Tag Archives: Tingling

The bed feels sooooo good in the morning with my MS

I’m not sure if any other MS inflicted have experienced this…..

Going to bed at night is sometimes an uncomfortable experience.  For me it’s a combination of two things; my neck and my leg.  Somehow, I developed arthritis in my neck.  It tends to get more sore as the day goes on.  My leg on the other hand, still has the original tingling, in varying intensity.

Adding the two together means that some nights, I am laying in bed trying to fall asleep while my neck is in pain and my thigh feels like micro fireworks are going off in it.  Not the most conducive to drifting away into dreamland.

The morning though is an entirely different story.  By then, my neck feels good.  And oddly, the tingling is very gentle and slight.  It actually feels good.  Really good.  Kind of like the sensation you feel when stretching or even getting massaged.

I’ve always been bad about repeatedly hitting the snooze button.  This isn’t making that habit any easier to break.  Luckily the little ones ensure that I don’t get to enjoy it for too long in the mornings.  What will I do to get up when they become teenagers though?

To Ampyra or not to Ampyra?

Multiple sclerosis medications fall into two general buckets.  The first, which is the type which gets most of the attention, are known as disease modifying drugs (DMD’s) or disease modifying therapies (DMT’s).  These drugs aim to slow down the progression of the disease but do not directly treat any of the symptoms.

The second group does the exact opposite.  They do nothing to change the course of the disease but they try to treat a particular symptom that the patient may be experiencing.  Examples include steroids to help speed up someone getting through a flareup or Viagara if the individual has lost the ability to perform sexually.

Luckily to date, I have not had to use any drugs of the second group.  However, one of these drugs, Ampyra, has come up numerous times in conversations with my neurologist.  Ampyra aims to help damaged nerves function better.  When your immune system attacks the myelin coating on the nerve cells, potassium leaks out.  The ampyra somehow blocks this, enabling better transmission of the signals.

Unfortunately, Ampyra only seems to work for 35%-40% of the patients that take it.  We decided to try it and see if I am part of that lucky group.

Looking online you will see user reviews that are either 1 star or 5 stars with little in between.  If it works, it is miraculous.  People write of going from a wheelchair to a walker to a cane.  But for most people, it does nothing at all.  My neurologist said that it seems to work best on patients that are really affected by heat.  Fortunately or unfortunately, that is not me.

The producers of Ampyra say that it can take up to six weeks to work.  They provide you with a two month trial dose free of charge to try and see.  My Doctor however says that if it is going to work, you should start to notice improvement within days.

So what could be the downside of trying it and seeing if it works?

First is cost.  It’s something around $1000 per month.  Luckily I have pretty good insurance so that wasn’t an issue.

The second is that this is not aspirin.  The chemical in the drug is also used as bird poisson.  It can cause some serious side effects including seizures.  The chance of seizures goes up considerably if you take more than the recommended dose.  The pill is taken twice a day, no less than 12 hours apart.  I found this part to be somewhat stressful.  What started as 8am and 8pm then became 9 and 9, 10 and 10, etc as I forgot to take the pill at the exact time.  Eventually I was having to stay up to take the dose or just skip one and start the cycle over again early the next morning.

Six weeks into the Ampyra I developed my first new symptom in a couple of years.  My disability in my left leg originally started as an odd tingling sensation in my thigh.  I woke up one morning with an identical tingling now in my right thigh.

My neurologist said that it is impossible to know if the Ampyra caused the new tingling.  However, at six weeks and no noticeable benefit coming from the drug, she had me stop taking it.

While I wish that I could have been part of the third that finds it to be a miracle drug, I have to admit that being on it made me a little nervous and dropping it was something of a relief.

What the heck is a demyelinating disease?

The case of the mysterious tingling leg solved….

My EKG was fine.  My EMG was fine.  A blood test showed that my cholesterol was starting to creep up, but basically it was fine.  I went back to my doctor with the expectation that the MRI that I had just had of my neck would also show that everything was fine.  I expected a continuation of the unsolved mystery of my tingling leg.

Except that it wasn’t fine.  The MRI revealed two problems.  Somehow I had developed arthritis in my neck and the second had to do with my nerve cells.  The doctor said that some of the cells “had changed”.  I wasn’t quite sure what that meant.  He grilled me repeatedly asking  if I had suffered any injury to my neck that could have caused this.  I hadn’t.  The report suggested that I have an MRI performed of my brain as well and I left the doctor’s office to go schedule that.

On my way home, I read the copy of the MRI report.  It made reference to evidence of something called demyelinating disease.  Having no idea what that was, the first thing that I did when I got home was to go online and look it up.  Myelin is a sheath or coating on the nerve cells.  With a demyelinating disease, this myelin is damaged.  It could be caused by a variety of things such as exposure to certain chemicals or genetics.  In the case of MS it is believed that an individual’s own immune system attacks the myelin.  This creates problems because the myelin plays a key role in the conduction of the electrical signals through the nervous system.  Damaged myelin inhibits the flow of the signals and can cause sensations (like my tingling leg), lack of coordination, problems with eyesight and numerous other symptoms.

