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Advice please

Hi newbie here,I’m sure you’ve read lots of posts like mine,I’m looking for advice, my journey started about 7 years ago with painful,tingling feet,hips which has now progressed to pain in shoulders and elbows,had quite a few cortisol injections which don’t work anymore,the shoulders,elbows and upper arm spasms are excruciating and tinninitis.

ive had a rheumatologist appointment a few years back he did the test for fibro but said no and said I had planter fascilitis!

ive been back and forth the doc in the last few years with numbness of toes,pinky finger and fatigue,lots of blood tests,nothing the doc said fibromyalgia,had a few times where I’ve been so exhausted I haven’t been able to get up from the floor,widespread pain,felt like bee stings all over! Ive been to docs twice with inflammation of ribs on left side and pins and needles down my spine when putting chin to chest, I still have tingling in head,face and arms,my latest visit to docs was two weeks ago with trigamalgia neuralgia,boy that was bad,even went and had a tooth pulled but it wasn’t the tooth!

went back yesterday as ringing is still loud in my ears and have no taste buds,I asked if it would be possible to see a neurologist for the pins and needles and she said no as a neurologist focus on one part of a body as my problems are widespread it’s the fibro so have to go back for blood tests again she wants to give me,gabapentin/ampertrptilyne but I’m not convinced it’s fibro and I tried these a few years back and as I work in a school found they made me drowsy,can I ask to see a neurologist? Do you think I have grounds to ask ? Or should I accept the label of fibro? I just feel there’s more underlying going on and would like things ruled out. Any advice will be greatly appreciated !

The Hello

No, I don’t think you should accept a fibromyalgia diagnosis which the rheumatologist said you don’t have.

Pins and needles sounds neurological. Trigeminal Neuralgia (is that what you meant?) even has neuralgia in its name, therefore neurological. Tingling that becomes painful sounds neurological. Pins and needles down your spine when you put chin to chest sounds neurological as well. In fact that sounds like Lhermitte’s sign: https://www.mstrust.org.uk/a-z/lhermittes-sign Tinnitus can be neurological. Fatigue can be neurological.

Your post is actually the reverse of many we see here. More commonly, people say ‘I have many MS symptoms, how do I get a referral to a neurologist’. And we recommend they ask their GP for a referral to neurology, but that it’s likely not to be MS.

With you, I would suggest that you see a different doctor in your GP practice. List all of the symptoms you’ve had over the years and ask, politely but very strongly, for a referral to a neurologist. Try to put some kind of timeline together, which symptoms you’ve had and when. Include how long symptoms have lasted. If you can’t get a different GP to see you, go back to the original doctor but this time, take with you a print out from the MS Trust or this site with a list of what could be counted as an MS symptom see https://www.mstrust.org.uk/about-ms/ms-symptoms/signs-and-symptoms or https://mss-cdn.azureedge.net/-/media/69776bc14947479ea7cfc7b6258ccbb1.pdf?sc_revision=64c3ee8d05a94a78855fbf4c5343c5bc

Neurological problems are often widespread around the body. If you consider that our nervous system is connected to every part of our bodies, there are many, many symptoms that may be neurological. Certainly anything related to tingling and pins and needles. These sound like they are mild and gentle. But in fact they can be extremely painful. And do come under the general heading of ‘pain’.

Best of luck.

Sue

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Thank you for your reply, I have a blood test on 13 June and then a docs appointment a week later so will defo write a timeline and take it and print out the link you said about,thanks!

Went for my blood results all fine except vit d which has been low on previous tests,seen a different doc explained my symptoms on a timeline,painful feet,pins and needles,numb toes,two bouts of painful ribs which was treated,itchy all over,episode of not being able to put chin to chest without pins and needles down spine,and the newest which I had blood tests for was tingling in face,arm ,leg and neuralgia,even had my tooth pulled but it wasn’t that! IT was defo neuralgia, forgot to mention to him the ringing in my ear and bladder problems as he made me feel awkward! he was going to send me for X-ray on neck but changed his mind and decided to send me for a MRI which is 18/20 weeks waiting! He then said to go back for results and he will decide if I need a rheumatologist or neurologist,it’s going to be a long road which I know most people have been on,perhaps it may show a trapped nerve or wear and tear,goodness knows! Thanks for the advice on here its helpful to read other people’s journeys and know there are other people going through it ( which is sad but you know what I mean!) just hope a neck MRI is sufficient as I don’t know if that will show why my toes are going numb!

Hello again

I really don’t understand your GPs. Why send you for just a neck MRI? Why not brain too? Are they trying to save money? I imagine the cost of tests comes from their budget?

I hope the doctor gave you a prescription for some Vitamin D if you are showing low levels. It’s possible that extra Vitamin D might make you feel much better. But if not, then you are still stuck with horrible symptoms and no specialist advice and testing.

I am at a loss as to what else to suggest. Unless that is you have enough money to see a private neurologist, even just for a one off appointment during which they could at least take a history from you and do a physical examination. That doctor could then write you (and your GP) a letter detailing what tests s/he would recommend you have. You could then take this information back to your GP and ask for a) a referral to an NHS neurologist (preferably an ‘urgent’ referral), and b) whatever tests the neurologist recommends.

Best of luck.

Sue

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Thanks for the reply,no prescription as he said they are cheap to buy,which I don’t mind,you swear it was coming out of their pockets! I’m cross as I’m not one to go back and forth,didn’t feel he took me serious,don’t think he knew what to say,it was as if he couldn’t make sense of my symptoms so said neck MRI to get rid of me! does going private help with getting a MRI quicker? How much is it? Perhaps I should of sat and cried he may of been a little more sympathetic !

That’s the problem with going private. And the reason why I only suggested an initial appointment - so you’d have the benefit of a neurologists opinion and physical examination - but without the cost of the neurological tests. Which are ruinous. An MRI of the brain without contrast is likely to cost hundreds. An MRI of brain and spine with contrast will cost more. A lumbar puncture several hundred more. Other tests will cost even more money. Whereas an appointment to see a neurologist privately is likely to cost a couple of hundred pounds. But get tests done on the NHS. Definitely. Even blood tests.

What you could do is check the neurologists at your nearest hospitals - the hospital websites will have their bio details including their specialisms.

Sue

Thanks,just been on a website of a private hospital,may give them a ring tomorrow and query price on a private consultation .

Hi Whiskers,

To cut my long story short I too went ‘around the houses’ for diagnosis and ended up having only my spine done on MRI, which came back clear. The waiting time for MRI in my area is 18-26 weeks. My private scan was 48 hours after my consult-which was the same day that I rang the private hospital. I know its a lot of money but I felt it was worth it as the stress and strain was getting to me. Consultation was £200 and MRI for Head was £650, they said if they needed contrast it would be £950. This was last year. Hope this gives you and idea on costs. You can go private and still be on the waiting list for NHS Neuro and transfer over when its time for your NHS appt.

Good Luck

Lou :slight_smile:

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Thank you for the reply,wow,that’s a lot of money but worth saving for ,will look into it )