Suspected MS

New diagnosis and before diagnosis
1

Hello all!

I’ve just joined as I am waiting for a neurologist appointment and wanted to share my symptoms and journey I guess to see if anyone has had anything similar.

First things first, I know I wont know for definite that it’s MS until I have seen the neurologist - thought I’d put that out as a disclaimer.

Anyway, here goes…I have been struggling with migraines and headaches for years and always been told to go and get my eyes checked which I do and I do have glasses which I use for computers/driving but my eyes are otherwise healthy. The migraines tend to start in my eyes and spread and knock me out for ages. I have also been struggling with tiredness.

I noticed last year that my left thumb seemed to have a mind of its own - it would tremble really randomly but I tried not to be concerned about it. About three months ago I started to get this strange burning sensation on my right side. I couldn’t fathom what it was - my skin was fine, wasn’t red or sore and it felt like it was coming from within my skin. It would happen on my right forearm and the right side of my neck. This is what prompted me to speak to my doctor as it was starting to really affect me.

My doctor listened to my symptoms and sent me for some blood tests. She said everything came back okay apart from one - an inflammation marker. She asked me more about my symptoms as I had been having a spot of dizziness too and then she said she was going to refer me to a neurologist as she suspects I have MS.

Right now I am waiting for my appointment. She did say that there is a long wait list. Since then, the burning has gone but I’ve had more random symptoms and when I look them up they all point to MS.

I had a rush of what felt like ice going from my head all through my body like someone had injected ice into my veins, strange popping sensation in my head, also in my legs, swallowing issues, my left shoulder spasming, I have been feeling very stiff, tired and my hands have been painful. I have also been struggling with words to get out what I mean to say and remembering things.

Has anyone else had anything similar? And has anyone got any advice for what to expect at a first appointment and anything I should do before hand? I am quite nervous.

2

I have weird burning sensations too but my MRI was clear so I don’t know what to do

tired of going back and to be honest, don’t even want to know at this point

but I have burning sensations, pins and needles, “cold” sensation and electric shock like pains

search “functional neurological syndrome” and tell me what you think…

3

hi Kathy

Your symptoms resonate with me- I approached GP mainly with sensory symptoms, which have been on and off for around 7 weeks now. I had sensory probs last year and no onward referral made as felt to be ‘isolated’ but onward referral been made now. LIke you i am also putting things together re other things that appeared isolated but may well point to MS (lightheaded, strange sensations in face which i blamed on Migraine too). My migraine activity has got worse and more severe too - what was aura i think now is prob symptoms. I went to neuro before for what i thought was focal aware seizure - they said migraine likely (though have never read such symptoms…). However, all roads pointing to brain…

Interesting you GP said she thought you had MS, mines wouldnt say it despite my meltdown in the surgery - though maybe thats why. I asked how she could explain symptoms, but she couldnt as otherwise there would be maybe 6 different conditions at same time (bladder been playing up too). So am waiting for appt to - and its torture

Think process is neuro consult - where presumably they will ask questions, patterns symptoms i assume and then decide to follow up with MRI (i would hope). What appears common is any diagnosis takes forever and they use MacDonald Criteira which seems to need 2 lesions on brain ad 2 seperate episodes so if first ‘episode’ might be watch and wait.

My GP has also done bloods and neuro exam - slight weakiness in left side, that i havent noticed, but she did. No blood issues either. Am sure like me you go between trying to find reasons for symptoms that ARENT MS then get the sinking feeling there is no other explanation :frowning:

4

I’ve had the ice in veins feeling, the stiffness and also the eye pain. Currently waiting for lumbar puncture as my next step. First Neuro i saw wanted to put it all down to anxiety so only advice for first appointment would be take a list of all your physical symptoms and don’t expect too much by way of them seeming concerned. I was amazed by how blasé he was. I see a different one now who has a much nicer manner but is still very cautious about saying anything like ‘it’s probably going to be down to ms’ seems they want to explore literally any other option first. So I guess what I’m saying is the appointments can feel like a bit of an anti climax if you go in hoping for answers. I am sure they will send you for mri etc though based on your symptoms and so long as they do that, that’s all that matters. Good luck and let us know how you get on. Hoping for an alternative explanation for you xx

5

Hi Katy Kooka Burra

write a list of your symptoms with when they started, if they got worse/changed/went away.

add approximate dates too.

If you have a trusted friend who could accompany you, ask him/her to prompt you if your words dry up.

good luck

Carole x

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I had a quick look but I guess that comes from trauma? I dont think thats what ive got to be honest becuase i had a blood test which confirmed inflammation. have you had blood tests? hope they get some answered for you.

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Yes I started writing my symptoms down on my notes app but thats a good idea to also include when they went and dates etc as some symptoms have gone and then come back and some new ones popped up.

Thank you for your advice :slight_smile:

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Thank you for your reply EML -

To be honest my doctor is really good with getting things ‘done’. My boyfriend is registered at a different practice and even though he had blood tests that confirmed he had gout, they wouldnt diagnose him with it due to his age. its taken ten years and alot of agony to get a dianosis.

the blood test i had was a full blood picture but also one specifically testing for inflammation - when i got my results it was another doctor who initially gave me the results and said that this blood test is a specific one but she put me through to my actual doctor who asked more around my symptoms and said she thought maybe ms so she was referring me to the neurologist but she did say not to google as a lot of misinformation and to try not to worry about it as it may be something else. She also did say the wait time would be awhile.