Now we knew what was causing the tingling leg.  The next step was to figure out what was causing the demyelination and what, if anything, to do about it.  It was back to the imaging center for an MRI of my brain.

Better than a sharp stick in the eye, barely

The case of the mysterious tingling leg, part 3….

A couple of weeks later I went in for my first MRI.  This one was of my neck and it was not a bad experience, really.  It was a little loud but they supplied me with earplugs.  Luckily I am not claustrophobic so laying still in the small tube didn’t bother me.  Truth be told, it was actually quite comfortable and relaxing.  No results yet; that would take some number of days.

While the MRI was comfortable, the nerve induction test (EMG) was anything but.  In my first two years with the disease, there have been only a few incidences of physical discomfort.  The EMG was the first.

The first half of the test was fine.  The doctor stuck needles in my legs connected to wires that measured the electrical signals going through my nerves.  The second half was no fun at all.  With the needles stuck in me, the doctor pressed a metal electrode against different spots.  Pressing it hard against my skin was uncomfortable.  But that was nothing compared to when he hit a button on the machine and it sent electrical shocks through my leg.  Progressively dialing up the intensity of the shocks, the last few at each location came with a warning from the doctor that “this one may be a little uncomfortable”.  That’s for sure.

The good news was that the EMG results were fine.  My nerves apparently responded properly to the shock torture.  Again, I went back home relieved, expecting that the slight tingling would probably just go away on it’s own.

A pain in the neck

The mysterious tingling leg, part2…

While I was waiting the six weeks for my nerve induction test (EMG), I developed a sore neck.  It was like a stiff neck that you might get from sleeping in a bad position except that it didn’t get any better after a few days of a heating pad like it should have.  The likely culprit was my baby daughter and the way that I was holding her to feed her a bottle.  In the end, this little culprit turned out to be a savior.

My doctor prescribed physical therapy for me.  I have mixed feelings about the PT.  Learning a few exercises primarily for my traps was not a bad thing.  However, it wasn’t much more than going to a personal trainer for a few exercises and getting a massage.  The massage of my neck felt good, but I question the long term benefit of the treatment.  After a few weeks of repeating the same exercises that I could easily do at home, I did just that and stopped going.

Then one day while I was holding my daughter and feeding her a bottle I noticed something very peculiar.  When I turned my head down and to the left to look at her, I felt the tingle in my thigh.  Every time that I moved in that direction the same thing occurred.  I mentioned it to my wife who mentioned it to our doctor.  “Have him come back in to see me immediately”.

I thought that I had solved the mystery.  It must be that I have a pinched nerve in my neck.  That might explain both the perpetual stiff neck and the tingling leg.  My doctor disagreed.  He explained how it was unlikely because the nerve fibers going down to the leg would be buried well inside of the spinal cord at the neck.  A sensation in my arm or a pinched nerve in my lower back might make my idea more plausible, but not a neck-thigh combo.

I had no other symptoms at all and was basically very healthy.  My doctor suggested sticking with the PT and watching it closely to see if it gets any better or worse.  Then, as I was walking out of his office, he called me back.  “Let’s not wait.  Let’s get an MRI done and see what’s going on in there”.

Good call Doc.

Can a tingling leg mean a heart attack?

We will call this the case of the mysterious tingling leg, part 1.

Almost a year went by without any further symptoms apart from just feeling not quite as agile as I used to be.  Then one day, I started to notice a tingling sensation in my leg.  It wasn’t painful.  It was a similar feeling as to how your leg may feel if you have sat on a toilet seat too long.   The sensation was in the front lower part of my left thigh, a little above the knee.  It only showed up occasionally.  If I ran, it tingled.  If I walked very quickly to cross the street before the light changed, it tingled.  The strongest sensation occurred each morning when I would climb out of bed.  In each case, the tingling would cease as soon as I stopped the movement.

The tingling was so slight and intermittent that I didn’t concern myself with it until a month later when I had a conversation with a friend.  My friend had recently had a heart attack and was sharing his story with me.  He had all of the classic symptoms such as a tingling numbness in his arm and the feeling of an elephant sitting on his chest.  It got me thinking about my leg.  Was it possible that a tingling leg could be the same warning sign as a tingling arm?  Time to see a doctor.

My doctor ran me through a battery of tests including an EKG.  Everything looked great.  My heart was fine.  The doctor suggested that I schedule a nerve induction test to make sure that there wasn’t a problem there, which I did for six weeks later.

I went back home, very relieved, expecting whatever had caused the tingling leg to go away on it’s own.