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Multiple Sclerosis Message Board


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Hi Everyone,

I have been a lurker here for quite a while, but this is my first post (sorry in advance for the length) to the MS board. So, let me start off by telling you that I am a 41 year old female. I had mono when I was 10 and was out of school for six weeks. I also contracted the chicken pox at the age of 21 and again was very sick for six weeks. I believe that really knocked my immune system down more than a few pegs. Since then I have exhibited several neurological signs of MS but have yet to seek professional help. There have been many reasons for this, some excuses more valid that others; however, I have recently been subjected to one symptom that may now force me to face these issues head on. My ophthalmologist scheduled my first MRI of the brain this last Wednesday after I complained of suffering with diplopia since April. I thought it was likely a side effect of a new sleeping medication I started taking around that time. The doctor didn't seem so sure. I should get the results on Friday.

I have done quite a bit of research on MS just to learn what I can (especially when it comes to the symptoms). My problem is that I have most of the main symptoms you can find on the internet, but I also noticed a few other strange neurological things that I can find very little about. I am hoping some of you here can tell me if you have experienced these things too:


1. One of the absolute worst, debilitating, and mortifying issues I deal with is my poor handwriting. It used to flow smoothly and appear appealing to the eye. It is now awful. Downright horrendous. It looks like the scribble of a two year old. I have essential tremors in my hands, but this isn't just shaky handwriting, it's very jerky. It's like I've totally lost control of how to guide a pen. I've tried angling and holding the pen differently but nothing helps. Now, in order to write legibly I must write very slow, hover my face over the paper, and keep my elbow on the writing surface. It's very labor intensive and becomes painful in my hand and arm after a very short time and I frequently end up dropping the pen as it simply flips out of my fingers. It's humiliating all the way around.

2. Episodes of buzzing sensations perfectly akin to that of a cell phone vibrating. In fact, my automatic response is to reach for that area looking for my phone. This happens all over my body-- soles of feet, torso, butt, extremities, and scalp. I haven't experienced this in about a year, but during the episodes the buzzing would happen many times a day.

3. (This one is more for the women, I guess) When walking down a set of stairs in high heels I can't just place my foot flat on the next step below. I have to kick my foot out before placing it where it should be. This slows me down quite a bit so I will avoid walking down any stairs when I can. The only people I have ever seen do this are women wearing long, flowy gowns who need to kick out the hem to ensure they don't trip over the front of the gown.

4. Fear of escalators. Hate, hate, hate them! Regardless of whether it's long or short, once I get near the end I get extremely unsteady and feel like I'm going to fall backwards (both going up as well as down). My friends think I'm nuts for this!

5. I also get sensations of a magnetic pull in my toes that feels like it's pulling them out and away from my body. I can actually feel this a little in the balls of my feet as well, but it's mostly concentrated in the toes. It can be just one toe or all of them. A lot of times I feel like my big toe is trying to separate from the others and the sensation originates in a callous under the big toe.

6. An extreme sensation on my toes only at night (usually starts when I am in bed). It's almost hard for me to describe this sensation. It's so extreme I can't tell if they feel frozen to the point of pain or if they are burning like they're on fire. They don't feel particularly hot or cold to the touch, but at that point it's so painful that even a silky sheet brushing over them causes much pain and will keep me awake.

7. A feeling of tight rubber bands wrapped around my legs just underneath the knees. My lower legs then become very tingly and my feet sometimes appear swollen too. Also, I've experienced something similar on my arms, but the bands are not as tight.

8. Parts of my body feel like they are in motion when they remain perfectly still. Not sure how to elaborate further on this one. But, it can certainly be an unsettling feeling.

9. Whenever I have the urge to curl my toes, such as when getting a full pedicure, my toes will curl down normally on my right foot but the ones on my left foot will will reach upward and spread. My left foot will do the complete opposite of the right. Is that just too weird??!!


Well, those are the ones I can come up with for now. I'm sure I will think of a few more the minute I hit the submit button. If anyone has experienced these or any other strange/odd occurrences or sensations, I would really be interested in hearing about them and if they have found any ways of easing the discomfort.

Also, any advice anyone might have for me as I begin my search for a diagnosis would be greatly appreciated.

Thank you!
First of all, you need to take these results of your MRI to a MS Specialist- do not see a regular Neurologist. They are not the same. Most neurologists specialize in migranes, strokes, Parkinson's Disease- very few have MS training. SO, find a MS specialist and make an appt now, they can take months to get in to see....youll take a copy of your films (go back to where you had the MRI done, and ask for a CD or films) with you. You dont need the report. MS Specialists do not rely on radiologists reports- they read their own films.

Secondly, some of what you describe could be MS - but please keep in mind that there are over 400 diseases and conditions which mimic MS. That means your chances of having MS are 1:400. So many things mimic it, that a whole host of testing needs to be done. As there is no one test for MS- the MRI is the place to start. They should be imaging your brain, optic nerve and Cspine to begin with.

I have some of the symptoms you described. I cant handle escalators- the moving parts throw off my balance and I tilt either backwards or forwards. I only get on one if my husband is next to me, holding me...I have the numbness which feels like burning in my left hand and fingers- this was my onset symptom and now, 11 years later, it still hurts most of the time. I guess Ive gotten used to it. Changes in the weather, from hot to cold or cold to hot, really make it hurt. Ive heard many a MSer complain of feeling a buzzing, like a cell phone...this is not uncommon.

The feeling of movement, when you arent moving, the poor handwriting, the feeling in your toes, the walking and kicking your feet out, even the feeling of rubber bands in your legs- NONE of those are MS related...actually those can be caused by a stroke and other neurological disorders; however no two cases of MS are exactly alike...its a snowflake disease- meaning that no two cases have ever been documented exactly the same, so it is possible that they could be MS symptoms for you...although they certainly wouldnt be common symptoms. Youll need the MS specialist to start putting you through the required tests...the great thing about an MS specialist is that they have seen it all, heard it all, nothing surprises them, and they dont write anything off as being "crazy or unheard of". They will also send you to the correct place once they get a handle on what is going on if it is not MS.

Im sorry you are feeling so poorly. Its never fun knowing something is wrong but not knowing what it is...but your lucky that your opthamologist recognized the symptoms as being neurological and got the ball rolling...unfortunately, he is not trained to read a film and at this point will be relying completely on the MRI report from the radiologist, which is a really bad idea. You need someone to read those films who truly knows what to look for...

So, look into large teaching hospitals, they usually have MS specialists- call your insurance company looking for names- call the local MS society in your town to ask for names and you can always shout out here, and ask if anyone lives in your city and if they recommend anyone. But, find one- and start the ball rolling...at the very least, youll want to take the films to your first appt where the doctor can decide if MS is worth considering.

Good luck!
heidi,

:wave: Welcome to the discussion side. Many choose to lurk and learn :) I am glad you chose to ask.

There are over 400 known MS mimicries. An MS diagnosis cannot be reached through a single test. It is a process of eliminating everything possible. During the course of elimination, the mimicry might be identified. If all mimicries have been eliminated, then the MS Specialist would review your situation with the Revised McDonald Criteria. If you meet the criteria, then you would be diagnosed with MS.

Knowing that your concerns are in the neurological realm of medicine, you will have eliminated the blood borne MS mimicries already (or should have) if Lyme and Vitamin B and D deficiencies have been eliminated too.

As to symptoms, statistically there are percentages in play, but these are averages. For example 20% of MSers will experience ON. 5% may experience seizures. I have had MS since I was 14 yo at least. I did not experience ON until 2002 (25 years into the disease) and later seizures. While there are statistics as to symptoms, the percentages change as more data is accumulated.

As to your questions:
1. One of the absolute worst, debilitating, and mortifying issues I deal with is my poor handwriting. It used to flow smoothly and appear appealing to the eye.............

----------Hand coordination can be neurological. My handwriting was never good. My 3rd grade writing teacher told me to study hard and be a doctor. :D I type or print and use a "fat pen" and hold it in a way that suits me on the given day. While at the university I lost the use of my right hand and arm for about 6 months and learned to use my left hand, though never good. I learned to crochet which helped me rehabilitate my coordination. Try different pens with different thicknesses and grips. There is no need to feel humiliated for trying.

2. Episodes of buzzing sensations perfectly akin to that of a cell phone vibrating. In fact, my automatic response is to reach for that area looking for my phone. This happens all over my body-- soles of feet, torso, butt, extremities, and scalp. I haven't experienced this in about a year, but during the episodes the buzzing would happen many times a day.

