Last reply 3 months ago
Can RRMS present itself differently?

Hello, so I am currently still undiagnosed. I have been having symptoms since August so 4 or 5 months. My neurologist has tried to say all my symptoms are anxiety and that it’s not neurological, I know this isn’t the case. He also didn’t do any texts except the reflex one with the hammer, I know from what I’ve read on here that a lot more tests should be done than this.

My question though is, can RRMS present itself in a different way? I have a lot of MS symptoms but I haven’t had an attack like people with rrms seem to. I have a fine tremor, pins and needles and numbness that are intermittent but daily, burning patches, I get pain in my legs, knees, feet, lower back, and bum, I get muscle spasms/twitches too and I also have double vision and nystagmus both of which are intermittent. I know a lot of symptoms mimic MS and was very open to it being something else but after researching everything I can only relate fully to MS. I know I’m not a doctor but I also know my neurologist didn’t do enough Tests to say that it’s just anxiety, I wasn’t even anxious or worried when this all started they just see anxiety on my record and jump to that.
Not even worried anymore, just frustrated with the system.

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ariana98
3 months ago

also just to add, this all started when my knee stiffened and was painful to move, my legs then started getting pins and needles and numbness and went weak, this was all over about a week or two and at one point I could barely walk my legs were so painful and weak, this then improved but I still have all of the symptoms I mentioned above. I know people with rrms usually have half of their body go numb or an attack of really bad double vision and then they’re fine which obviously isn’t the case for me so I am confused about it all really.


citizenk
3 months ago

Hi There, So I’m 13 years diagnosed RRMS & the only real way you will truly know is from an MRI & or Spinal Tap/Lumbar Puncture, there are some other sensory tests that I did where they attached electron pads or something of that nature, to my head & made me watch images on a screen to test my brain activity or something but the Spinal Tap & MRI are the two main test that will determine whether you have RRMS… I am also not a medical professional but I do speak from experience. Hope this helps.


itsmewithms
3 months ago

The MRI and sometime Lumbar Puncture are the testing standards along with an exam…this lays out the steps – https://www.youtube.com/watch?v=0csvVXatlFo

More info will also be on the MS Society pages of all the various countries as they may all have different protocols-

Good luck – hope you get some answers-


itsmewithms
3 months ago

And yes- while “most people” get a certain set of symptoms they vary widely and that is why diagnosis can be so difficult- and our symptoms can change over time, typically with new symptoms appearing and some “old” ones fading away


stumbler
3 months ago

@ariana98 , go and have a chat with your GP about the Neuro’s dismissal of you. See if they feel the same way.

You are entitled to a second opinion.

But, maintain s symptom diary, so that you are able to create a short and concise list that you can pass over at any future consultations :-

https://www.mstrust.org.uk/a-z/diary-symptoms

I had a very dismissive neurologist too to begin with but a fantastic GP who wouldn’t let things go. It actually took a series of MRI scans, a progression of my symptoms and nearly 2 years of being sent back and forth from consultant to GP before I managed to get my diagnosis!!
I hope that things are much, much quicker and easier for you. Definitely go back to your GP and get them on side. Good luck, whatever your final diagnosis may be x


mavisdavies
3 months ago

Hi @ariana88 I feel your level of frustration in feeling you are not being listened too or your symptoms taking seriously. We know our own bodies and also we are not text books. Definitely get your GP to make a referral for a 2nd opinion and maybe do some research on specialist MS neurologist in your local. Area that actually listen and look beyond the obvious and do what is needed.
I have had a similar experience with a neuro who was not only unprofessional but rude too and found I’m not the only patient they have treated like this.
Good luck and don’t give up as you know your body better than anyone else.


mavisdavies
3 months ago

Thanks @matthew79 I will check out his videos but I’m in the UK.


vixen
3 months ago

There are a fair few posts on HSCT on this site, reporting varying degrees of success after a few years. It can be effective, but one can’t do anything about genetic predisposition so there can never be any guarantees, which is part of the risk factor to weigh up


rel12
3 months ago

Hi @ariana88 ! 🙂

It is always annoying when doctors are just not on the same page as you. This also happened to me but I actually have never heard of MS and would have never thought that I would have that. For many years, weird things were happening with me but would usually put an excuse like “oh this is from the accident I was in…I lost weight once I stopped eating fast food… ” so many more. I had to go through doctors and complete tests in order to figure out what was happening. Not that I was happy when I was diagnosed but it gave me the answer that I have been needing for years, it all made sense. I recommend that you continue to search for another neurologist because you never know what they will say. Go with your gut and continue to look for answers. Good luck!

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