MS Symptoms

What Its Like to Have MS

Many people wonder what MS is like and what MS sufferers go through. For me MS is a dizzying array of symptoms, both in the literal and figurative sense. Since MS is never exactly the same for any two people, the best way to determine what someone is going through is to ask them and then be a good listener so that you are able to empathize with them.

 I have a favorite way to describe my fatigue. Try to think back to the last time you had a flu or a bad viral infection. Remember how draining it was. Remember you may have made plans but you were so out of it you knew there was no way you were going to be able to carry out those plans? Well, that is what fatigue is like for me. It is called lassitude and it is very debilatating. It can hit suddenly out of the blue, or it can slowly creep up on me, so that by the middle or end of the day, I have reached my physical limit. During my good days, I look forward to 4-6 hours of energy. Duriing my bad days, I can only count on 2-3 hours tops. During my real bad days, I have to stay in bed completely.

I have developed nerve pain in the last few years. For me the pain is like a sudden searing burning sensation, that travels up my right leg only. It can settle in my thigh or below my knee, or even in my knee cap area. At its worse, it burns as though someone took a match to the main nerve that travels up anddownmy leg. At its best, I don't feel it at all. For those in-between days, I find my prescription (Lyrica) makes the pain very easy to manage.But if its a bad day the pain can be excruciating as it travels from the sole of my foot, to the upper thigh area. The burning and stinging and numbness all at once is a little much. I try to rest as much as possible as I notice that the pain is much easier to manage if I'm not overly tired.

Balance/coordination problems are handled byI using a cane that way I don't have to worry about falling, which can become a common occurrence with MS patients. Sometimes just standing upright throws me off balance and I find myself  reaching out for what ever is handy to steady myself. I find the most annoying problem with my coordination is with my handwriting ability. On a bad day it is very hard to write legibly, its as if my mind is thinking faster than my physical ability to write. Letters are often spaced incorrectly and it is difficult for me to even read back my own writing. I feel like a 2nd or 3rd grader when it comes to my penmanship.

Bladder and bowel problems. Without getting too graphic, the problems have ranged from constipation to diarrhea. And from bladder urgency to bladder frequency. There are of course drugs to take for these problems, but I haven't had to resort to prescriptions in quite a few years.

Eye problems Optic Neuritis is common but my eye problems stem from rapid eye type movements and dizziness. If the dizziness is severe enough I have to stay in one position and just ride it out. Meclizine works for me in controlling the dizziness. Again, I haven't had this problem in quite some time. Although the rapid eye movements comes and goes on a regular basis.

Choking/Swallowing is the most scariest for me. I dread it when the problem gets extreme because then I know a full fledged relapse is in effect and I'm going to have to rely on strong steroids to get through it. This problem has caused me to lose my gag reflex which is, as you can imagine, quite troubling since I cannot stop anything from sliding down my throat against my will or knowledge Pneumonia (bacterial) is a real possibility since it is easier for foreign matter to go to the lungs. I consulted with a speech therapists who taught me things to do to keep from choking and how to give myself the Heimlich if neccessary. I take smaller bites when eating andavoid certain foods when I find myself choking too often. I have small episodes of swallowing down the wrong pipe, but its been a few years since I had to get help specifically for choking mishaps.

Cognitive Issues are often embarrassing and numerous. A neuropsychologist assisted me in understanding my deficits, which really helped me to feel less crazy. (smile) Of course the tests can take a good 4 hours, then you have to come back for the results, so it is tiring andtimeconsuming, but I found it worth it in the long run.

It can be from forgetting names, to forgetting places and past occurences. Seems I can pretty well remember clearly up to '93 when I was diagnosed. After that, I am unclear on when specific events occured and often have to be reminded and gently persuaded that someone already told me the information I'm positive I just heard for the very first time.

For me, these are the main issues. However for others, it could be totally different.

 There are many medications available for the symptoms, but there is no cure for MS at this time. There are new drugs being released from the FDA and at this time I am waiting for the oral pills to be approved and released within the next year or so. There are injectible drugs which slow the course of the disease down and I personally injected myself with the drug Copaxone for seven years.

So the next time you find out someone you care about has MS, just take a minute to ask them what having MS is like for them. You might be surprised at what you learn, and your friend or relative will be very touched that you cared enough to ask and to listen.

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Comments 8 comments

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

OK, that sounds like a workable solution. First I have to figure out what a Karo pack is exactly. lol As soon as I do though, I will try to get one and see if it doesn't help. Thanks so much for the suggestion!

rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

I've done a hub on heat options as well. Since the Karo is a soothing texture, I wonder if you could leave the Karo pack at room temp, then when you need it, use a warm water bath or heating pad to heat it up? Or use the Karo pack against your skin and a heating pad on top of it as the heat source? Let me know if you stumble on something great. Or point me to more of your hubs with successful strategies. I definitely track these things.

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Well, I guess I could give it a try when the pain level is low, but when it is high I can't tolerate any type of coolness. Cold feet and cold hands are constant with my MS and will trigger a worsening of the nerve pain. We did experiment during an extremely painful time with heat. It worked to calm the nerve down. I ice up for my injection as well, but skip my right thigh when the nerve pain is over a level 5 on a scale of 1-10.

I remember being told to try different textures for my swallowing problems, although I don't remember lemon ice specifically. She did tell me to experiment with different temperatures. I haven't had any serious choking/swallowing issues for about 5 years. Just the type that comes up for brief periods of time.

Thanks for your suggestions, rmcrayne!

rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Sometimes we use ice in the clinic as a distraction, like with iontophoresis. You have to be careful with cold with MS, but I was thinking you might try the Karo syrup ice pack to distract you from your nerve pain. Start with it in the frig instead of freezer, and for short trials. Clients tend to find the Karo pack a soothing texture. Also I was wondering if your SLP suggested cold and tart to alert swallowing? Like lemon ice?

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi rmcrayne, your opinion is important to me and I'm glad you give my writing a thumbs up. MSers often depend on OTs to help us adjust to our changing lives, if you ever have a suggestion please feel free to leave it in your comments. I am sure it will be greatly appreciated. Thanks so much for your encouraging words! I will check out your hubs too.

rmcrayne profile image

rmcrayne 7 years ago from San Antonio Texas

Wow Jen, your writing is outstanding. I just stumbled on you in the forums and saw someone mention your writings about MS. As an OT I was curious. Glad I followed up!

Jen's Solitude profile image

Jen's Solitude 7 years ago from Delaware Author

Hi Smireles. Thanks so much for taking the time to leave a comment. You are right about the similarity with Diabetes, in fact the drug that I am now on, Lyrica, was first intended for diabetics, but also helps MSers with nerve pain.

Take care, Jen

Smireles profile image

Smireles 7 years ago from Texas

Thank you for this heart felt description of living with MS. This is a disease I know very little about and was surprised to learn about the neuropathy and nerve pain. Some of the symptoms seem to have something in common with the way diabetes affects the body. Very interesting and I hope you do well. Blessings, Sandra

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