Ms symptoms

[r1911]

Hi everyone

I just wanted some help - if you have been diagnosed or tested for ms please can i ask what your initial symptoms were?

I have posted before and am having some worrying symptoms - i have got in touch with my gp and the route to get referred to see a neurologist is through a physio assessment (over the phone thanks to covid) so i am on a long waiting list as its 8 weeks before i can even hope to have an appoitment with physio and then they will decide if they agree on referral to neurology and they have advised me they will phone me once an appt is available instead of me phoning to get an appt so it could be months for physio and then further months for neurology appt and then ofcourse tests etc

Thanks in advance for any help - really scared :(

@r1911 no problem. I drove myself mad waiting for my diagnosis so I understand how you feel. Its not numb all the time. It comes and goes but usually if I've knelt down, even for just a minute or two.
Wanted to also echo what a PP said about going private if you can. I did, for an initial appointment with a neurologist and my GP had referred me for an mri scan so the neuro looked out for the results of the scan and then moved me to his nhs list. It really sped things up.
Just to say too, MS isn't the end of the world. Obviously no one wants to have it but there are so many treatments available now that it isn't all doom and gloom

It is truly wonderful how most MS is so treatable nowadays.

@FrankieDettol thank you so much for sharing. It seems like there is def lots that can be done to help manage the symptoms and the condition and ita really reassuring talking to people with experience.

I had a physio appt on the phone today, got a text about it yesterday and they agreed its not physio related issues so will ask gp to refer me to neuro. I will call gp on mon and see what she says and of the wait is too long, i have got quotes and potentials for private appt.

Im just really scared

@r1911

I understand you being scared. The period of limbo that you are in now is the one most people with MS find the hardest. It is all about being at the mercy of doctors, tests, secretaries and waiting lists. So you feel completely powerless. Couple that with obsessive googling and it's a recipe for driving yourself mad.
I have seen lots of people over the last few years in support groups giving a list of symptoms that could fit with MS but could also be fibromyalgia, or FND. There is someone I know one person in a group who has been diagnosed with MS as a result of symptoms showing up whilst being treated for covid. Unfortunately the only way to get a diagnosis is to have an MRI, so I'd see if your gp would consider ordering one. They may well not, or not be able to depending on where you live but no harm in asking. Would get the ball rolling for when you see the neuro. Also try and list all of your symptoms as far back as you can, anything unusual as it may help build a complete picture.
Above all, try and stay strong. As I say a diagnosis of MS isn't the end.

@FrankieDettol Thank you so much. The limbo period is always the worst- i have written a list of symptoms and dates etc, hopefully will be able to see a neurologist soon.

The gp receptionist has made me a phone appt with the gp fpr tuesday so i will ask her when i speak to her about a possible referral, fingers crossed she considers it.

I really appreciate everyone who has taken the time to reply and share their experiences.

@r1911 hi, how have you been, did your doctor refer to a neurologist. I did ring the hospital to chase up my neurologist referral, I was told it’s an 18 week wait from the date I got referred, so shouldn’t be much longer now.

@Biglumpycustard hey, thanks for checking in, i really hope its not too long that you have to wait now 🤞 my gp did refer me but i dont know how long the wait will be.

I saw a private consultant but she said my gp would have to refer me the hospital shes based at to refer me for any tests through nhs. Shes based at a different hospital to where ive been referred and previously seen so i dont think thats going to be an easy option as my previous records are not at her hospital either. The current option is wait or pay privately but i cant afford the tests and then another fee to get the results from her. I would have to pay to see her to obtain the results and in all honesty she tried to tell me it was nothing based on just looking at me and no tests but couldnt give justification for my symptoms other than 'these things happen'

I was diagnosed 22 years ago. First symptom was optic neuritis.

@r1911 I’m glad the doctor has referred you, just hope it’s not 18 weeks like me. Like you, I can’t afford to go private wish I could it would be a lot quicker.

Hi op, I had an episode of optic neuitis in 2012 I was referred to the neurologist and for an mri scan but all came back clear so I was discharged. 2013 I lost sensation in my fingers (I worked in a shop and couldn't feel the coins as I was getting change out of the till) I had an mri which is how I got my diagnosis. Roll on to last year I had my first major relapse where I couldn't feel anything from the nipples down including upper limbs could not walk for two months. I then had optic neuritis at the beginning of this year so they decided to do an mri again to have a look at what was going on. I have numerous new lesions in my C-spine and my first ever brain lesion so I am now classed as highly active rrms.

@bbd72 hi, thank you so much for sharing. Im so sorry youve had such a hard time with it.

If youre okay with me asking, what kind of mri did they do the first time? Did they find aynthing at the time or only with recent scans?

Im kind of in a similar position with having had symptoms years ago and now again and the private neuro was very dismissive that its connected but im certain it is.