Yeah i try and find other reasons but some of the symptoms I get are just so weird and something i havent felt before i cant explain.

Hope you get an answer soon :slight_smile: take care.

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hi Charl84 -

anxiety really? oh thats terrible - surely a doctor wouldnt refer you if they thought it was anxiety? thats so bad of that doctor to be dismissive really. to be honest the neuro department at my local hospital is supposed to be really good so i hope i dont run into the same kind of issue.

have you had your mri now then?

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Hi Katy Kooka Burraa (love the user name by the way :slight_smile:

I agree with the others , make sure you keep a diary of your symptoms , with dates . Also put some more detail in there about whether the symptoms have eased, gotten worse , disappeared etc . This diary is useful for you and for the neurologist. Make two copies of your diary , keep one copy for yourself . As for what you will expect at your appointment, the neurologist will go through a history of your symptoms with you, they will probably want to examine you by doing a series of neuro tests. They will then more than likely book you in for an mri scan. They may also order more blood tests .

Getting diagnosed , and the whole diagnosis process can be a long one as the doctors need to be sure before labelling you with any kind of condition. In the meantime please don’t go google mad and spend hours researching your symptoms, this will only stress you out even further , and there’s lots of misinformation online.

I’m presuming your original gp tested you for your vitamin levels for Vitamin D3, B12, and your iron . A vitamin deficiency can also lead to an increase in neurological symptoms.

Take care ,

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Ah thank you! Your comment has been very helpful in regards to what to expect from the appointment. I am trying not to google but its so hard these days to not google every symptom that pops up.

Yes I was tested for vitamin levels and i had a normal b12 and iron but they were on the lower side of normal so she put me on iron tablets and my iron has been boosted now but the symptoms have continued.

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Hi Katy

You should keep in your mind that while many, of not all, of your symptoms can occur in MS, there are other diagnoses that look like MS. Your GP isn’t really able to diagnose MS based on a physical examination and a marker for inflammation in your blood. If it were that straightforward, life would be easier and diagnosis simpler for so many people.

The information given to you by your other respondents is excellent. Writing a diary of what happens to you and when is pretty vital. If you think back as far as you can to when your first symptom occurred, keep note of the date and what happened with that symptom, did it completely or partially resolve and over what timescale? Such a diary will be invaluable.

You should expect when you see a neurologist a verbal discussion of what has happened to you and when. It will include your own and your family history. I’d expect you to be asked about the symptoms you’ve experienced (this is where your diary comes in handy). The neurologist would then normally do a physical examination. This includes reflexes, pin prick tests (what can you feel and what can’t you), things like whether you can tell (with your eyes shut) if your big toes are bent forward or back, eye movement, hand to eye coordination, and many others.

If s/he thinks there is a neurological reason for your symptoms, you’ll be referred for further tests. It’s possible at this point for the neurologist to have an idea what is causing your symptoms, but this isn’t always the case. Even if they do suspect MS (or anything else), they won’t always tell you. If MS is suspected, I’d expect an MRI, possibly you’d also at this point have a lumbar puncture, visual evoked potentials and maybe nerve conduction studies among other tests.

Don’t hang all your expectations on MS. It may not be. Plus, even if it is MS, it can sometimes take a very long time to be formally diagnosed. Other diagnoses could include Lyme Disease, Hughes Syndrome (aka ‘Sticky Blood’), vitamin deficiencies (especially D and B12), or indeed Functional Neurological Disorder (which someone else suggested - if you look at https://fndhope.org/fnd-guide/ you’ll see that it does in fact share many symptoms with MS and is not always the result of accident or trauma).

During all the investigations, you’ll also have the Covid restrictions to contend with. Many neurologists are having to conduct appointments via video call, or there could be a longer than usual delay for the initial appointment.

I hope you do get an answer soon and don’t have to hover in ‘limbo’ for too long. It’s a horrible time and deeply worrying for you.

Sue

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Yeah I was pretty annoyed :wink: to be honest I think I just got unlucky with the doctor! Thankfully with one I trust now! I had an mri in March which was clear, but there was some confusion over the result. I didn’t believe it and asked for a copy of the report which stated part of the machine didn’t work properly on the day. They assured me this was irrelevant in terms of looking for lesions but luckily had another one done in June and this one did show two area of high signalling (white spots) which my new neurologist won’t commit to calling lesions yet I’ve also had an irregular result from my VEP test so not looking good. LP is the next step, having that Friday.
I’m sure you will get someone nice and supportive at your appointment. I think/hope my first neurologist is the exception and not the norm! X

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Hi Katy, I also have been going through undiagnosed issues. Just wanted to mention Celiac disease as another alternative for you. If you are loading up on iron or B12 turn a replacement there is a possibility that you have malabsorption which can cause joint issues as well as nerve issues.Hope you have some answers soon :slight_smile: