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My never ending story

Jan 25, 2012 - 9 comments

It all started with a tingling/numb big toe, and then slowly spred to all the other toes and to the other foot and at the same time I had strange pain all around in the legs. My left is though always worse.

This was happening from June 2010, but in Nov 2010 I also started to feel simular pain in my hands/arms but dit not think it was related at first, because there were no tingling and I thought the stuff with my feet must be related to backproblems. So for a long time Nov2010-Mar2011 I just would not think of it. But in Mar I did get the first tingling/numb feeling in two fingers on the left side, and my feet had been getting worse, now I was numb to the ankle. Then soon it were all the fingers on that side and so it started on the other side and the palms too, but it is not as bad though.

Soon after this I got tingling on the left side of the face, lips and then got strange pain just above my right eye one day and few days later beside my nose (right side) and then under my chin (right side). So tingling on left side and nervepain on right side.

Then I decided to go see a neuro, he sent me to MRI of the neck and then of the head, the neck showed nothing and the head MRI only showed a little bright changes in the periventrucular area, but neuro said it was just normal „could be my age“ (43 then). That summer (2011) I started having  more symptoms, fasciculations, some kind of chills in strange places, like over my head and wider.

Also many times I have had a very high tone in one ear, and when I was typing one day, my hand fell down like I lost control of it. I think compairing with many other peoble, like you all, that my symptoms is maby not very bad, they are still „mild“, but my tingling/numbness is always there and worse somedays and they‘re all over, but still the pain is not interupting me too much.

My EMG was ok, my balance is ok and I think my eyes are normal (trouble focusing sometimes, but that must be the age). We have been looking into many thing's, like polyneuropathy, B12 is ok.

Food goes the wrong way sometimes, also just the water in my mouth (don't know the english word) going the wrong way and me then couching? Was eating some little candy gum (?) one day and it often feels like the upper part of my neck is tight, and one got stuck like where the tongue ends for awhile?

I‘ve had the urine leaking for more than a week one time. Sometimes it I feel painful cramping in the stomack area like the intestines are turning and twisting. My right arm is heavy and week very often.

I also get muscle twitching all around, and I get this in my face and on the top of my head!! But this is not painful, just unconfortable. I have  had painful muscle cramps more now lately. Also strange symptoms like my tongue was like burned on the tip for a whole month, and like a spider on my ear for some weeks, twiching left side of lips for weeks, strange dizziness for two weeks in Dec and then again nearly two weeks in Jan. The first dizziness felt like my brain was  small in my head and not following my eyes, like it was going in very small circles, then the second one fellt like big circles?

Today I‘m just having myoclonus in my left thumb (since yesterday) and all the regular stuff. I sometimes feel like I could be having many of the typical cognitive issues and the fatique, but that is something that is easy to think that I am just imagining, so I sometimes just think I am getting a little crazy ;).  All my testing for other stuff has been ok.  

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667078 tn?1316000935
by HVAC, Jan 25, 2012
Something is going on. Its real.


1689801 tn?1333983316
by Dagun, Jan 25, 2012
Thank you Alex for not thinking I am crazy, even though I am sometimes wondering :).

My best always,

Avatar universal
by Marcgrl70, Feb 01, 2012

Thank you for contacting me. Yes, it does sound like we have a lot of the same things going on. I also have the fluttering muscles, those are the amusing ones to me. It's amazing the relief I am feeling right now having someone say " you are not the only one."  Yes, I have read many posts that are similar but I was floored when you mentioned having 'Chills'.


1689801 tn?1333983316
by Dagun, Feb 01, 2012
Thank you for reading :). I myself like to hear others stories to see how like and unlike symptoms can be. Sometimes we don't even have the imagination to think that some strange small things can be a part of all of this, like the chills. I also have had more of funny stuff like 1-3 strange hiccups in a row on and off, some have a theory that this is do to a muscle cramp or something inside. And yes we are sure not alone in this.

My best,

Avatar universal
It is not your imagination these changes are taken place and we know our bodys ...I feel the tingling the numbness in fingers and toes and creepy crawly bugs through my head and face the blurred vision loss for words the feeling of being confused or concentrate on where i was going or doing..I repeat my self my family says when I have a question because i dont remember that I asked it... the So many of the things you have written feels like what I have been feeling and saying since 2007 the week I came home from the hospital after giving birth to my son. Each month a little worse each episode a little longer...Most of the time my family is afraid to hug me hello or good by because they dont want to hurt me. These symptoms are not all every day they are diffrent everyday. But everyday I hurt somewhere Depends on which DISEASE DISORDER IS STRONGER THAT DAY...THE MS the FYBROMYALGIA or the SPINE AND CERVICAL DISEASE. I just cant not find the proper Doctor to treat me. I am at a loss. I am falling apart limb by limb and so is my family and my house and my financial being because of me....I pray every night but no one has a magic pill for me or all the answers on how to put every thing back together...I feel so hopeless and useless.

I use to be a person who loved to entertain with family and friends 4 to 5 nights a week. large gathering on weekends. I had pride in a clean beautiful home with things in order. Even after a 40 hour work week in sales and having a part time job at night working retail at the mall. I was the football mom the soccer mom and the assistant to the cub scout leader

I was a strong person inside and out. I required 6 hours sleep and was always functional. My grandmother and mother always said sleep is for the weak and the dead. We are neither so keep it moving.....These days I look in the mirro and dont know how this happened. I dont like what I am becoming..NEEDY AND USELESS AND CUMBERSOME TO MY SELF AND OTHERS...I AM WEAK INSIDE AND OUT...

1689801 tn?1333983316
by Dagun, Mar 28, 2012
I am SO sorry for your pain and everything going on, it is awful how this can change our lives. I sure hope you will find a doctor that can help you.

My best,

Avatar universal
by Hilary1966, May 14, 2012
Hi there,
Sorry to hear you are having such a bad time.I too was suffering with symptoms of numbness and was told five years back that it was all in my head or somotoform disorder.However in January of this year I got a numbness that started in my saddle area and travelled all over very quickly,I was reluctant to go to my gp incase he told me I was imagining it,and had lots of alternative treatment before finally given in and making an appointment to see a professional.My news was that I had scarring on my torso scan mylitis of the spinal cord which probably was misdiagnosed five years earlier,so to make a long story short I have mild ms which has just reared it's ugly head for a second time.However there is a slight chance it could be devics disease a  blood test can determine if this is the case but it amazes me that many of the medical doctors have never heard of it,luckily my neurologist is very experienced and has suggested that an neuro mylitis optica antibodies test be carried out just to rule this condition out.So maybe it might be worth your while to have this blood test done also it's NMO antibodies possibly better to arrange to have it done in a hospital as the sample needs to be refrigerated immediately.Best of luck,

Avatar universal
by Abbeystead, May 27, 2012
Dagun.have just looked up your details i.e. where you were writing from, hope you dont mind. Read your problems and thats exactly the way I feel = tingling etc. Just thought I'd let you know you're not alone. Only those who experience it know. As I said before will let your know what Neuro says.
Avril, Liverpool.

1689801 tn?1333983316
by Dagun, May 27, 2012
Hi Avril, no I dont mind, it is often so good to compare so that what this journal is about for me :).

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