MS at 21? Please help I am very anxious.

New diagnosis and before diagnosis
1

Hi everyone.

So I am concerned I have MS. I know there are so many diseases that share extremely similar symptoms and have researched them all extensively (Dr Google is always a bad idea I know but once you start you cant stop). I even convinced myself it was just fibromyalgia at one point as the symptoms are so similar and of course that is a much better prognosis. However there are certain things that make me convinced it is actually MS. I know nobody can tell me for sure, but It would be helpful to know your thoughts on whether it sounds like MS as i can’t talk to my family about it - my parents think it’s in my head.

So for a few months now I’ve had tingling / pins and needles mostly in my arms and legs / hands and feet multiple times a day but i have experienced it in other places such as the back and head, though not often. When i first started experiencing this i was on a mediation that could cause tingling in the hands and feet, however i have been off this now for months and am still experiencing it but not in the same way. When I was on the medication my legs would just start tingling randomly for a few minutes and then go away but this would happen a lot of times throughout the day. Now, it is more when i am resting on a limb even for a short amount of time, so I will lean on my arm for hardly any time at all and i will get pins and needles and then numbness, sometimes my leg will do the same but when I’m not even leant on it. I also seem to experience it a lot when I’m sat on the toilet (weird I know it must be to do with the way I’m sat), my buttox and whole leg will get pins and needles, and sometimes go numb but not to the point i cant walk on it.

The other main thing is a tremor, it’s very mild at this point, but it is one of the things that has convinced me this is MS as it appears to me that it’s an intention tremor, so when I move my hand. I also get a tremor in my leg, especially if i lift just the heels of my feet up, my legs will start to shake (not sure if this is tremor or weakness?)

Another thing is double vision, it is also quite mild as it’s only when i look to the side, however it goes away completely if i shut one eye and i have had my eyes checked in regards to this so I know it isn’t an eye problem, so is most likely a brain problem.

I have a few tension headaches throughout the day as well as tinnitus (ringing in my ears and muted hearing for a few seconds). Sometimes the ringing is quite loud and very distracting. (I know the headaches could be the stress as they are relatively new compared to my other symptoms but still feel it’s worth pointing out)

I have also have issues with urinary incontinence, I am fairly sure it is overflow incontinence based on my symptoms (leakage throughout the day without knowing, stopping and starting flow, short flow etc) and my gp has referred me to get an ultrasound to check this out. I know this type of incontinence is associated with MS (there are a few other causes but they don’t make sense for me eg enlarged prostate (I’m a woman). I’d also like to say I seem to remember having this for years but as I’ve had it so long i always ignored it and thought nothing of it, so it isn’t a UTI, or something short term like a blockage.

I also have noticed i start coughing after i eat, like a chesty cough but i’ll just cough a couple times then be fine. It doesn’t feel like anything is stuck but I know this can be a symptom of Dysphagia.

I also get muscle spasms/twitches throughout the day.

I was getting a lot of back, arm and leg pain which was quite bad for a few months but that has recently cleared up for the most part, but if i walk a long way i start to feel it. This was one of my first symptoms along with the tingling.

So, my main concern here is PPMS. I know it’s a very difficult and lengthy diagnosis, but I also know this sounds nothing like RRMS and a lot of my symptoms sound like PPMS symptoms to me. The thing is I am only 21 so I know it us very uncommon to have it as this age but it does sound like it to me and I am terrified of having ppms so young, of course it is never an easy thing to have but from what i’ve seen people that are diagnosed at an early age seem to progress quicker / in a more disabling way and i seem to have a lot of symptoms so it worries me even more that I’m not going to be able to speak / walk or do anything really in a few years.

So I suppose my main questions are,I appreciate you are not professionals and obviously can not tell me for sure but from your experience / from what you have seen do you think this sounds like PPMS? Is there any way this could be RRMS (it really doesn’t look like it to me but I’m hoping) and do you know if the outcome generally worse for PPMS if you are diagnosed at this age?

I know this is so long and I’m sorry thank you if you took the time out to read all of this i really appreciate it!!

2

just to add I also get cloudy vision in the morning like there’s a mist over my eyes but it clearly up within a few minutes, this is my longest symptom I’ve had and the first I noticed - not sure if it’s associated or not

3

Nothing you’ve written shouts MS to me, your symptoms could fit any number of things, but you’re obviously very worried so see your GP…with an open mind, try not to fixate on MS

4

yes i think it could be MS all the symptoms are similar to that of MS

5

Not sure who ‘anonymous’ is but no it doesn’t sound like MS, specifically PPMS. Getting PPMS at your age is virtually unheard of. It mostly happens to people over the age of 40. Your best option is to go and see your GP. The tingling could be due to a vitamin or mineral deficiency.

6

Yes, MS does cause headaches but they can be constant and worse with a complaint that otherwise mimics MS symptoms called APS; Sticky-Blood or Hughes Syndrome; see http://aps-support.org.uk/

The only other difference to MS is something called Livedo reticularis

About a fifth of APS patients have a skin condition called livedo reticularis, that seems to affect women more than men.

