This is my first go at posting, so excuse mistakes.
I am waiting for a diagnosis. I have been on the waiting list to see the neurologist for so long that I am getting quite scared that I won’t see one at all. Every time I phone in to see when the appointment is forecast the list has extended again. It is now 22 months, which means I will be seeing the neurologist “soon” but I have heard that about 9 times and when it came around to time for me to be at the front of the list. Meanwhile I am getting worse. I am quite patient by nature, and I know it is nobody’s fault, but I wonder if anyone has any advise on medications in the meantime.
To be specific, I am wondering if there are medications that would be slowing progression that I am not having? I am having neural blockers - tegretol, and pain killers co-codamol 30/500, anti-depressants mirtazapine, and muscle relaxants amitriptolin.
22 months! That’s pretty rubbish, isn’t it? What does yor GP advise? Is there any chance of you getting the money together (£200 or thereabouts) for an initial private consultation with the neurologist that you would have been seeing at the nHS clinic, most likely? The GP would be able to do you a private referral. That can speed things along a little - you can then be plugged straight into the NHS system for any of the follow up tests that the consultant might want to do like MRIs that are beyond most individuals’ pockets. Patience is a virtue, no question, but that’s just too long a wait.
Hello Alison, it is too long, but I’m reluctant to do the private thing. First and foremost, lack of money in a fairly big way. Second, of course this could be the first time I am actually at the front of the ever extending list, and then I would have waisted the money. Third, I have moral quibbles about going private, since it is exactly what the powers that be seem to want me to do. Deprive the NHS of resources, and then blame them for being inadequate so that the system can be sold to private contractors. I am worried about my health, but I’d prefer to try to find out what I’m likely to need if possible before I start trying to sort out a loan to go private - partly because I am worried about the NHS too. Even if I could just find out what other people are being prescribed for similar conditions I would feel I had explored the other options.
Is there not waiting time targets for referrals, im sure (from memory) its around 22 weeks, so 22 months doesn’t seem quite right if you have been waiting that long?
22 months is an appalling length of time to wait to see a neurologist, I understand that you do not wish to have a private appointment. I think that you should push for more support from your GP. What if this delay leads to significant damage? You might save the NHS valuable resources in the long term if you get help to make a fuss now.
I really hope that you get access to appropriate services very soon.
In theory there is an 18 week pathway in the NHS. That is - from referral to treatment/discharge should be no more than 18 weeks. In practice it is often much longer as we all know.
You are all very encouraging, many thanks. I think the extra long waiting list is specific to my locality, Northern Ireland, and my local hospital is in a small town.
Looking through this fantastically informative and down to earth web-site, I see lots of symptoms that have worsened significantly with me over the last 6 years or so. Some have periodically happened to me nearly all my life, or have been permanent features. I thought these things were just my own rather unfortunate peculiarities, and I have joked many times with family and friends about my “stupid wiring”. It is all so very familiar that I feel foolish at having never regarded these things as an illness - “just me” has been my attitude even regarding severe pain. I suppose I have waited so long that a few more months/years even doesn’t seem to matter much. But does it??
I get the impression from what I am reading that I can indeed do permanent damage by waiting. Is that so? Should I be asking for specific drugs from my GP to prevent further deterioration? I have had a vitamin D test and my levels were very low. My treatment may bring a big improvement, but I doubt it is the whole story because the conditions that brought it about only occurred in the last few years with my becoming house bound.
If there are any other things that I should or shouldn’t be doing I think this information would be far more useful even than a diagnosis. Drugs, vitamins, exercise, diet - any advise would be great! I will keep reading and studying the information provided on the web-site, but any personal insights would be very welcome too.
The only MS treatments that have the slightest hope of slowing progression in people with RRMS are available only through hospital specialists, and there is endless debate about to how measure or even define success with that. Your GP is, however, able to give you things to help with symptoms regardless of what is causing them (as he/she is doing), but those drugs aren’t going to alter the course of MS if that’s what you’ve got.
Can’t you get your GP to refer you to your nearest city hospital with a full neurology service? Hospital transport services for people who struggle to travel might help with getting there.
You are on top of the vitamin d thing already. If you haven’t seen a physiotherapist to help with how you get about (I assume you struggle with that?) then it might be worthwhile. Beyond that, the short answer re lifestyle is that all the healthy living advice that applies generally applies to us. Finally, remember that social security benefits depend on how disabled you are, not what diagnosis you have. A chat with CAB or similar might be good - particularly if you have been struggling on without help.
Always nice to see someone new from NI on here, by the way. I was born and raised there too.
This is useful information, not great news, but at least I know the score and I can get used to that. I will speak to the doctor again about the options.
The benefits advice sounds useful too. I am a full time carer for a family member myself. He is not likely to improve either (though he has nothing progressive) but I need to get my skates on (perish the thought) as I am obviously going to need some help in these circumstances. It is clear that I have many limitations now - well beyond those normal for my age - and that I am deteriorating. Better heating in the house would be fantastic! I live on a mountain and it gets very cold. Also the transport is an issue.
Crazy Chick - I will look into that too. I have a vague memory of someone I knew doing that regarding an operation, but I don’t know how ongoing treatments/visits would work. I can’t imagine going back and forth very much, it might turn out more expensive than going private and I have a great fear of travelling these days - as well as it being very difficult for me now.
Thank you though, it is certainly worth looking into.
I wish you could afford it privately. I just went private I was there for 30 minutes with one of our better neurologists who I have been with for 10 years lol…(longer then a lot of marriage lasts ha ha), and it cost me £110.00. Worth every penny. Once you see them private they are usually very good on refer any treatment you need back to the NHS. So if you can find the money or get help maybe from family and friends its worth it. I even sold stuff i never used on ebay lol, as i am a pensioner, but it was worth every penny of it. xxxx
It does sound tempting Crazy Chick, Mogace, Alison et al. I’m thinking very seriously about it now. I will talk to my GP.
It takes at least two weeks to get an appointment with her now - but I hear some cities are worse! Derry/Londonderry is the worst I think… It took my son about 3 years to get an appointment for serious NASH liver with general auto-imune rejection and repeated glandular fever - the last two of which have not yet really been addressed. It leaves you fearing for your kids! Family got money together for him to go private, but the silly lad declined the offer - awkward like his mother-. Perhaps, if I do it he will consider it too…??
I’ll talk to my GP on the phone about it - that is quicker. Thanks for the down to earth advice, I really appreciate getting outside perspectives.