I have decided that I need to seek help from people who understand! Unlike my mum who asks every day she hopes I am feeling better, and every day I say no! So I will keep this brief as I am waiting for a firm MS diagnosis, but I have a lot of the symptoms mainly numbness and pins and needles, and my MRI and lumbar puncture are positive. My most recent letter from the neurologist says about central nervous inflammatory demyelination/ clinically isolated syndrome and lots of other big words!
I guess my questions are can I have something to get rid of the pins and needles, and how do I get a private consultation to move things along? I run a small business with my husband and I so want a diagnosis so that I can move on and be more efficient! Even typing this is difficult in my brain fog!
Also, links with glandular fever? I have done a little research and know there is a possible link with the virus that causes glandular fever and MS, I had glandular fever at about the age of 11 or 12.
Look forward to hearing from people and contributing.
HI, I’m waiting for the mri x To get a private consultation, you choose who you want to see, then get your gp to write to them. The consultants receptionist will contact you for an appointment. But you will have to pay, which is anything from £150 upwards. Like you I’m suffering with pins and needles and numbness, brain fog, but it’s my distinct lack of balance that’s really bad at the moment. Sorry can’t be of any more use x Ann-Marie x
might be worth asking the GP if something like Gabapentin, or Pregablin, would help with the pins and needles. They alter the signal from the nerve, meaning you doesn’t recognise the sensation as much. Ive used Gabapentin for a number of years and it works very effectively, mine is to help treat the nerve damage in my lower back and legs.
I’m also CIS / probably MS as a result of a bout of pins and needles in my feet/groin in late February. My initial appointments were with a private general neuro booked through my healthcare insurance (after a referral from a Dr in A&E as I had an initial emergency MRI of my lower spine to rule out something called cauda equina and which showed lesions). The general neuro ordered a further full MRI and, when that showed multiple lesions, referred me on to an MS specialist neuro. The generalist neuro also gave me a 5 day dose of steroid tablets (medrol) which quickly and completely got rid of the pins and needles (so much so that I’ve just returned from trekking the coastal paths of Northern Ireland with my boyfriend - over 45 miles in 3 days carrying a pack and with a bonus hill climb at the end!).
I saw the MS specialist neuro privately - and he confirmed the CIS diagnosis and very high likelihood of full MS given my scan. He also said he was willing to take me onto his NHS books so that I could be treated from there as most private healthcare cover doesn’t extend to the treatment of chronic conditions like MS (I checked - mine doesn’t). In order to move me from his private practice to his NHS one he wrote my GP a report and asked her to refer me back to him at his NHS practice. Due to the waiting list, my first NHS appointment isn’t until July (!). However, the continued CIS diagnosis gives me the luxury of a private follow up appointment next week to start discussing treatment options ahead of the NHS appointment and a further MRI in June.
I understand that it is only after my first NHS appointment that I get formally referred to an MS nurse - although the neuro did introduce me to the two he works with by copying the report to my GP to them and they’ve confirmed I can call them if I have any questions/am worried about anything.
So there is a bit of complexity to work through about the interplay between private appointments and NHS appointments when you are trying to move things along quickly - even when you are seeing the same neuro - unless you are able to pay for the full on-going costs of treatment directly/through insurance.
Like you, I’m keen to keep things moving as quickly as possible (I’m a corporate lawyer and like to manage a process and timetable!) as I feel like a sitting duck at the moment and am keen to crack on with a induction style treatment to do what I can to keep mind and body intact for as long as possible and get on with my life.
I’ve read some stuff re. epstein-barr/glandulour fever being a trigger in people who are genetically predisposed to get MS. To my knowledge ive not had glandular fever so haven’t read too much on it.
Hope that is vaguely helpful - and you get some respite from the pins and needles and other symptoms soon!
The pins and needles sensation is called neuropathic pain and is bloody annoying. It’s not real pain, but nerve signals being “jammed” or “short circuited” and telling your brain that you feel you have fallen into a nettle patch or have been asleep on an arm.
Yes, there are several drugs to treat this. Tell your GP what it feels like to you and he/she will be able to prescribe one. If the first one doesn’t work then there are alternatives. I changed three times and came up with a cocktail of drugs before I got the result I wanted.
I was given pregabalin for the pins and needles, after a month of no difference on 10mg daily, it was raisedto 20pmg daily. You know the side effects of pregabalin? Pins and needles and numbness. … yes I went worse, to the point I couldn’t handle it anymore it was so darn painful. Got put on amytriptaline, which I didn’t want as it did nothing for my shoulder pain and numbness. But still got it bloomin prescribed. Now up to 50me a night, still having no effect on the pins and needles.