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My never ending story up to date :)

Apr 22, 2014 - 6 comments

It all started with I got tingling in the big toe of the left in June 2010. Numbness spread slowly over all the foot on that side and then, some months later, this happens also on the right. This process took about 6-8 months. As soon as this started in June then also started this strange stabbing pain (nerve pain). They were usually quick and stinging (usually a couple times in the same place ) just unlike anything I had experienced. It is fortunately rather rare now. I would think this would be called Paroxysmal symptom. My tingling is my new normal, but it is sometimes worse at some patches for awhile, like my left side is much worse than the right, and I´m often worse under my left knee and in my toes on that side.

In March 2011 I began to feel a tingling in two fingers left, then all the fingers and palm too. Few months earlier I had found that I was having nerve pain there. Some time later it happened a similar in the right hand. The left side is always noticeable worse, I also got numbness on the left side of the lower face ( like dental numbness) the face tingling got better though. But it has never been on the right side of the face. When it came in half the face then the neuro did MRI of the head and found some bright changes in the periventricular area. But thought nothing of it could be my age, he said ( I was 43).

In April 2011, I also got 3 bad nerve pain in the face on the right side . The first came in above the eye, then one beside the nose and the last at the bottom of my chin.

In July 2011 I started experiencing muscle twitch, it started in the right thigh where some muscles went crazy for a while. But before this started, I had started to get weird chills over my head on the left side. After this, the muscle twitching is fairly regular part of me, even on the skull, behind the ear and just the most incredible places but it seems to be a pattern, that when I start to get twitching in a new place, it will be crazy for a week or more and after that the place becomes "one of the places" . Now for example I have been having a new twitch since August 2013, it  was very much at first but now it occasionally, it is below the right eye, like a smile wrinkle. Once I got it on the upper lip on the right side for a certain period but that twitch seems to be gone for now.

In August 2011, there was some strange symptoms for awhile, it was as if the tongue were burned and had a fairly constant sense of a spider on my ear ( always pushing something away that was not there) . Also, I had some times word problems, meant to say little and thought it right, but I could not say it.  

At same time I was also starting to feel the swallowing problems, difficulty in controlling the pipes. It has since become more frequent, especially during certain periods (flares?) and then I swallow saliva very often the wrong way.

Tinnitus in the left ear came first for a while. And has been from time to time in the ear since. 2013 it was joined by a new highly distracting sound in the left ear (I have never had anything in the right ) but it was like someone was looking for a radio station in my ear ! But that sound has not come back .

In September 2011 I woke up from fast asleep and could not breath, coughing constantly, but was unable to breath in. It was like I could not control my muscles, and it closed the breathing tube . I was just concentrating on trying to " arrange " the right muscles . It was a terrible feeling. It happened again in the summer of 2013 at daytime, terribly scary. Now in March it happened again and then I found out that this was probably spasm the larynx. Something called Laryngospasm.

It was in September or October 2012 that I realized that I was again getting incontinence as I had also had in the summer. Then I had just found it terribly embarrassing and pushed it away. So at last I googled incontinence and tingling and found out that this could be related. This was not like a regular incontinence that occurs with sneezing , coughing, etc. It just came without feeling it until it was in my pants, not unlike being on periods. This lasted for over a week .
August 2013 my urinary problems started again, and it was much worse than before because now I totally lost it twice, had no control! So I talked to the doctor,  but it was really after I got better. Then I made a two-day report of what I drank and peed and if I leaked. Then the first day was normal but the next day I was not "returning" half of the fluid I drank, and in the evening I started leaking! Before that test, I had not noticed that I was not emptying the bladder.

2012 I had my first myoclonus in the right thumb, it came on and off for awhile. I later got a period of myoclonus on the left side, and occasional mild leg movements. This comes on and off now but most often so mild that I feel it happening but it does not get strong enough to really move the finger (toes/foot/arm).

December 2011 I felt dizzy for the first time, but it was weird and "small", it was as if the brain were very small and shaking in my head, would not be in sink with my eyes. Very strange and I could walk easily. Found it most when I looking to the sides, like reading the papers, or if something happened fast around me.

This lasted for almost 2 weeks then it was maybe 2-3 week break but then I began to feel dizzy in a larger way but not necessarily so much when I walked, just occasionally. I thought it was most noticeable when I was lying down on the pillow at night and fixed cushion by lifting my head, then it was just simply like I was in a free fall. I have since had no dizziness after these two periods.

I 've had electric feeling in my cheek and once elsewhere. Once I felt like water streams down the face on left side. Also very often my right hand get´s very heavy (tired?) and I get similar feeling in my right leg. I feel like the coordination of my right hand is not good.

I have lot of stiffness/spasticity in my muscles, and sometimes on the treadmill my right foot will not lift enough, but it is ok if I think about it and watch out. In December my forearm muscle on right hand was very tight for a week or so. I have also had a similar thing on my right shoulder blade.

It 's a while now since I realized that I had trouble remembering and is no longer able to do many things at once as before, my concentration is SO bad, reading things again and again until I get it. Sometimes I can not read the newspapers for a many days! When I 'm talking to people, sometimes I need to concentrate to keep on listening and getting what they are saying. There are many examples where I can not find the words I 'm using.

