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Not yet diagnosed and lost

Hello Everyone, I’m new to this site and a friend of mine who is a nurse recommended here as a good source of support. At the beginning of last summer I noticed a change in my eyesight, specifically that my right eye was blurry. Then the tiredness hit, not normal tiredness but the feeling of swimming through wet concrete. I also started to have issues with my balance but I’ve always been clumsy and continued with life, I then began having pins and needles across my tummy, which then spread to the rest of my body, my skin feels as if it is continually tingling. I repeatedly put my symptoms down to age (38) shift work, caring for three children one of whom is disabled etc. My eye sight worried me though so I booked to see my optician and I payed extra for a scan of my eyes. My optician called my GP once my exam was complete and said I needed an urgent referral for an MRI. I had my MRI and my GP saw me face to face, he told me both my optician and himself felt that my symptoms pointed to MS. He referred me to a Neurologist, the Neurologist has come back to him and stated that they will not see me as this is my first time with these symptoms and it’s most probably just anxiety. I can’t go on like this, brushing my teeth feels as if I’m being stabbed in the face, I can’t even boil the kettle for a brew because my fingers become numb and I’m worried I’ll scold myself. Where can I go from here? I work on the railway and the company DR won’t allow my return until I’ve seen a neurologist. I’ve cried this evening because I couldn’t even play with my boys, because of the pins and needles in my hands, and I just don’t know where to turn. Please help. Thank you in advance xx

Sounds to me like your best advocates are your GP and company doctor. Make it easier for them to lobby a neurologist than to put up with you making a fuss. As someone else on this sit e said "it is your central nervous system under potential threat not theirs and once damaged that’s it. So best to be awkward in trying to avoid unnecessary damage. Good luck. Mick

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Has this neurologist seen the MRI scan, or is this just based on a list of symptoms? Was it an area / hospital trust ‘triage’ system, rather than an actual named neurologist? My guess is that you’ve been ‘triaged’.

I mention this ‘triage’ system as that is what seemed to happen in my case. This was for the York Hospital Trust, though when I was deemed suitable to warrant an appointment I had the option of more than one hospital trust, so it maybe more widely based. I don’t know how others work, but it may be it is that type of barrier you have hit. If you have hit this type of barrier and an ‘advice note’ is given to the GP, if the GP decides that s/he is not happy with that it appears that they can insist on a face-to-face appointment, though.

This might help explain what is going on with regards a triage system. This is all new to me too.

The one shocking statistic I noticed is that:
“The UK has about one neurologist per 115,000 people
compared to the continental European average of 1 per 15,000.”

and

“In NHS Lothian, one face-to-face appointment is costed at
£129 and is allocated 30 min. Whereas, in this same time
frame ‘advice only’ can be given to 10 patients at a cost
of £12.90 each.”

In other words it looks as if you have only been considered worth spending £12.90 on. 3 minutes of someone’s time. Hmmmm …

As Mick has said, get your GP and company doctor to lobby for you.

Failing that, if you can afford an initial private appointment, that might be an alternative route, and I understand from others is in the region of £250. You’ve had an MRI scan so that is one large cost saved.

Excellent advice given above. Talk to your GP and company doctor and get them to fight for you.

Hi i am being naughty but when you post can you do clear paragraphs i find it so hard to read block text thanks.

First off the mistake was made by your GP and optician they have no right to suggest MS on what findings?

Jeez i had eye issues back in 2000 and it took until 2016 for a diagnosis.

You say you had an MRI who read the results only a neurolgoist can tell you if you have MS.

numb fingers and weird stuff does not = MS.

fatigue etc can be down to a lot of different things.

The more you worry which you will do now someone has mentioned the 2 letter word the worse you feel.

Non of this sounds in the right order. Your GP should refer you to a neurologist. you have had an MRI, who has read it?

The opticien again has no right to say it could be MS. I have optical neuritis and inflammation does not always show on scans thats the first thing. for ON you need to have VEP tests which are ordered by nuerologist.

are sorry i see you were referred to neurology (missed that bit as i struggle with block text). They are so busy at the moment they must have seen your MRI one would have assumed.

Now you can get referred and go privately it doesnt cost the earth i would try that route. I got seen in 2 days lol. from 4 months wait. The neurologist should then do a full neuro exam and check your MRI.

What the neurologist is saying is pretty correct they are new symptoms and can be down to anxiety so its kind of wait and see what happens.

talk to your GP ask him to refer you again but privately and you should see somene who might be less stressed themselves.

Are you on your own or do you have a partner. Sounds to me you are overworked and very tired. xxxxx 38 is NO AGE. I am 70.

can someone take the children off you for a few days so you can gather your thoughts and rest up a bit? xx

Hi Mick. Thank you, I really appreciate that. My little lad already has a rare genetic syndrome and autism and I’m struggling to care for him. My husband is being so supportive but he has to work. I’m going to ask to speak with the company dr again and hopefully they can help further.

Yes, company doctors can be really useful. Many years ago, and after multiple futile pleadings with the GP and A&E, it was the company doc who finally believed me and wrote the X-ray referral that revealed that it was in fact have a broken leg rather than hypochondria. :slight_smile:

aint that the truth… after multiple visits to GP’s about problems with my ears and getting nowhere, it was the company doctor who found cholesteatomas and arranged surgery to sort the issues out.
M

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Hi I too am new to the forum so a real newbie welcome to the place you never wanted to be. Someone else’s words.
I am 5 year’s since my diagnosis of ppms now in a wheelchair full time and surprised how quick I have deteriorated but the point is get seen by the neurologist my GPthought I was anxious wrong I wasn’t… Hoping you will be OK but seek help you are not alone and if you come back with a diagnosis of MS join the club :crossed_fingers: