Looking for some support

Hey, I am very new to this. The news of me having MS was and is scary for me, I am 25… If I am honest knowing this, going through this has impacted my life on a large scale, and have my first appointment with the MS Clinic very soon.

My main symptoms are balance, vision problems, fatigue, muscle twitching/jerking and swallowing issues that come and go. I have however noticed that pain, like bumping into things, even gently can be painful. And when its a hard hit it is a breathtaking, painful sensation! Is this in relation to anything MS?

I do find my symptoms to be a hindrance on my daily life, in finding aids for walking through PIP, needing adaptions or physical help when fatigued (feels impossible to move and do things even though I want to). I feel my symptoms have all come on quite sudden one after the other, within a year. (The symptom was vertigo like symptoms and shaky eyes that came on over night and stayed constant for a month), my vision being fine now but definitely not what it used to be. I can see, there are no need for aids.

Is this normal? To feel current symptoms are constantly getting worse? Or new symptoms are coming on too fast? Is intense pain normal when you bump into things hard, (does pain tolerance drop?).

Thanks for reading, and thank you for welcoming me into this group. Hope to hear some answers on the questions I have aske


Hi As4. Sorry but I don’t have the knowledge or experience to say whether or not what you are experiencing is normal. I think the best thing is to discuss it all with your MS clinic

I am a little bit on my way out of the door here so a very fast read and reply sorry, just saw the thread now and it looked like something that would appreciate an answer as fast as possible.

I will go straight to your question in the end. If you are experiencing an attack then yes current symptoms constantly getting worse is at least in my case completely normal.
My attack before the current one I could basically feel the discomfort and sensation issues crawling and expanding slowly across my lips from one side to the other over the course of several days. Similarly another attack before that one I could clearly feel again over the course of days and weeks how my weakness and sensation issues spread from the tip of my little finger, down the finger, down the side of the hand and then down similarly from the ring finger, then the lower arm, upper arm, shoulder, chest, etc. It was extremely easy to tell that an active development was happening, and it stopped immediately when I was put on steroids. Then little by little it symptoms faded, crawling back to where they first appeared with the end result being mostly just leftovers in that initial area. So I have prickly fingers for example, and I have prickly lips, but my arm is fine and the rest of my face got better.

I do not particularly find myself more sensitive to pain overall, but some places are very sensitive during my attacks, and previous symptom areas are particularly uncomfortable during pseudo attacks.

Well, this I have thought often while reading on this site, but basically I would think you need to be on steroids as fast as possible to stop your symptoms from getting worse, IF it is indeed MS, and otherwise making sure it is not something completely different, where steroids would be very harmful, as fast as possible is I believe completely vital.
If you have rather aggressive MS like I do, the attacks will just keep rolling over each other and they can cut any and all of your body functions like throwing darts at “where to lose next”. So definitely try to get that treatment train rolling.

If it IS something else, then surely that too is a the faster the better kind of thing. Sorry very rushed reply, I hope it will work out for you! Take care of yourself!

Hello again, next day so I had a little more time to read it now.
Sorry for my answers being all over the place.

It’s nice that you have an appointment rolling, it’s very important to keep pushing forwards in the NHS system it seems as they are apparently swarmed with work and will happily let those that don’t really need much help drift off a little by the sound of it.

Your symptoms seem like entirely common MS symptoms, but this can also vary significantly from person to person. They are fairly varied however and could at least individually have a number of other causes, which sometimes makes diagnosis etc. slow down.

Attacks are it seems often said to last around a month, so feeling like you got new trouble for indeed an entire month without getting better would be a common situation apparently. Then the attack might calm down and the body can start healing and compensating for the damage done, which might then make you feel like you are improving. This self-healing process is the strongest when you are young and recently diagnosed it seems, as the body gradually loses the ability to properly reform your myelin sheath (the cover around the nerves). This is also why it is important to put in effort to actually stop attacks if safely doable, because it reduces the initial damage and buys more time for healing while it is still possible. Many people end up with walking aids of some sort early in their MS it seems, as an early attack knock out their mobility and especially this early prompt steroid treatment perhaps wasn’t easy/possible meaning that initial untreated damage got worse than it needed have gotten.

I too would have been unable to walk from my 3rd attack which made wheelchair bound in hospital for a few days, but rapid steroid treatment made only some weakness and slightly weak sensation remain, with strength mostly returned.
I can as such still do jogging for example, and basically function without any aids in everyday life. The recovery power of the human body is rather an impressive matter if given proper circumstances to work under!

More specifically to your intense pain question, it is not something I have experience with personally and have only heard about very little, but very overall generally speaking about MS, your nerves are being done in well and proper meaning all sorts of abnormal sensations can occur depending on the extent of the damage. I for example, along with it seems many others, have phantom itches. That is to say, randomly feeling very itchy various places despite there being nothing actually itchy there, and as such scratching it does nothing because it’s very simplified just the nerves mistakenly sending a “it’s itchy here” message to the brain.
I can easily imagine pain being similarly disturbed, making it feel stronger in some cases. An exposed nerve is very sensitive, so suddenly getting very hot or very cold for example will also quite possibly make any uncomfortable symptom you have feel stronger than normally.
However again huge caveat here that while I do think actual pain as well sounds very possible, I do not have any experience with it and haven’t heard about it much, so that could also be entirely unrelated, I am mostly just speculating. In my case at least random unexplained pain is mostly limited to when I get rather cold somewhat quickly.

It was another endlessly long stream of nonsense from me so sorry about that, but I do hope some of it at least can reach and perhaps even help you a little. I really hope that MS appointment works out well for you! Do come back and tell us how it goes. We can sigh with relief and joke about it, or grumble with displeasure at the bad news, all together! You’re not alone at least. Feel free to share with us freely, speaking it out loud often helps even if just as relief from unloading the stress!

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Thank you for your detailed response! It’s nice not to feel so alone in this. I do often feel like a burden to rhose close ro me.
I currently have a mobility scooter, yes I can walk, yet after too long or on certain ground my balance is completely knocked. Wonder off into things and desperately needing to sit down. Which can teigger fatigue and anxiety.

Sometimes seing my girlfriend on her skateboard (we “scoot and skate” together) I find myself almost in envy of her ability. While I’m sat on this scooter I yes on one hand feel I have more freedom to go out. Yet also feeling trapped and invisible to others. When meeting with people I feel like a baby in a pushchair who no one talks to or even notices.

Ranted a bit there…

I have had unusual sensations such as tickles, more like there is a hair on my face! Oh it is so annoying, and this usually happens when I heat spicy foods.

So far i have learnt not to fight my fatigue if my body wants to rest, i let it. The “episode” is soon over if i let it happen, rather than fighting it or panicking.

I’m not sure if the intense pain is MS related either. It is something I need to bring up with the Clini for sure. I have suspicion it may be die to prolonged stress levels. Which i hear is not uncommon with anxiety disorders.

I have once experienced “nerve pain” in my legs. From toes to hip on both legs, it was so sore! Brought me to tears, constant burning and just couldn’t keep my legs still. My legs do get quite sore when cold suddenly and the cold does seem to trigger the twitching/jerking of my legs.

I do like it here, I will be back to share once I have seen thw clinic. Thank you again for your response. Much has been considered and it is nice not to feel so alone in this. Also thank you for helping me understand a little bit on how symptoms can come and go, or sometimes stay. And what treatments are useful. Even if only to a few.

Thank you :blush: