Thanks again. Been a difficult few days. I have now spoken with my neuro and she is saying the lesion previously seen have now gone. she could say if if was totally gone but small enough not to be seen capture don the MRI. I asked why my symptoms are still here, having difficulty walking and very pain fully legs, spasticity in legs and bladder and so on. She said that there may be lesions they can not see and they do to know exactly how the disease works!!!
I asked why the ’O’ bands showed positive only two months ago and she was very vague and didn’t really make sense saying about inflammation.
She said we would have to waiting and monitor over next few years, but if I had any significant symptom changes or a relapse she would diagnose, even without MRI lesions. I asked if I would get better and would I get over the TM. She didn’t know. I am now waiting for GP to call where I will be asking for a referral to a specialist MS consultant. I have been looking at private, but is it the case of having to except and get on with it. ??
Sorry rant day and my legs are burning over the last 48 hours due to the stress.
On a positive note the suns out and it nearly the weekend.
Pam, thank you and really appreciated. This week gets no better but will not let it beat me. Just got off the phone from my GP. He will not refer me to another neuro as he feels I should speak with my neuro to ask to be referred to the MS specialist neuro who works for the same within the same NHS authority. Basically there is only one MS specialist neuro in my NHS authority and he feels it would be better for me to request referral to him via my neuro saves professional embarrassment apparently . I will but next appointment not until October. So unless I get new symptoms or relapse it will be a wait and watch when physically it’s very obvious and clinically I need to tick another box. How bad does it need to get before it see help. Well as I said despite the difficulties and pain I will keep going looking for way to treat the symptom and ways to cope with the mobility change. Any suggestions with the pain. Mainly sensory pain in my legs which are burning all the time? Thanks you for all your posts which are appreciated.
I take amitriptline for nerve pain (it is also an anti depressant) but it has been shown to help with neuropathic pain. There is also gabapentin and pregablin.
Your gp should be able to prescribe one of them to see if it helps, without waiting for your neuro appointment.
You need to start on a low dose and build up gradually. I also take baclofen for spasms and spasticity.
Hi Jason, If your GP won’t refer you maybe you could consider telephoning or writing to your consultants secretary and simply asking. I’m not sure of the ethics involved but I thought GPs were paid to help their patients not save themselves from a little professional embarrassment. Its a horrible situation for you to be in and October must seem an awful long way off. I know it can be awfully hard to do but it sounds as though the only way to get some action is to keep pushing you GP or go over their head and ask for an appointment with the senior partner at your practice. Wishing you all the best, Nina x
Getting a second opinion You can ask your GP or another healthcare professional for a second or further opinion (an opinion about your health condition from a different doctor). Although you do not have a legal right to a second opinion, a healthcare professional will rarely refuse to refer you for one. For more information please see NHS Choices - How do I get a second opinion?. Jason, just found this on google, hope it might be of help. Nina x
Jason, Nina’s idea of phoning the neuro’s secretary is a good one. Make a brief statement of your position and politely request that if any cancellations come up, you’d really appreciate the chance to be seen. It’s an ok thing to do and something I have done myself on several occasions. The last time I did it I was actually on a ward in hospital, and fed up with not being seen. Good job I did. For some reason they thought I’d been discharged! Kev
Jason for pain control you need to see your gp, there are drugs available and they should keep you comfortable. I’d make sure that you make notes on your symptoms and if ANY get worse or others appear you demand to see the Neuro urgently as this could be classed as a relapse.
Thank you all for your advice. it’s been a real help. I will be writing to my neuro to request referral to the MS specialist who is above her I presume. I have been going through the medication of gabapentine and currently taking pregabalin plus tegretol plus baclofen. The whole situation has flared up my symptom this week with increase tightness and burning red legs. Hopefully they will settle down before Monday. Again thanks for your advice which has given me school for thought and motivation to keep pushing for a dx. Have a good weekend all and best wishes to you all. Jason.
Thank you all for your advice. it’s been a real help. I will be writing to my neuro to request referral to the MS specialist who is above her I presume. I have been going through the medication of gabapentine and currently taking pregabalin plus tegretol plus baclofen. The whole situation has flared up my symptom this week with increase tightness and burning red legs. Hopefully they will settle down before Monday. Again thanks for your advice which has given me school for thought and motivation to keep pushing for a dx. Have a good weekend all and best wishes to you all. Jason.
Hi all, it’s been sometime since I last wrote but just wanted to let you know I have just had my 4 monthly neuro visit and was armed with my ongoing symptoms and views. Having discussed with her and expressed how the daily difficulties were effecting me she out of the blue said she would refer me to the MS specialist team in southampton and said hopefully they will be able to give me a diagnoses of progressive MS.
Jason I know many people wouldn’t see that as good news but as someone who’s been in your situation I’m very pleased for you. I hope you can get the answers you need and please let us know how you get on. Did you eventually get your pain under control? Take care
still battling with the pain and taking a cocktail of meds which do help but everyday is different. I have had quite a few UTI which do get me down and can’t work out why I am repeatedly getting them. When I do and have another one today it knocks me down quite hard with increased symptoms, but antibiotics do work quite quickly.
Soz been bad day and bit fed up but tomorrow’s another day and hopefully will be better.
just a a quick note . I have now seen the MS specialist from southampton which was really helpful. Having now been examined he found there was something on my eyes and re-looking at my scan he found a lesion on the brain which caused the eye movement issue. He has given me the diagnoses of PPMS. I know it not good news but was just waiting for the confirmation so no real surprise. At least now I can get some support through a MS nurse he has linked me up.
Again thanks for the support and advice and may have a few question if ok .
Jason you’re right saying it isn’t the best news in the world and you’ll probably have a few days where you find that the reality of it is very hard to take, I know I did and still do at times. I still hope some days that they got it wrong as it seems so final and a permanent and very nasty stamp on my medical records if that makes any sense. But it’s a huge relief to know that you have a dx and reason as to why your body is broken and it’s not all in your head.
Try to think of the cocktail of meds as just another aid to give you a good quality of life. I take loads too and as an ex nurse I found it awful. I was taking more meds than most of my very aged patients but life without them was very uncomfortable. I hope you now get all the help you need, make sure they refer you to the occupational therapists, they’re extremely helpful with so many gadgets and tips to make life easier.
The forum is also invaluable as there are so many people who’ve had the illness for many years and have hands on experience coping with symptoms that no expert can manage from what they’ve learnt in seminars or in text books. Take care and thanks for letting us know how you got on.