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 :(

Sorry - i have posted this in autoimmune board but not had any responses so reposting here - hope thats okay

Both my hands kept going numb so my GP suspected MS.
Like you I was referred to musculoskeletal first and there was a long wait.
I paid £250 to see a neurologist privately.
It turned out that it was in fact musculoskeletal.
If you can find £250 you’ll be glad you did.

@NotJackieWeaver thank you for replying. I have considered this but the cost of then also paying for tests and investigations will add up

I needed two tests.An MRI and a specialised kind of ultrasound.

After the £250 consultation the neurologist put me back in the NHS queue with instructions as to the tests needed.

So it’s likely you only pay for the first step.

@NotJackieWeaver thank you so much - thats good to know. I will look in to this.

Yes do - the reality is that it moves you up the queue

It might be worth looking at both the MS Trust and the MS Society websites. There is lots of information there.

@NotJackieWeaver thank you so much, ive just made an enquiry to get a quote.

@TeaSoakedDisasterMagnet thank you for replying and for suggesting the websites. ive done this but just wanted to get some first hand accounts of initial symptoms.

Great

I had episodes over the course of a week and was taken into hospital. I would lose my speech and my face would drop as if I’d had a stroke then be back to normal. After 5 trips to the GP in a week they sent me to A&E and after a couple of days in hospital I had an MRI and was diagnosed with MS. I had had an mri for something unrelated 10+ years previously and unbeknown to me had been flagged then.

I had had several relapses and symptoms over the years without realising going back to glandular fever in 2002. Try not to worry. Hopefully a neurologist will put your mind at rest.

@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?

Yes do - the reality is that it moves you up the queue
Less and less so as consultants are now challenged by transferring their care to the hospital from their private practice. They might have to refer you back to your GP and you could be back to square 1. If you GaP has genuine concern, he should refer you directly to Neurology.

I went to my GP with classical symptoms but he said he didn't think it was MS from experience. It took going 3 times over 12 mo the for him to finally refer me. He was right all tests came back normal and the symptoms which were caused by anxiety disappeared as soon as I was told I was in the clear.

My experience was in 2015 if that helps at all

@dontdisturbmenow thank you for replying. My gp said it all sounds very general and non-specific but i do feel that its more on the left side now. She also said that this is the only route to get a referral to neurology so thats that really. I hope the private appt is something that helps

What were your symptoms if you dont mind sharing?

@NotJackieWeaver thank you

Disturb,
I don’t think OP would be back at square 1 as GP would have neuro’s diagnosis?

@r1911 I’m in a similar situation to you, so I know how frustrating it is. I have been referred to a neurologist from a physical therapist I saw back in December with a problem with my left foot and as the same as you I have to wait for them to contact me as they are not doing face to face appointments at the moment due to covid.

@Biglumpycustard im sorry youre also going through a worrying time too, i hope you are able to get some answers soon. Its so difficult worrying and waiting

What were your symptoms if you dont mind sharing?
It's going back almost 15 years ago but from recollection it was pins and needles, numbness, some weakness and balance off set.

I once had a very weird sensation when I had one foot feeling hit when the other was freezing cold. I panicked when the eye sight in my eye dropped suddenly, hence at this point being convinced it was ms.

I now know that my eyesight drops when I suddenly gets an anxiety episode. It happened quite a few times since starting the perimenopause. I never thought anxiety could have such an impact on body parts such as the eye but it does!

I don’t think OP would be back at square 1 as GP would have neuro’s diagnosis
You can't have a diagnosis of ms without a number of tests so very unlikely they would have a diagnosis at this point. Even if they did, they would have to be referred to a new appointment with the neurologist. It would just state that OP had a private diagnosis.

@r1911 it’s just not fair, I think they should still see patients face to face.

@dontdisturbmenow thank you so much for replying. Im so scared and the worry is constant - im driving myself mad with worry. I just want to know - the more i think about it the more symptoms i have 😞

@Biglumpycustard i agree i wish they would see us face to face. Its so hard at the moment

In my case the neuro confirmed it was Not MS from observation ( he had me back 6 months later to check he hadn’t screwed up) so it was a great step forward even before tests

This idea of not jumping the queue is great until you’re the one with weird symptoms :(

@r1911 Does your symptoms affect your day to day life. My foot problem does.

@Biglumpycustard some of them do - my main symptom is feeling an internal tremor on my left side. Its not visible and i cnt feel it with my other arm but i can feel it internally and its so scary and strong when i lay on that side and rest on my arm. I also have weak legs and altered sensations on patches of skin. Im sorry your foot is impacting you too - i really hope you can gt to the bottom of it without having to wait too long.

@Lingle did they do any tests? What were your main concerns/symptoms if youre okay to share?

First recorded symptom was trigeminal neuralgia which triggered an mri scan as they are recommended in cases of TN under the age of 40. The mri showed lesions in my brain so I had a lumbar puncture which confirmed MS
Looking back i had other symptoms previously but they were never connected. Pins and needles in my arms and legs, lost sight in one eye for ab evening, an episode of about 2 weeks where I kept falling backwards.
I now have fatigue, pins and needles, a numb kneecap and vertigo

@FrankieDettol thank you so much for replying and sharing your experience. Im sorry you have things currently impacting you. If youre okay to share, is the kneecap completely numb or altered sensations?