to a MS specialist, a neurologist with extensive MS training, but I honestly dont hear anything here which sounds MS like. I think a really good general neurologist might be able to direct you just as easily, if he orders the correct tests.

    You may have many different things going on....you could have Fibromyalgia, which is extensive nerve pain; but you are also complaining of muscle weakness (another sign this isnt MS)- your headaches and eye pain may very well be associated with your eyes- when is the last time you were seen by a really good opthamologist (not an optomotrist)? You might look into that too.

    Im sorry Im not being a whole lot of help, but the one thing I can definately tell you is find a new doctor and get another opinion . Youre going to keep going in circles with this one apparently.

    I hope you feel better soon.
    nikki
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    Old 07-10-2013, 06:26 PM   #3
    IamNotNutz
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    Re: is it MS? Yes, No, I don't know what to think

    Thank you for your quick reply.
    Its not that the symptoms are jumping all over to the point one day this is here and the next its gone with another area affected its more like the past few months these last episodes that lasts more than a month have piggy backed each other. mainly on the right side of my body. as of tonight now that my face and right arm seems to be clear somewhat considering I dealt with that for well over a month, my right leg is still the tingling numb feeling. And YES I am going to see another Neurologist on August 1st. As a matter of fact this one is probably going to give me a lecture because he is my husband's that has seen him since birth, and will ask me why I didn't go to him first. The weakness in my leg is more like a feeling as though you've worked out on a bicycle for hours and then get off (kind of like a buzzing feeling). Its bothersome and I really wish it would stop.

     
    Old 07-10-2013, 06:32 PM   #4
    MSJayhawk
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    Re: is it MS? Yes, No, I don't know what to think

    IamNotNutz,

    Welcome. No you are not nuts. I agree that it does not stand out as MS, but you certainly have something happening. You need to see a new doctor who can help you sort through things. A new set of testing would likely sort things out quicker. I would also encourage you to seek an MS Specialist too because of the number of mimicries possible and as the MS Specialist eliminates things you do not have, you may be referred to another specialist based upon a specific test. There are over 400 mimicries and your problem may have been simply overlooked.

    Again, Thanks for sharing your information. You have a lot of information. I would summarize it a bit more and then give it to your new doctor.
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    Old 07-11-2013, 04:55 AM   #5
    MSNik
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    Re: is it MS? Yes, No, I don't know what to think

    I am very happy to hear you have an appointment right around the corner. Best of luck to you at this one and hopefully this doctor will give you some insight and point your towards the correct testing to get you a diagnosis.
    I still truly do not feel this is MS in nature - so please do not focus on that thought- but I agree something isnt right. IT could be as simple as a pinched nerve or Fibro; but whatever it is, the right tests will get you going in the right direction.
    I hope you have pain-free days ahead.
    NIkki
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