Hello, Confused, filled with questions. Newbie.

Welcome and introductions
1

Hello there! Newbie here, not even sure what to say but I have questions…
My name is Lille ( F32) live in Costa del Cornwall…

My questions mostly relate to time-line and such I guess.
I am currently just in denial, confused and worried.
Let me tell you about what has been occuring so far.

It all started back in end of Feb 2024.
I had pins&needles in both feet and 1 leg that lasted well about a month or so.
Other than the pins&needles feeling I also had numbness in private area and some parts of my leg ( I could pinch hard and not feel any pain at all ). I dont like wasting GP time so at first i thought it is just some random body reaction. After about a week and a bit my partner became concerned and said I should seek advise from GP. I did that they came back to me after 7 days of asking for an appointment and checked me over, took some bloods and then said they will request a spinal MRI.

1st of April i lost vision in one of my eyes, is started with floater for few days and then full eye, couldnt see anything that just a white cloud. Went to A&E, then I was seen by eye specialist and they said that they will send me to head MRI, and then he said " its optic neuritis, i am sure your vision will come back but i think you have MS"… ( well i was not ready to hear that. )

My vision came back end of April.

I had 2 MRI appoints in May
19th May Head
25th May Spine

23rd of May I saw another eye specialist who was talking to me about my MRI and said there is some lesions in my brain and she will refer me to Neurology, when i asked is it MS as her colleague said she was dumbfounded and said " This is not our speciality, we can not say what it is, it is the neutologist who will let you know and do more tests"

on the 30th of May I was contacted by my GP regarding the spine MRI and he said " Some physio and weight loss should help " so he referred me to 3 sessions of physio, by this point i started getting pins&needles in my left hand and asked if these are all related and the GP said no.

pins & needles in my left hand lasted for over a month.
Currently i have pins & Needles in my right hand and its been going on for over a month.

Up to now I have been living in confusion as one says I have MS and then other said that this opinion should of not been shared.

Was in A&E again few weeks ago as now i have gallstones and they have put me on waiting list to have my gallbladder removed.

I finally had me Neurology appointment on the 18th of November 2024.
He checked my movements and then he said that he is sure I have MS and he would like to put me on medication this side of Christmas.
He said bloods will be taken today, MS Nurse will be in touch with you, we will book another MRI and he and he will add some links in the letter regarding MS. He also said I dont think it is necessary to have a lumbar puncture but if you wish then we can do, to which I said " if it is not necessary then no need."
In addition when I mentioned my gallbladder, he said he will speak to the surgery to try and bring it forward as he would like i had it done before i went on meds.

It is now the 28th of November 2024…
I have had no letter from the Neurologist to say what we discussed, MS Nurse has not contacted me, I have not heard about any of my blood results…
Only thing I know is that I have an MRI for brain volume & whole spine on the 21st of December 2024…
I have not even heard from the genera surgery team to find out the date for my gall bladder removal… the surgery people put my on NO fat diet and before the surgery i need to do liver reduction diet for 2 weeks…

I just feel like my life is falling apart. I feel like my life is paused as i dont know what happens when… All i want is to have some comfort food once i heard the Neurologist about my diagnosis but all i can eat is boring no fat food with exception of chicken breast.

I am sorry for the long text… Only people who know is my partner and his parents ( we have 2 kids under 5 and due to hospital visits we need them to look after the kids. ) and 1 of the work colleagues ( i work remotely… ). It is nearly xmas so I dont want to ruin my families xmas by telling them. And… I have no friends ( other than my partners friends but I am not that close with them that i would speak about this personal stuff. )

I still feel like there is a chance that i dont have MS and it is just a dream, does that make sense? I mean i dont have letter to confirm it in my hands and until then i dont think I will believe it.

How long did it take for anyone to be put on medication? What were the side effects? ( I am scared of weight gain, i am obese ( 5ft1 90kgs ) and i have been trying to lose weight and i dont want all my hard work to go down the drain.
How long did it take to receive the letter from Neurologist after the appointment?
Do you ever find out about the blood test results that Neuro ordered?
When will the MS Nurse contact?

I check the NHS app daily ( more than once ) as I am so unpatient… But as it was all done in hospital then they have not shared that on the app or atleast not yet…

As I feel my life being on pause I can not plan anything, i even had to refuse to go to Dubai work trip as i dont know what is going to take place ( have skipped it for few yrs due to kids and i was so excited for 2025 trip which now is not happening for me. ) , my sis has bday end of Jan and i also have had to say that sorry i can not come and lied it was due to work.

I am struggling to concentrate at work and that i have struggled for months now, well since the eye specialist share his opinion and now that neuro has said it i have struggled more.
I went from full time to part time in June due to the vision loss scare and wanted to spend more time with my kids and wanted to try and make friends which i still have failed at ( the make friend part ).
I see that my partner sees how I am annoyed about everything and after the Neuro my partner was sad so i tried to cheer him up but i am starting to lose any positivity in myself. My work is often stressful so on top of the anger of waiting and living what still feels the unknown the stress from work is just making me angrier.
I just want answers :frowning:

I have read out about MS a bit… is it really true that my life expectancy is now 5-10years shorter?