----------This I have. I have moved my cell phone to the pockets wherein I have the least buzzing, but I still miss phone calls. You might find you have some triggers,but it may not have a trigger. I have simply accepted it as normal and ignore the buzzing.

3. (This one is more for the women, I guess) When walking down a set of stairs in high heels I can't just place my foot flat on the next step below. I have to kick my foot out before placing it where it should be. This slows me down quite a bit so I will avoid walking down any stairs when I can. The only people I have ever seen do this are women wearing long, flowy gowns who need to kick out the hem to ensure they don't trip over the front of the gown.

----------- Well, never wore high heels nor a gown :D You might be experiencing foot drop. For me, this started as one of my first symptoms. For me it was falling up the stairs more than descent. This was where my MS Specialist did a forensic look at my case. I had a pair of shoes which I had when I was 14 which were still in a closet. The toes were scuffed on my left shoe and it was a sign of foot drop. For me this was my objective evidence to age of onset. You might check your shoes, toes and soles for any abnormal patterns.

4. Fear of escalators. Hate, hate, hate them! Regardless of whether it's long or short, once I get near the end I get extremely unsteady and feel like I'm going to fall backwards (both going up as well as down). My friends think I'm nuts for this!

---------You are not nuts. As my MS has worsened, my ability to do anything above the rung of a ladder has affected me. Given that most escalators are open for the view, you might have a reasonable concern. I have the same problem with the glass elevators and will keep my back to the view.

5. I also get sensations of a magnetic pull in my toes that feels like it's pulling them out and away from my body. I can actually feel this a little in the balls of my feet as well, but it's mostly concentrated in the toes. It can be just one toe or all of them. A lot of times I feel like my big toe is trying to separate from the others and the sensation originates in a callous under the big toe.

-------- On this matter I am not sure. It could be related to your muscle reflexes, type of shoe, etc.

6. An extreme sensation on my toes only at night (usually starts when I am in bed). It's almost hard for me to describe this sensation. It's so extreme I can't tell if they feel frozen to the point of pain or if they are burning like they're on fire. They don't feel particularly hot or cold to the touch, but at that point it's so painful that even a silky sheet brushing over them causes much pain and will keep me awake.

----------I can somewhat relate to this. In the summer I sleep with my legs from my thigh to my toes uncovered. I sleep much better. In the winter I will cover my feet with a pair of socks when I sleep. I have temperature triggers also which I need to battle. You might also try a cold soak of your feet.

7. A feeling of tight rubber bands wrapped around my legs just underneath the knees. My lower legs then become very tingly and my feet sometimes appear swollen too. Also, I've experienced something similar on my arms, but the bands are not as tight.

---------Likely a muscle spasm

8. Parts of my body feel like they are in motion when they remain perfectly still. Not sure how to elaborate further on this one. But, it can certainly be an unsettling feeling.

--------Not sure about this one, but our minds can be overworking and this symptom can present.

9. Whenever I have the urge to curl my toes, such as when getting a full pedicure, my toes will curl down normally on my right foot but the ones on my left foot will will reach upward and spread. My left foot will do the complete opposite of the right. Is that just too weird??!!
-------- This is a Babinski Reflex. This reflex is normal for a newborn because their nervous system and connections are still forming. You correctly noted that your left foot toes bend up and fan out. This can be a neurological sign that not all is normal. There are MSers who have a Babinski Reflex (I do), but not all MSers will.


Your search for a diagnosis begins with an MS Specialist. Your doctor can assist you with a referral. If you are near a university teaching hospital, they should have an MS Specialist. I drive about 2 hours each way to see mine. The distance should not matter at this stage because you want an answer and not to have to wander limbo land without a resolution. You can also check with your MS Association or Society office and they should also have a list.

You may or may not have MS, but you are cognizant of your symptoms. I would add that while you are waiting to keep a symptom journal to note onset, severity, etc. You should keep this journal after a diagnosis too. It is helpful as you do not have to remember things later. These journals are also available as apps.

Thanks for sharing. We are here to help you as best we can. I certainly hope you do not have MS, but if you do, it is not fatal, only chronic. October will be my 39th year with MS. :angel:





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