How Do You Experience Your Symptoms?

[jsoxfan618]

MS to me is a very puzzling disease. I know we all can experience MS in similar and in different ways. Just wondering how people experience their symptoms. If you seem to experience them all at once or different symptoms at different times, etc.. ?
As for myself, I'm in limbo. Some symptoms stay pretty much constant (like fatigue and muscle weakness). Some come and go. I never seem to get them all at once(gladly). I think they call that the hug?
Just curious.

[CocoH]

For me the fatigue is constant & incredibly frustrating. Daily, but randomly I have numbness & tingling in my shins & feet. Left side of my face does the same & my right hand. I also get some random "electric shock" type feelings in my thighs. That one doesn't happen very often any more though. If I'm really tired my speech will get a little slurred & I have a hard time getting the right words out of my mouth. If I'm tired or in the heat I get the really heavy legs/walking. Hope this helps! It always helps me to hear what others are experiencing or have experienced.

[Justsayyes]

Some symptoms are permanent, for me that includes certain areas of numbness. Many other symptoms come and go. Sometimes they are there for months and get better. My urinary symptoms seem pretty constant, but even they get better and worse.

After having optic neuritis in both eyes, my vision has improved recently, which was totally unexpected. My vision doesn't blur in the heat like it used to either. Lucky me!

I think our answers are going to be all over the place. We often have similar symptoms, but how they come and go can vary alot.

[earnellzwifey]

For me my sx's such as the left side weakness, fatigue, bladder problems and numb tingling in hands and feet are there all the time. The spastisity in my legs comes and goes but shows up often. The other random problems such as headaches, severe back pain, and cog fog just shows up when it feels like it.

I don't really have no pattern to any of it other than something is always bothering me.

[GothicRosie]

I'm plagued by significant fatigue that can come on suddenly with a "can't keep my eyes open one more minute" feeling that can make me sleep for hours even after a full night's sleep. I have daily fuzzy/buzzy/electrical feelings on the left side of my face. I had an attack of trigeminal neuralgia last december that was horrific. I have a lopsided MS hug with pain and stiffness on my right side. I also have a constant buzzing from my pelvis to my toes that feels like I am always plugged in. I have constant pressure-like headaches, neck pain, and back pain. There is that inability to go up stairs without feeling like I am made of lead and the constant dropping of things and bumping into things. I have occasional positional vertigo and transient amnesia episodes....oh I have tremors that get worse with caffeine and when trying to focus on something.
sigh...lots of stuff

[floatingurboat]

Let's see, I think the two biggest issues for me are severe backpain (constant) and vertigo, which comes and goes as it pleases, but it always stays for more then a day when it decides to show up. *sigh* I get buzzing and numbness in my fingers and toes as well but that's not been permanent so far, worst case scenario my numbness stays for a few months, but always goes away. oh and occasionally right knee starts to hurt which makes it super fun trying to go up and down the stairs because it feels like my kneecap is trying to come off.

There's lots of other smaller stuff though that I can't even think of though.

I think earnellzwifey said it best though ~ "I don't really have no pattern to any of it other than something is always bothering me."

~Elly

[jazzgirl]

Jsox....the "hug" is a sensory symptom where people get a squeezing sensation around their chest and upper back area feeling like they're being "hugged". I hear it's pretty uncomfortable.

I don't have relapsing disease anymore (although I do have relapses, I progress each time and never go back....lots of damage on my MRI.)

I hope you get some answers. I don't remember limbo. That took place for me in my teens, and I haven't been there in a VERY long time! .

I do hope you get some answers soon!

[psligtin]

It really helps to compare. WOW.

I love this post. Its sort of comforting to compare experiences and know you are not alone -- even though its different for all of us.

For me, my constant is weakness in my right leg. It is worse at times, and not so bad others... but its never truely been gone. I have the dreaded hug. Its my worst symptom right now. Its on my right side, and is downright painful. It comes and goes. Baclofen helps, but that makes me SO PUNY, so I don't take it often.
I have pins and needles that creap up my legs all the way to my abdomen. This comes and goes too. Its the most unnerving. I hate it.
I get a tinge of TN sometimes (at least what I think is TN. Its a pain sort of like toothache but not really?)
I have been lucky to not be as tired as most seem to get.
I have some combination of these every day. BUT I am excited to report that they have not made me miss work, or not function. I push through as much as possible.
OH what I would give for one day when I have none of these! I can wish!.

[kerritmc]

Recently dx with symptoms others brush off

Perhaps others experience this as well: when I tell a non-MS person about a symptom (dizzy after a walk, fatigued like I can't hold my head up) I get "oh, that happens to me too".

Why does this response annoy me? Maybe they are trying to make me feel better, but really it feels like a dismissal of my disease. Am I too sensitive?

[Splendid]

I have no idea. Used to have a muscle in the arches of my feet that "vibrated". Now I have this on and off again vibration more in my heal...it literally turns off and on all day long in 1-2 second intervals. For me, it is like a constant MS siren.

If I push it in the heat, I get a headache. I have noticed blurry vision on right eye at times...no pattern. I have noticed an eye twitch in my right eye that lasts a day or two but can't come up with a pattern. Some days I feel very tired...no pattern. I really cannot come up with ANY rhyme or reason to my symptoms.

[jsoxfan618]

Thanks for the feedback

Well thanks guys for all the feedback. It is interesting hear the similarities and to be re-assured that we are not alone and not just nuts (lol)
-Floatingurboat- I like your quote: "I don't really have no pattern to any of it other than something is always bothering me." So true. I just wish it weren't so true.

kerritmc- I can understand how you feel about being dismissed. In my experience, especially with people connected to this website, they are trying to express that you are not alone in what you are going through. I wouldn't take it to heart.

Psligtin- I am excited too that my symptoms have not made me miss work or miss out on anything with my family. I'm hoping it never gets that way. I guess the silver lining in all this is that my symptoms have made me re-evaluate certain things in my life and I am taking better care of myself than I was two years ago.

[JoanFrances]

Hello Jsox

I have often had people ask what seems to set my spasms off, when I have them.

My answer is always the same, if I knew the answer to that question I surely wouldn't be doing it.

Sounds fresh to answer that way but, after having MS for 20+ years, I get annoyed that my family still has no clue

Numbness has been part of my life in varying degrees for almost the entire time. The tremors and some of my other sx seem to come and go seasonally.

This has been my worst year yet, with the fact that we have had such an extreme summer of both high heat and humidity

The hugs have become more of a daily issue that befor. In the beginning they only happened in the winter, now it doesn't matter what the weather is.

Good luck Jsox, I hope to see you on the forum often as you walk the path MS will bring you down