Livedo reticularis is caused by tiny clots that develop inside the blood vessels of the skin that reduce the blood flow. It creates a red or blue blotchy, lacy pattern usually on the knees, thighs and upper arms, but can also appear on the body. In some patients it can be quite widespread. The condition is often more severe in cold weather.

May sound frightening but this treatment can be treatable using Aspirin.

Get I checked by your GP.

George

7

What does your doctor say? Have you been referred for any tests?

8

I know it is very uncommon but there are a few people on here I’ve seen have been diagnosed in their 20’s and I’ve heard of a few cases online. I’ve been to my gp and all my bloods are fine, the thing that’s worrying me the most is the tremor as it seems to be an intention tremor and the incontinence as overflow incontinence is associated with damaged nerves in MS too so that’s why I’m concerned about MS. I also went to see a neurologist and he tried to say it was just anxiety but I’ve had that for years and I know how it affects me, and I hadn’t been anxious when the symptoms stranger either so it’s all just worrying me more as nobody is taking me seriously and my family think it’s in my head

9

I saw a few gp’s - all agreed I needed to see a neurologist. I already had one as I had idiopathic intercranial hypertention but recently went into remission so that told me to just tell him about it at my check up appointment. I told him my symptoms and he just did the hammer reflex test and said as that was fine it meant it wasn’t neurological. I was in there for about 2 minutes and he said it was just anxiety and prescribed me an antidepressant. I have always had anxiety and it has never effected me like this, I was also not stressed or worried when my symptoms first appeared so I know it’s not this. He seemed like he just wanted to get the appointment done as soon as possible. He didn’t check my tremor or do any other tests and I think because I had an mri 4 months ago (before my symptoms appeared) of my brain and it was clear he just presumed there was nothing wrong with me

10

This would only explain my headaches which is actually the symptom I’m least concerned about as it feels like a tension headache and is my newest symptom so I think could just be the stress I’m under with all of this. It doesn’t really sound like what I’ve got but thank you for the information anyway

11

You could pay privately for another MRI? Sadly I think it’s unlikely the NHS will pay for you to have another MRI so soon after your last one.
You say you have had anxiety before, are you on treatment for that? I recommend sertraline. It sounds like even if these symptoms aren’t caused by anxiety, they are making you anxious so you could benefit from sertraline.

12

Another thing you could do is ask for a second opinion

13

i know you are concerned about PPMS specifically but have you considered the idea of it being RRMS? It doesn’t look like a typical case but that doesn’t mean it should be ruled out! I’m currently undiagnosed too but maybe someone else could shed some light on whether it could be RRMS :slight_smile:

14

I have PPMS i dont get intention tremors at the moment. MIne started with one thing alone. MY foot went dead, and also it felt like i was walking through wet icy field with a welly with a hole. I ended up left side weak, i woke up one morning and i could barely walk or get out of bed, my left side and my foot was so weak. I went to a neurologist. I had an episode of going blind prior to this attack. I didnt have tons of odd things in between the two. Also i would collapse with a hot bath.

I still have the same pattern, but my mobility is slowly getting worse. Yes i have odd things now and the worse nerve pain in my foot, and spasms and cramping, i walk like i have concrete boots, but its been ongoing for a long time, and i get fatigued. i do have tremor at the moment in my mouth which drives me mad. I had some tremors earlier on but i am on propananol and this helps that.

Obviously something going on but i would personally steer clear of pointing it to one thing, as the more anxious you get and the more readiing you do well you could end up making it a lot worse, and unintentionally coming over as if you are a very anxious person and people wont take you seriously. You are way to focused on PPMS. I didnt even know about PPMS when i started i just thought MS was MS.

I still dont understand what spasms are. You came here as your scared i get that, but sometimes you have step back and think well i am still here its not got worse, and take time away from worrying about it. i decided if it was ms IT WOULD show itself and it did. Mine was a combination of ON and sensory left sided weakness.

all my tests over time proved MS. PPMS and ON do come alongside.

so my advise for what it is worth is come off and just chill out enjoy the holidays soon to start have a break off from google and forums, and just be with family have some fun. If it is MS it wont be going anywhere and you will have had a break from worrying about it, enjoy a bit of life, and if your still worried start again in the new year, its only a month. If it is MS it wont get worse. but you can have a break from the worry of it ok.

I did that years back and i can tell you i felt so much better then blam a new episode of ON hit me like a ton of bricks just being in a hot restaurant at my sisters birthday, then i had another VEP test and i got my diagnosis. so my not worrying about it i forget to be cautious, and sneaky it came back with a vengeance lol. xxxxxxxx I used to be a great speller and now i am totally dyslexic so i apologise if sometimes my writing makes no sense. weirdly enough all my friends with PPMS have problems now with writing lol. thank goodness for spell check. x ENJOY your xmas.

the more you worry about this the worse it gets.

15

If you had an MRI four months ago and it was clear seems very unlikely to be MS especially as you said you had these symptoms before that was done.

what have they offered/ said to do next?