Superstar,

I don't know how generous (or not) the UK health care system is with physical therapy, but my physical therapist helped a lot with my similar issues with balance and gait. Medication has also helped (Nortriptyline and Gabapentin). So far my neurologist has ruled out everything but that good old non-diagnosis, "idiopathic PN." Of course, my symptoms might get worse at any point, and your spinal problem might lead to very different treatments, so my case may not relate well to yours.

Thanks for that info ChaucerFan. Physio is available, in fact I have just finished it for my frozen shoulder, still not right but a lot better and I continue doing the exercises at home. The waiting list is over 3 months but it is something to bear in mind if needs be. I almost wish it was a vitamin deficiency because that would be fairly easily treated but the ones I had tested were fine, a bit high if anything (B12, folate ). My vitamin D about a year ago was high also because I had been taking D3 but stopped back then and just started taking one a week now as am sure levels will have dropped down again.

Hi,

I'm also in the UK (London). My GP wrote a letter of referral to one of the hospitals here for a neuro appointment 4 weeks ago. He told me not to phone to book for at least a week after that which I did. My app was for 16 Dec. I went back to the surgery, saw a different doctor who showed me all the hospitals available on his computer and approx waiting times. He chose a different hospital, told me to go home and book online. I now have an app on 6 Nov. My doctor didn't even know patients could do this!

Anyway, good luck with your appointment. Keep posting. I wrote my first one here today and Mrs D replied really quickly which was great!

Karen

Hi Karen,

Isn't Mrs. D wonderful, so knowledgeable and helpful to everyone. I am very new too and still learning. I am in Lancashire and had to wait about 9 weeks for my first neuro appointment which is in a hospital about an hour away but was the first available appointment. I think the time frame is not too bad for NHS when you hear the horror stories.

The neuro told me to go to ER if I got worse and I think I am going to do that today as it was only 10 days since seeing him and the really bad numbness has spread further to mid thigh on left side and one of the tests he had me do in his office was squatting down on the floor and getting up which I could just about do with great difficulty. Yesterday I found I could not do it all as there is no strength in my legs so am worried if I wait another 2 weeks for the MRI for the spine that things could get significantly worse.

I am not sure if I hope they find anything as he said if it is a compression or impingement and they have to operate it will only stop things getting worse and will not improve matters. If they don't find anything then I am none the wiser and probably will get worse but as I don't have any significant back pain I am not sure this is the cause but he said it is the first thing to rule out.

Will update later if/when I have any more news and good luck Karen, there are lots of very kind people here with a wealth of knowledge. I would think you have some top class hospitals in London too.

Hi again,

I've posted a few times today if you want to check out the latest in my catalogue of woes...

You sound incredibly brave and centred about your symptoms. I'm climbing the walls worrying more about the future than the present (the intermittant pain I have right now is bearable but annoying). If it stayed like this I could cope. It's the fear of progression (and the underlying cause of course) that really grips me.
If I'm off work now (I'm a primary teacher), what will I be like with a diagnosis?
My friends were supportive in the beginning, but as I have a history of health related anxiety, they are convinced a lot of the symptoms are stress related.
It would be great if they were!!

Karen
PS Whereabouts in Lancashire BTW?

Hi Karen,

I am in Chorley, 45 minutes from Manchester and I understand what you mean about the prognosis.

I went to A & E on Monday as I felt symptoms had spread more up legs etc. and my neuro told me if I did that they would refer me to where he is but they didn't. They admitted me there on Monday, which is why I have not been on these boards and did MRI which shows a mass at T3 on spine about the size of a pea but that is quite big for the area in the spinal column where it is. They said they would send me today to the spinal unit in Liverpool and I was waiting for an ambulance when they said they could not admit me there as no beds but I have an outpatient appointment there tomorrow with a neurosurgeon.

They have put me on steroids which apparently may shrink it or slow it down and in a weird way I am pleased because this mass is in the bra strap area of the spine which is where my numbness starts and works its way down to feet so it makes sense that this is the problem. They say (depending on which dr. you talk to) that is is impossible to tell from MRI if it is malignant/that it is benign/it is almost certainly benign, so 3 doctors 3 different answers and they are all just general doctors so really need to see what neurosurgeon says tomorrow. They also said (can't remember which dr. now) that if operated it will reverse symptoms that I have because it is not compressing spinal cord but just displacing it. If it was compressing I was told that it would just stop progression and not improve what I have now so if that is the case `i will be happy.

I have a feeling they may just tell me to keep taking the tablets to try and stop it getting bigger until they have space for me but will know more tomorrow.

If you can get a diagnoses with the problem at least you can try and put it right whereas if I had been told MRI was OK I would have been back to square one so I am pleased (I know that sounds odd).

Late last night I had a lightbulb moment as I remembered that I have always had an itch at the bra strap area, maybe 5 or 6 years and GP said it is dry skin and not to worry but just hoping the two are not connected so I will mention that to him tomorrow.

Sorry this is all so longwinded by the way LOL

Hopefully you will get some answers soon.

Hi,

I thought you must have been admitted as you hadn't posted for a while.
Potentially very good news for you, I am so pleased. The whole experience must be so frightening. I sent you a good luck private message on Monday, don't know if you got it, (you should see a notification message in top right hand corner under welcome sign).

I don't know what I'd do without this forum at the moment. It's what's keeping me going.
I've got to just wait now til Nov 6. Seems a lifetime away!!

Good luck and keep us posted.

Karen x
PS I had a friend at uni from Chorley. I used to visit Manchester a fair bit when I had friends there (Longsight mainly)..

Hi Karen,

It is a godsend to just know there are other people in the same boat as you isn't it? Just to read other people's symptoms that you can identify with and what works/doesn't work for them is uplifting and gives you hope.

Nov. 6th is less than a month away, I had to wait 9 weeks and some people a lot longer, it will soon pass. Are you taking anything for the anxiety/depression? If the Dr. has not prescribed anything, how about some natural OTC pills. I have heard that St. Johns Wort, SAM E etc. can be helpful but I am sure there is a thread here somewhere with some good information in it. Mrs. D is great with all her knowledge about supplements.

Take care,

Heather