Less Common Symptoms

There are many symptoms with Multiple Sclerosis (MS).  I've never met another MS patient with the same symptoms as me.  It all depends where the MS lesions are located in the brain and spinal cord.  This makes diagnosing the disease difficult for doctors and difficult for patients to believe.  I often wonder how I got this crap which has changed my life forever.  In my next few posts I'm going to describe various symptoms and how they relate to me.  My info is taken from the National Multiple Sclerosis website and my own personal stories with each symptom.  I'll be writing posts about the most common symptoms and then I'll be going over some less common symptoms.  I've had a majority of them at some time or another!

- Fatigue 

- Walking difficulties (gait) 

- Numbness or tingling

- Spasticity 

- Weakness 

- Vision problems 

- Dizziness & Vertigo

- Bladder problems 

- Sexual problems 

- Bowel troubles 

- Pain

- Cognitive changes 

- Emotional changes 

- Depression 

- Heat intolerance
- Psuedobulbar Affect

Scooterjon

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My Biggest Disability With MS

This post is about a crappy topic (no pun intended).  This is about bowels so if that kind of talk bothers you don't read this post.

Most people probably would say losing the use of your legs would be the biggest handicap with MS but I don't agree.  In the past year I've lost control of my bowels.  The bowel problem is the most challenging of all my symptoms.  It has changed my lifestyle dramatically and it's slowed to a crawl.  In fact, in June of 2016 and still continuing today I've become a bit of a recluse.  I don't know when I'm going to have a bowel movement anymore so I don't like to leave my apartment too much.  I mean I know when I have to go but I have to be on my toilet in 45 seconds to a minute otherwise I'm making a mess.  It's like when you have the flu with diarrhea except I can't run to my toilet anymore!  

I have to transfer three times before my butt hits the toilet seat. First, I get on my scooter, once I'm in the bathroom I transfer to a stool that is the same height as my toilet.  Lastly, I transfer to my toilet seat.  This all has to happen in that 45 seconds to a minute. Sometimes I don't give myself adequate time and accidents happen.  I've even woken up in the middle of the night and had to rush to my toilet for a BM. If that doesn't interrupt a good nights sleep I don't what will. Sometimes I'll be dreaming that I'm looking for a restroom and when I wake up I really do need a restroom!

Just this morning I was about to urinate and had my catheter inserted. Suddenly, I felt the urge that I was going to have a bowel movement.  Luckily, I was facing my toilet.  I only had about 20 seconds to turn around and as soon as I sat down I was having my movement. Then 30 minutes later I had to rush to the toilet again and as soon as I landed on my toilet seat I was having another bowel movement. The other problem I have is this.  It doesn't seem like I ever empty my bowels completely.  

The other bowel problem I have is constipation.  Because I don't like having accidents (my wife has to clean those up and I feel just horrible), I have a tendency to sit on my toilet for long periods of time and often nothing happens. I go into the bathroom thinking something is going to happen but nothing does. I bet I spend 2-4 hours per day sitting on my rear end in the bathroom.  I'm continually faked out by my bowels.  I'll think I'm going to pass gas but I find myself really needing a toilet or rushing to the toilet and then sitting for 30 minutes.  I wake up every morning and it feels like I better get to my toilet ASAP.  Then I sit on the toilet and nothing happens.  Now you can see why I have reclusive tendencies and I hope this all makes sense.

Ten months ago my gastroenterologist prescribed Miralax for me. I take it everyday. It helps with the bowel movements but it's not the same time every day.  I can have bowel movements any time of the day or night. It's kinda hard to plan anything.  I used to read newspapers on the toilet to occupy my time but now I do crossword puzzles.  I bet I've done 2,000 crossword puzzles in the past year and a half since my bowel troubles started in June of 2016.  The other thing all this transferring to and from the toilet does is make me more fatigued.  My MS fatigue is as bad as ever and my bowels don't help.  Stay tuned for more posts.  

Scooterjon

Self-Cathing For Urinating

I was diagnosed with the disease multiple sclerosis in the summer of 1991 at the age of 33.  I don't tell you the following info for pity or sympathy.  I accepted my plight a long time ago and realize I was just dealt a bad hand.  I just want to inform people what can happen to them with MS.  The first 20 years were tolerable but the last six have been challenging to say the least.  In 2011 I developed MS lesions on my spinal cord.  The lesions are interrupting signals to my lower body and affecting all my bodily functions below my waist.  I can no longer stand or walk.  As a matter of fact, my legs aren't good for anything.  I use my hands and arms to lift and move legs and feet at least 100 times a day and I don't do anything.  My legs are just dead weight.  Consequently, I'm on my 3-wheeled scooters 100% of the time.  The last thing I see when I go to bed at night and the first thing I see when I wake up in the morning is my scooter which I named "Ginger".

On of the things that is affected by those MS lesions on my spinal cord is my bladder.  I've cathetered myself full-time since January 2000 so I'm used to that. I'm guessing my spinal cord lesions must have been developing since that time.  If your worried about self-cathing don't be.  It isn't painful at all.  If you use a lubricant it should not be a problem. And I should know because I've self-cathered approximately 34,125 times give or take a couple hundred. I cath five or six times per day.  I've heard from people that the Foley catheter hurts when removed from the bladder.  The Foley is used for operations.  In my 17 years I've also had two bladder infections that needed medical attention.  I can tell now when a bladder infection is starting.  I get funny feelings in my genital area.  Nowadays, when I get those feelings I start drinking water. That seems to take care of it.  Usually, 32 ounces of water seems to stop my bladder infections.  For anyone that doesn't know people can now get 200 catheters per month free.  I'm on Medicare and Medicaid and I guess the government decided it was cheaper to pay for catheters instead of hospital visits.    

I'd always wondered how many times I could catheter without it doing something to my urethra.  I found out in the spring of 2014 what can happen.  When I catheter I use a lubricant called Surgilube.  I found the Surgilube tube is easier to handle than a KY Jelly tube.  I apply a little of that on the end of my catheter and it slides up my urethra easily. In the spring of 2014 though I was having trouble inserting catheters.  What had happened after 17 years of cathing is that my urethra had developed scar tissue and narrowed.  The urethra can be subject to narrowing so if you catheter be aware of that.  

Stretching the urethra assures the passage stays open and allows for urine and semen to pass through.  Stretching a urethra is called “Sounding”.  Urethral sounding is the medical use of probes called “sounds” to increase the inner diameter of the urethra and to locate obstructions in it.  So that was the problem with my catheters not getting to my bladder very easily.  When I met my urologist the first thing he did was insert a cystoscope into my urethra to view what was going on.  He then inserted three “sounds.”  To me they looked like sticks of spaghetti that come out of a box in the grocery store.  I'm not exactly sure how the sounds work but my urethra widened and cathing was easy again.  That was the spring of 2014 but it happened to me again in the spring of 2016.  This time I knew what to expect.  I went back to my urologist and had another sounding done to my urethra. 

Scooterjon