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MS... What

MS… What’s it like?

Have you been asked ‘What it’s like’ to have MS before? I have… and it’s really not very easy to explain… not one explanation can be used for all of us diagnosed since we all differ symptom wise and such.

I usually start off by explaining what MS is and how it attacks. Using the ‘wire’ reference… with the wire coating to explain the myelin sheath. The wire under the coating is our ‘nerve’.

So what is it like to live with MS? That is a very complicated question to answer… because the symptoms themselves are hard to explain. So I have made a little ‘list’ that I can send my friends that ask me the, “what’s it like” question.

  • No matter how much I sleep, I’m still going to be tired throughout the day. However, even though I suffer from Fatigue, I can’t go to sleep very easily at night. This can be caused by pain and/or insomnia.
  • When I’m experiencing ‘nerve pain’. This does not correlate to the common phrase “my nerves are shot”. This means by nerves are actually causing me physical pain or discomfort. I suffer from a burning feeling, and sometimes the area that is burning turns red and is hot to the touch, but not always. Nerve pain can also just be flat out annoying, with less pain involved. Like a numbing/tingling feeling, sort of like when your foot falls asleep.
  • When I say I’m having an “MS Moment”, that means exactly what I said. My MS is causing me to have a ‘moment’ where I can’t get the words out that I want to say or I forgot what I was talking about or wanted to say all together. This can also be described as Cog-Fog aka Cognitive Dysfunction.
  • Why I can’t walk long distances… Because I have foot-drop on my right foot. Not very noticeable… I didn’t even notice it until I saw my neuro and did “the walk” and they noted my right leg was swinging out to compensate for my foot-drop, which is caused by weakness.
  • Why do I have to check the weather before making plans, even if it’s grocery shopping? Well that’s because the weather has an affect on my MS and many others with MS as well. Living in Central Texas, I obviously can’t go grocery shopping or to an outside event in the heat of the day when it’s over 100 degrees Fahrenheit.  Not only does the extreme heat make me weak, but it also affects all of the things I’ve listed above like fatigue, cognitive function, walking, etc.
  • Now how do you explain vision problems? This is a hard thing for me to explain, especially if I’m having that stabbing pain behind my (optic neuritis). Things get a bit foggy at times and I’ve actually described it as putting on “beer goggles” when I was in my first big flare up.

This list can go on and on, especially depending on the patient you’re asking. A group of patients may all experience the same ‘symptom’ but they won’t experience it all in the same exact way. Something that I’ve heard a lot is that, it doesn’t really matter how many lesions you might have but what is important is WHERE the lesions you have are at in your CNS (Central Nervous System).

I’ve heard many family members and friends say that I seem to do better and/or look better when it’s during the fall/winter season. And I feel that I am doing better during that time because I do not have to deal with extreme heat.

This blog only covers the “What is MS like?” question and not even all of it. But there is also that question on “How is MS diagnosed?” I think that’s something I can write about at a later time because that’s going to be a lengthy post!

xoxo

Ashley Ringstaff | Follow Me on Facebook | Follow Me on Twitter |

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • itasara
    2 months ago

    I like what you said-Not easy to explain. I have, so far and thankfully a rather mild case of MS. I have known about it 13 years and never had any reason to think I had anything wrong with me until I did. I only new three years after a daughter was dx’d three years before I was and I woke up one day with transverse myelitis which is what she had had. Anyway I have been on Copaxone for 13 years and my major sx havs been bladder any maybe some name recall but some of that may have to do with being older now and having had 5 pregnancies (before my official dx.) . I recently came off MS medication, having read articles about this about having a long term case of mild MS and being on medication over 12 years and being over the age of 65. Hopefully all will continue well or I’lll have to go back on.

  • Ashley Ringstaff moderator author
    3 weeks ago

    Hey! I’m glad you enjoyed the article.
    I’m hoping all is well with your MS journey.

    xoxo
    Ashley Ringstaff
    Moderator/Author

  • Carol
    10 months ago

    Great article. I have experienced all these different pains and symptoms. Fortunately, not all of them at the same time. I try to eat okay, exercise every day, and take Gabapentin and Tramadol for pain. My medications only seem to last such a short period of time. I have been unable to receive any stronger medications from my doctors no matter how many times I bring up the subject.

