not sure what to do next?

tj66

Good evening everyone - it's a bit damp down South!

Not quite sure where to start and my story has started to bore me as I've told it to so many! Been going to GP for best part of three years with back/neck pain. Two years ago I was admitted to hospital after many visits to GP complaining of lower back pain-I mentioned that I had lost the sensation in my bladder and was rushed for MRI as it was a suspected Cauda Equina (sorry doubt I've spelled it right). Had mri and diagnosed Degenerative Disc Disease through out lumber and cervical spine. It had been such a hectic day-expecting to be sent home by my GP with more painkillers like so many times before to being told I'd need an emergency opp and being in a hospital miles away from friends and family-when they told me there was no spinal cord compression, I did something that I later regretted. I begged my husband to take me home and asked to be discharged - I'd been pulled about and intimately examined by four doctors during the course of the day.

I continue to suffer with lower back and neck pain and 10 months ago my left hand started going numb and waking me up several times a night -this led to nerve conduction studies and a further MRI where I was given the diagnosis of OA through out the spine. No nerve compression could be seen on MRI so was discharged from surgeon. But my problem continues and now it has started to effect both hands each night.


There is no evidence of cord compression so my GP seems happy - and I've been told I'll have to get used to it - I fear that one day I just won't get the feeling back-I have even wondered if I'm imagining it.

Sorry this is so long-any advise would be greatfully recieved.

Thank you

Tracey

barbara12

Hi Tracy
I do understand you discharging yourself from hospital, its awful when you have to be examined like that.
Has for your spine I have just had my results of my MRI on my back, my weakness come in my leg, and sometime I get pins and needles in my hands, to be honest I have only just put two and two together.
We have all gone through this am I imagining it, is it all in my mind, but more often then not it isnt.
So you make a list of things that are happening, and go back to your GP and get across how worried you are, I know its not easy, but we will all be behind you.
Good Luck, and let us know how it goes.

traluvie

Hi Tracey..

I doubt you are imagining it at all, you just get that idea in your head sometimes when things are continuous but no-one else seems to think it's a problem..I am sure quite a few people have felt like that..What you are feeling is very real..maybe it could be caused by another condition which may not necessarily show up on mri..I have suffered pins and needles on and off for just over a month now, my GP said it related to my tablets..
If you feel let down by your GP then i would recommend seeing someone else, explaining that you feel let down by your previous doctor and you was not happy with the way he was dealing with things and ask him if he could investigate your symptoms as it is really getting you down..I know it sounds easier said than done, but it is only us that can explain how we feel and know when something isn't right, it is therefore our job to try and put this across to the so called proffesionals, which can be a tough battle at times..Do you have someone to go with you for support???

tj66

Thank you for your replies - I'm sorry to not mention you by name - I'm hoping that will come with practise!

I do have someone to come with me to appointments and you're all right - I'll make an appointment in the morning - I have also been getting burning in my hips and shoulders, which ever side I've slept on so I'm wondering if OA is creeping through the rest of my joints.

I really am so greatful for your kind and thoughtful responses.

Tracey
xx

traluvie

I have arthur problems for 10 months now..

I am amazed at how fast it can spread around my body..Gone from my finger to many other joints.. seems the wretched beast likes to make us suffer..

We just need to ensure we don't let arthur win the battle ..

skezier

Hi Tracy,

Its good your cord isn't compromised but the gp 'might' like to learn about peripheral nerves..... they are out side and could ell be affected. There are things that you could try to help but that gp doesn't sound like she is looking for much to help you to be honest.

I have a lot of duff discs and have had a few taken out cus they were bending the cord some. The peripherals are now being squeezed a bit with the bulging and dehydrated discs as well as all the extra bone growth the back seems to be growing and for me the nerve tablets (either gabapentin or the pregabalin) work really well and help a lot. I also have a lot of pain clinic treatments, thats been nerve blocks, steroid jabs, more nerve blocks and now in the neck botox so they really could be helping you more there I think.

sadly the pain clinics very in how good they are and how much they help but it might well be worth seeing if you could go to one? I am so lucky to have a good one but any help would be a benefit to you I think just now?

As the others say that gp isn't the right person cus though there is a degree of get used to it with this one there is also a lot more things they could be trying for you..... it should be standard but gp's are often woefully ignorant about arthritis and flower they shouldn't be!

Hope you can get some over due help. Cris x

suzygirl

Hi, I have inflammatory arthritis and degenerative disc disease. I have numbness, weakness etc and have had loads of tests and no two docs agree.

Anyway, have just got on with it and accepted it. Was referred to physio by rheumy and she put the back and neck problems together with my weakness and numbness. She was marvellous and has really helped. It may be worth you asking for a referral. She has given me exercises to do, which have aggravated the neck quite a bit to be honest. However, just to know what causes what is such a relief.

Keep on seeking answers, you know yourself it isnt right. The pain clinic option is a good one as well. When I saw the pain clinic consultant he was convinced I had spinal cord compression because of the symptoms. He said the mri don't always show everything. However, as I am reluctant to discuss surgery, I am living with mine at the moment.

With other input you may arrive at answers and treatment.

Take care

weejean

Hi Tracey

Just wanted to say hello. I dont think I can give you much advice but I just want you to know that you are not alone. I have had osteoarthritis in all my joints since childhood due to a rare bone disease I was born with. The arthritis gets worse as I get older and although I am only 38 years old I am having both my hips replaced in two weeks time. I have spent a lot of my life "just getting on with things" and wish that I had looked into pain relief at a much younger age than I did. I have had a few inconsiderate GPs who have fobbed me off but then I decided to change doctors and the GP I have now is fantastic, he is very sympathetic and will do his best to help me whenever he can. I also have two wonderful surgeons who I trust. You have the right to get a second opinion and hopefully you will find doctors who listen to you and try to help. Hope things start to improve for you.

Love Jean x

tj66

I'm getting the hang of this now - I've written all your names down on a piece of paper before I hit reply!

Thank you Barbara, Tracy, Cris, Suzygirl and Cris, for taking the time to give me the benifit of your own experiences.

I was brave enough, thanks to you guys, to call and book yet another appointment with my GP. As you say and as I have learned not everything shows up on MRI - and that is my biggest fear that there is something going on with me that they can't see. My hands got cold earlier today and all my fingers went completely numb-I know it's not gonna kill me but I also know that hands shouldn't do that-if I was on a snow covered mountain top may be but popping to the co-op!

I was so pleased (funny what makes ya happy) when I had another MRI in January and the consultant was so kind and really listened. When I went back for the results, after sitting/standing /rocking/ for 2 hours as he was running behind- it was like a different person, I was in and out in less than 2 minutes with a diagnosis of OA.

I was so deflatted as I thought this would be the end of it-don't get me wrong, I'm very glad they don't have to fuse my neck-but they keep telling me what it isn't and I want to know what it is!

Sorry-I'm getting a bit cross with myself-had a call today from occy health and after speaking with me for 10 minutes it became apparent when she asked that we should meet face to face to talk about my problems(I'd spent an hour and half with her last week) I realised she didin't know who she was talking too! And they want me to see a works doctor!

Oh that felt so nice to get that out - I didn't realise how fast and hard I could type.

Thank you xxx

tj66

Thank you to Jean too!

xx

barbara12

Hi Tracy ,it took me 6 months to think about writing names down on a piece of paper...so you are doing well..

traluvie

I never even thought of writing the names on the paper..

You doing better than me Tracey.. lol

Glad you feel better for letting it all out.. takes the weight of your shoulders..

tj66

Ha Ha! As well as being blessed with Arthritis I'm also Dyslexic too, that's one of the stratagies I use. It plays havoc with my short term memory add on the Amitriptylin and a few co-co s I'm surprised I remember to come home!

Now I've blown my cover-any one who knows me who reads my posts will know exactly who I am.

Oh well - off to Weight watchers for the bad news! And that's another thing I can't stop eating!

suzygirl

Hi, I have memory problems, and when my hands are bad, my typing is shocking!!!

Could it be possible you have raynauds disease in your hands? Do they change colour red/white/blue with the cold and get a painful tingling when the blood flows again? I have this, it oftens accompanys arthritis unfortunately.

Although my neck also causes my hands to go numb and part of my feet as well. Horrid isn't it? Glad you are going back to the gp. Do let us know how you get on, we all have to support each other.

towyview

Hi,

I have also had trouble with numbness in my hands, in particular my ring finger and little finger. I had nerve response tests done which revealed ulna nerve entrapment. I have had surgery on this last November but although I was told it would take a while to improve, to date it is just as bad. I won`t say don`t bother with surgery because I wasn`t too impressed with the surgeon, I might have been unlucky. My other arm is also beginning to feel the same, it wakes me up at night but I wonder whether I should risk another op when the first one didn`t work - or maybe I`ll look for a different surgeon.

Dorothy