So then it´s my eyes, my feeling is that it is also something going on there. But it is mild and could probably have several explanations, so I´m not sure if it is a part of my symptoms. I had a bad ache behind the left eye, I 've been seeing blurry from time to time. But the strangest of all was when I was talking to a person and I noticed that I did not see her eye that I was looking in, there  was a gray spot in front of it, so then I looked in the other eye and the grey spot was there also. So I blinked my eyes and then it was over. It was so short time that I did not think of closing one eye and see witch of my eyes was "doing" this. It left me thinking if Paroxysmal could also happen in the eyes?

And so many other stuff have been going on....

In January 2014 I had a new MRI of my head and it showed: 15-20 T2 hyperintense lesions on EACH side (total of 30-40) periventricular, the biggest about 5mm. I put few of my MRI´s in my photo album here. But my neuro does not want to do anything more for now! I think he is just being grumpy because I was right. I had asked him to do another MRI (nearly 3 years since the last one) and I said "if my lesions are big enough to be seen they are many and small" and I was right! I just had this feeling that with my many, many rather mild symptoms, that there would be lesions all around. I think he hates that I was right, I´m now waiting for an appointment with a young lady neuro and I hope she helps me...

Thank you for reading, sorry for my English! I would love to hear your opinion :)        

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572651 tn?1530999357
by Lulu54, Apr 22, 2014
Your English continues to impress me - much better than my Icelandic!  I am impressed that you got this history recorded- it may be important to use later and now you have it in writing- well done.

I continue to say that you need that new neurologist- this one has done you no good at all over the past few years  The fact that he now can see these lesions for himself and still does not want to treat you is wrong.  what a stubborn and grumpy doc.  Keep pushing - that seems to be the only way you are going to get tretment.  And that's my opinion.

Avatar universal
by essdipity, Apr 23, 2014
Dagun, kind soul that you are, you will never get past these obstacles until you find a really competent neuro. I urge you to do whatever it takes to accomplish this, even if that means traveling elsewhere in Europe or in America. You must become your own best advocate, so assert yourself, find a way, and don't let anything interfere with your getting a real resolution. Best of luck with this as you press ahead! Hugs, ess

1689801 tn?1333983316
by Dagun, Apr 23, 2014
Thank you both, Laura and Ess, so much for your continuing warm support, it is so good to feel that I´m not so crazy, that you are here for me. I´m going to see that new neuro (a lady) the 6th of May, I´m trying not to get my hopes up and just "keep my feet on the ground". Because I think I´m just ready for a new disappointment, but hopefully I´m wrong though. I´m hoping because she is a woman, that I will feel more comfortable talking to her.
Thank you SO much,

5887915 tn?1383378780
by karryon55, Apr 24, 2014
Hi Dagun, I really hope your Neuro appt for the 6th May goes well for you. I agree a lady may be easier to talk to & anyone has to be more helpful than who you have been seeing up until now. That amount of lesions is not normal for your age group or any age group really. I swear some of these Neuro's get these stupid comments from Christmas crackers and maybe we should come out with some goods answers ourselves. Please keep us updated. Hugs, Karry.

739070 tn?1338603402
by rendean, Apr 26, 2014
Dear Dagun,

First your English is impressive!! Second, keep fighting for your self so that you can get treatment! You are one smart lady and deserve the best!

Don't forget that many of us have seen multiple neuros before we received a diagnosis! Keep pushing for what you feel is right! Ess said it best , "You must become your own best advocate, so assert yourself, find a way, and don't let anything interfere with your getting a real resolution."  follow her sage advice!!

Ask the new neuro what that smudge or patchy looking area is in the corpus collosum. It , too, MAY be an ill-defined lesion. That is very similar to what mine looked like initially.

I wish well and good luck on the 6th of May with your new neurologist!! I hope this neuro does something positive for you and starts treatment!!


1689801 tn?1333983316
by Dagun, Apr 27, 2014
Thank you so much, dear Ren and Karry, for your support here! It is SO wonderful to feel that people don´t think I´m crazy with all those crazy symptoms and "dots" decorating my brain :-)

If you can see a possible lesion on my corpus callosum, Ren, then how much more could there be in different places? I have more pictures in my photo folder of some of the other lesions. But it seems to me, that because all the lesions that we see clearly are "just" in the periventricular area, that is why these lesions could be non-specific? But my point to my new neuro would be that I think, I have so many small ones, that there are many left to be seen. This was with 1,5 machine not 3. And also my spine MRI where they did not see any. I know Quix had a lesions on her spine that did not show until with 3 tesla.

I have been looking and educating my self on a radilogist page, and comparing with their explanation, I would think I am seeing a juxtacortical lesions also on my MRI. But of course I´m no specialist!

I will be well prepared for meeting my new neuro and I SO hope that she will take the time to look at my MRI´s her self and give me a thorough check. I will tell her to take a good look at the corpus callosum. Thank you SO much!


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