So the first scan I had back in 2012 was just a brain scan, when I had the loss of feeling in my fingers in 2013 I had a brain and cervical spine (this is when they saw I had spine lesions and was diagnosed) I was very much of the il be fine il be one of the lucky ones who never has symptoms; which I was for a while I tried a few oral dmd's but never really got on with them then they tried me on injections but they were awful. My partner and I spoke and decided as I only had very minor relapses to stop all treatment in July 2019 to ttc. 2020 I had my first major relapse which scared me but I was adamant that I still wanted to stay of treatment. I had another relapse earlier this year and it was decided as my ms was now highly active the positives of going onto infusions (which I am still allowed to ttc on) outweighed the negatives. Please feel free to ask me anything I and will try my best to give you an honest answer xx

First symptoms - burning smell in nose - about 10 years ago?
Vertigo and nausea so severe I was hospitalised - about 6 years ago
Optic neuritis (which was the clincher) - 3 years ago
Formal diagnosis straight after the optic neuritis (blind in one eye for about a month)
Been on DMT (disease modifying therapy - Tecfidera) for just over 2 years no and no relapse so far

Please do yourself a favour, try not to google, see your GP and get a referral. Treatments are now really effective and the support from the MS Society is fantastic.

Try not to worry, stress does nothing good for anybody. Not unless you're being chased by a bear in which case it's useful. But this is not that. :)

Oh yes, to have the diagnosis confirmed I had an MRI to check for lesions - and a lumbar puncture (which really wasn't that bad).

Had last MRI in April 2020 and no new lesions have formed so I don't need another one this year.

Hi OP, sorry to hear you are in limbo. My first symptom was INO (Internuclear ophthalmolplegia ), which caused double vision and I was seen in Eye A&E, they told me it could be brain tumour, stroke or MS.

My second symptom came about 18months later, it was (ON) optic neuritis. During all of this time I had MRI scans and lumber puncture plus tons of vision tests etc. Diagnosis was within two years thanks to such specific MS symptoms. I hope you get seen quickly to ease your worries.

WheelyMom, I thought my symptoms were a brain tumour. I had an excruciating headache whilst I was losing my sight - and the headache vanished once it was gone. It came back gradually over a month or so but it was a terrifying time and I really feel for anybody having to wait for diagnosis/treatment and getting shunted from pillar to post.

I have ms and was diagnosed after an attack of optic neuritis. Looking back the neuro could see it likely started when is was 16-17. I had nerve pain in my chest and then numbness in my leg, and some other things I can’t recall. I hope you get some answers soon @r1911

@LyingWitchInTheWardrobe

WheelyMom, I thought my symptoms were a brain tumour. I had an excruciating headache whilst I was losing my sight - and the headache vanished once it was gone. It came back gradually over a month or so but it was a terrifying time and I really feel for anybody having to wait for diagnosis/treatment and getting shunted from pillar to post.

It’s a strange disease but treatments have come on massively and often it’s about management of symptoms with a good neuro team to support you! IMHO, excruciating as it is, a lot of the time you have to take a ‘wait and see’ approach with MS, so try not to panic!

[quote r1911]@icedancerlenny thank you so much for replying. I really apprecoate you sharing your experience.

Im so sorry that you didnt know that it was flagged up on previous mri. What were your general symptoms before being diagnosed?[/quote]
I lost my speech and the side of my face dropped -all temporary so no one saw it! Happened once the first day, twice the next day until by four days it happened every few minutes and I was taken to hospital.

Gosh this brings up some very uncomfortable memories for me. I had some strange symptoms about 8 years ago - I would lose all the power/ strength in my arm, and it would just go floppy like someone had turned the power off (so if I was reading, for instance, my arm would just fall to my side). It would only happen for a few seconds, and then it would be fine again. That happened a few times to my right arm, and then the same thing started happening on the left as well. I was also getting pins and needle sensation in both hands.

I think my consultant thought I had a pinched nerve somewhere in my neck, but when I had an MRI it actually found a lesion which was a big shock.

Over the course of the next twelve months the episodes slowed down and eventually stopped altogether. I haven’t had any at all for what 6 or 7 years now. The consultant said he wasn’t sure it was MS, because it was presenting in an unusual way, but I’d really only know in time. That was a very hard message to hear, we all want certainty.

I wish you well OP.

@bbd72 thank you so much for sharing, im sorry youve had such a rocky journey. Wishing you lots of luck on the ttc journey and its good that theres a dmt that works while youre ttc 🤞 ive read lots of positive stories about the infusions helping with ms relapses.

@LyingWitchInTheWardrobe thank you for sharing and for the advice - ive def stopped asking dr google as it wasnt helping.
Im so glad to hear that the dmt is helping and there are options - always so nice to read positive stories ☺️

@WheelyMom Thank you for sharing. Im sorry you had such a difficult journey to diagnosis. Were you able to get a diagnosis from the scans and tests or through symptoms? What were the specific ms symptoms if youre okay to share? I think i have specific symptoms like left rib pain, altered sensations, buzzing etc and the consultant was very dismissive (even though she was lovely)

@Dizzywizz thank you for sharing, i hope youre doing well now. Must have been a relief to finally
Know.

@icedancerlenny thank you for responding to my question. Im sorry, that sounds so scary! I hope youre doing well now.

@Daisydoesnt thank you for sharing. I hope you never have to go through it again and i hope you stay symptom free 🤞 ive read about people who only have one attack and then never again

@r1911 How are you, have you heard anything about your neurologist appointment yet.

@Biglumpycustard hey, thank you for checking in, ive got an appt date in May 🤞

How are you? Have you got a date? How are you feeling?

@r1911,Sorry I’ve not got back sooner. I’m pleased you have a date, I’m still waiting, yesterday was 18 weeks from when I got referred. I do now wear a splint on my leg to help me walk it’s not perfect but least it’s took the fear of falling away. You will have to let me know how you get on.

@Biglumpycustard i really hope you get an appointment soon! Sorry youre having to wait so long, i know its hard not knowing.