  • Ashley Ringstaff moderator author
    10 months ago

    I’m glad you enjoyed the article, although I’m so sorry that you deal with these things too.

    I deal with pain on a daily basis, not just MS related… I was seeing a pain specialist for a while, but I am now just dealing with it on my own and stretching as much as possible.

    xoxo
    Ashley Ringstaff

  • @masbrautigam
    4 years ago

    Again great article!Just wish I had a printer in my handbag to print to those that ask…..I am sure they still won’t understand.How do we determine to who we explain in detail?Sure friends,family that don’t seem interested?

  • ciara
    5 years ago

    I am the facilitator of a self help MS support group, and an MS ambassador.
    During our MS walks people must come by our tent (Heart of Texas MS support group) to get a ticket for a prize. At the tent, I have the MS experience kit which each person must do an experience to get a ticket. Many people who come to the walk are family members or friends of someone with MS, or they themselves have MS. Some family members/friends come and tell me she/he tell me they are feeling _______. I want to know what it feels like(I am so overjoyed at this). I give them the tools to understand, for instance – balance I give them a flipper for one foot and tell them to walk around for a little bit. Most get it. Some are amazed that their loved one can even walk around like this. There are more experiences, but even those sometimes don’t clue some in. Those people I ask them “are you familiar with computers”? (just about everyone is) I ask them if they know what the mother board is, what is it’s function. If they don’t know what it is for, I tell them. Then I tell them that MS is a disease that affects our mother boards. So many times I see the look of “I get it” which makes me want to talk to even more people.

  • Cathy1959
    5 years ago

    When friends and family ask me what it feels like I explain that fatigue is like the energizer bunny. One minute you’re going along, and the next you can’t take another step. I then have to sit and rest (recharge my batteries). Optic neuritis for me is like having Vaseline rubbed across my eye and all I see is a blur. Losing control of my bladder is the worst of my problems because I have no advance notice, it just comes out when it wants to. (failure to store). Then there is the things that go on inside your body that no one sees. When I lay in bed at night I have the tremers. I have 24 hour deadness in both feet which is so annoying when I have shoes on. These are just some of the things I tell people, but I don’t tell them everything. Then they avoid you because they feel uncomfortable that they cannot help you.

  • Ashley Ringstaff moderator author
    5 years ago

    Dang – you do deal with a lot and have your own ‘explanation’ for them. Never thought of it that way.

    As for the people who avoid anyone going through this – because they are uncomfortable about it – or that they can’t help…. just being there and being supportive helps us, ya know? I think a lot of those close to us need to realize that.

  • Lori
    5 years ago

    Thanks so much for writing this. It is so accurate for a lot of the symptoms I have intermittently.

  • Ashley Ringstaff moderator author
    5 years ago

    I’m glad that you enjoyed it! I’m always happy to help share my ways in how I describe MS or how I feel with my MS.

  • vivi
    5 years ago

    I recently went back to my physician and had developed a new symptom. He started me on Baclofen for the severe spasms I was having in my left foot. Well, now I have had diarrhea every since I started taking it. My pharmacist said that this was just a side effect of the medication and not a reaction to it and to continue taking it. Well, that’s easier said than done. Feeling weak and unable to eat without the trot’s. Having MS is one thing. Then having side-effects from some of the medications is another. Now I’m on Lomotil to stop the diarrhea. I never realized that I had so many muscles that could all jump at the same time. My granddaughter who stays with me as much as possible to help me can’t help but laugh at me sometimes because of my “Clumsiness”. I pray for anyone who has this illness. Seems new symptoms occur everyday. Thanks Ashley for sharing your journey.

  • Ashley Ringstaff moderator author
    5 years ago

    I’m so sorry for your recent issues with MS! I was on Baclofen – but it stopped working, so I’m not on Tizanidine. But we have all these symptoms from MS… then we take medications, that cause more side effects/symptoms. It STINKS!

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