It also says that DVLA needs to be notified, when i need to do that?
On top of that it says car insurance will need to be notified, does that mean the cost will be higher?
All of this is just so worrying.

Apologies again for the long rant and any spelling mistakes ( English is not my first language )
Thank you for reading

2

Hi there im also new to this site I was Diagnosed in2018 with ppms it took about seven years to get diagnosed I told dbl first they gave me a three year licence which I had to give up it didn’t effect my insurance I see neurologist every six to eight months I haven’t seen or heard from ms nurse in all this time hope you don’t have to wait so long to hear from yours good luck

3

That also sounds horrid – I’m sorry you’ve been having such a rough time. I know that’s the uncertainty is hard to deal with as is poor communication and delay, and yes, most assuredly I recognise the ‘hoping to wake up from a dream’ bit! It’s a 25-year-old dream in my case… I also recognise the weird feeling of isolation from the world as it gets on with its business while one wrestles in silence with a new and troubling change. It’s terribly bad luck that you have to have gallbladder surgery on top of all this, but I suppose getting that out of the way will at least deal with the easily solved problem and make you feel better, which is very important.

Hang on in there, I hope that you reach calmer waters soon.

4

Hello. Please know that your are far from the only one to have experienced the very unsettling experience of waiting for formal diagnosis and starting treatment. There is a horrible time which all of us recognise as being ‘in limbo’. In my case I can’t remember how long the ‘limbo’ period lasted but I do remember that 18 years ago I was pestering the relevant hospital department with phone calls and demanding to know when I would get formal confirmation etc. My advice is to try not to get frustrated by the seemingly endless delay but phone the neurologist’s Dept sometime in mid December to find out what’s happening.

Like you I started with some pins and needles and then optic neuritis ( I lost pretty much all sight in my right eye. Over a period of a few months my vision did recover).

Again I can’t remember how long I had to wait to start treatment (maybe 1-2 months). I was put on Avonex - one of the first very few treatments . A weekly injection that leaves me feeling a bit rubbish for a day or two but I’ve had no serious side effects at all.

I was diagnosed with Relapsing Remitting MS. My experience of it has been that for about 8 years and other than the weekly injection I basically forgot I had MS and carried on as normal. I later began to experience problems with my right leg. This has got worse slowly and I’m now not able to walk continuously for more than say 10-12 minutes. Apart from that I’m OK and enjoy life (my wife and I have spent the afternoon deciding where to go on our next holiday).

I’m pretty sure that the data on life spans of those with MS largely pre-date the creation of disease modifying treatments/ drugs ( of which the many new ones are more effective than the older ones including the one I’m on I.e Avonex).

My other and fairly strong advice is to do whatever you can to avoid stress, calm your stress and anxiety. Stress tends to fire up your immune system and is not good for those with MS so please, please do try meditation, mindfulness, relaxation, soothing music - anything!

There is a lot of guidance out there on diet, Vitamins D, B12, exercise, relaxation for those with MS. I’ve got a lot from the Website and book of Overcoming MS ( by an Australian Professor of Medicine).

Best wishes.

5

Hi lovely, I echo what Hank has said above. I was diagnosed in 2014 after 5 days of extreme dizziness and vomiting, following which I experienced the pins and needles you’re describing. I was very lucky as my GP lived with someone who had MS and referred me for an MRI, which I ended up having done privately to speed up diagnosis. I know that for others the diagnosis process can take much longer. I have RRMS and have lost some sensation in my legs and regular experience fatigue. The first few months after diagnosis was the worst as I was adjusting to the news and to losing some sensation in my legs/feet and relearning balance etc. I was put on Tecfidera, a tablet twice a day, within 6 months of my diagnosis and my symptoms have barely changed since then. I try to avoid stress as much as possible - I’m a real stresshead so this presents some challenges! - and use an app on my phone called Finch for mental health, which is free, to schedule exercise, meditation, practice gratitude etc.

I think the diagnosis bit was the very hardest for me, and like Hank, I’ve been lucky in that most of the time I don’t really think too much about having MS. Go easy on yourself and don’t be afraid to chase up the NHS teams, it’s hard to generalise about the NHS as provision depends on where in the country you are, but I am quite active in staying in contact with my MS nurse and she has been a real help to me, so I would chase that with your neuro team as your first step and ideally your MS nurse will help answer a lot of your questions and worries. Good luck lovely x

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6

Bless you, you seem to be going through a rough time. Time frame initially from onset symptoms to diagnosis was relatively quick. I started of with optic neuritis however it never really got better. Optic nerve showed alot of signs of damage. Then two MRI scans within a month of each other showed time and space category for MS diagnosis. Once I got MS diagnosis, I didn’t hear from an MS nurse for two months. Two months later I started treatment. Even though I haven’t seen my Original MS nurse - MS nurses taking my blood in different clinics often answered my concerns. That happens every three months. Mind you I haven’t seen or heard from my neurologist since February this year. Review was supposed to be on 10th December but cancelled. So I don’t know when I will be seen. I have had two falls in space of three weeks and I’ve asked for advice from MS trust forum helpline. They advised me to go through patient support and ask for an emergency appointment. You could do this I am sure for advice when you will be seen. Good luck x