Hi everyone, I’m new here and wanted to introduce myself. I actually wrote a lot about my current situation in this thread - http://www.mssociety.org.uk/forum/viewtopic.php?f=45&t=1415 - so I won’t repeat myself! Only to say, briefly, that I was diagnosed with a Clinically Isolated Syndrome at the end of 2009 and despite ongoing symptoms have been waiting for a confirmed diagnosis ever since. I’m finding things pretty tough going at the moment, and hope to find some support here. Thanks for having me!
Welcome to the site everyone here is very supportive and friendly. I personally would have been lost without the support I have received on here. So again - Welcome.
Hi Mandy, and welcome to the site
I’ve just had a read through your other post. Your burning and redness sounds like erythromelalgia. I get it too - in my hands primarily, but also in my feet. I’ve had it in my face and neck once. It sometimes spreads a bit into my lower arms and lower legs. I go lobster red and my skin burns so much other people can feel it from a distance! Weird! (Keeping the relevant bit elevated can help btw.)
I hope your appointment at Queen Square gets moved up. It might be worthwhile letting them know that you also seem to have erythromelalgia - best to get a proper diagnosis first though - my word definitely doesn’t count! It might make them more interested, and maybe get you an earlier appointment.
Hi Jan, and thanks for the warm welcome.
Hi Karen - wow, I have just googled erythromelalgia and found pictures that look exactly like me! That’s so useful, thank you. it’s actually because of that that I have been referred to Queen’s Square, but no-one has ever given it a name before. I found this interesting discussion about it, and the possible links with MS.
Well, I am really going to wow those doctors at Queens Square, eh?!
My neuro thinks that my MS has damaged my autonomic system, and that’s what’s causing the erythromelalgia (as well as some other stuff). It’s worth googling “autonomic system” - there might be more going on in yours?
I think my neurologist is not sure whether I have autonomic problems caused by MS, or whether my autonomic problems could explain everything else. Hmmm.
The docs at Queens Square said autonomic dysfunction would not explain my LP result, so I think it’s pretty clear! But yes, we have to wait and see, and that is the hard part. It really is getting to me.
I’m feeling so low. I can’t handle all the waiting. I feel as though I have been waiting and waiting and waiting for nearly two years now, and the lifeline I was holding on to (tests at the Royal Hospital for Neurology) that I was expecting from early September might now be up to six months. I honestly feel as if I have reached the end of my ability to cope. I feel awful every day. My pain is getting worse all the time. I cannot sleep. Because I do not have a definitive diagnosis, only ‘probable’ MS, I cannot access local support networks. I know there is evidence that DMDs are recommended for people who have had a clinically isolated syndrome, because if it is MS they can delay the progression of the disease, make it less likely I will have another relapse and perhaps make that relapse less severe. I feel that every day that goes by is a day wasted. It’s not as if I am worrying about one incident that happened and nothing else - my life is being affected, especially by the fatigue. I spend my days day-dreaming about ways I could hurt myself enough just to be in hospital for a while and not have to cope with anything else. I told my doctor I’m not coping,t hat I don’t know how to keep going on, and that some days I don’t even know if I want to and he just shrugged and said I have a lot to deal with. I just feel that I have exhausted all my energy, both physical and psychological. Normally when one is low I can use the other to pull me through, but they are both running on empty. I’m living on my adrenalin, scraping through each day. From my experience of living with a chronic illness (CFS, which was possibly MS all along!) for six years, I know a big relapse is coming. I can feel it and I don’t know how to stop it. I feel like no-one is listening, no-one believes me.
Your doctor’s response is completely unacceptable. Please please please book yourself another appointment, but with someone else if possible.
You do NOT need a diagnosis to access help. GPs can prescribe meds for your pain and fatigue and anything else you are struggling with. They can refer you for counselling (which I thoroughly recommend - it’s helped me and many others I know) and to physio and OT and to pain clinic and to anything else that might be able to help you. YOU DO NOT NEED A CONFIRMED DIAGNOSIS OF MS TO GET THESE THINGS.
Be strong. Ask for help again. If your GP won’t do anything, then make a formal complaint to the practice manager and, if necessary, contact PALS (patient advice and liaison service).
My surgery does not really let you see any doctor other than the one you are registered with, unless it is an emergency appointment. To the point that I needed a breast exam and requested a female doctor and they refused! I asked to speak to the practice manager about changing the doctor I am registered with and she refused to take my call and passed a message on via the receptionist. The message? “Put your reasons in writing and the partners will consider them at their next meeting.” Can they do that?
My surgery does not really let you see any doctor other than the one you are registered with, unless it is an emergency appointment. To the point that I needed a breast exam and requested a female doctor and they refused! I asked to speak to the practice manager about changing the doctor I am registered with and she refused to take my call and passed a message on via the receptionist. The message? "Put your reasons in writing and the partners will consider them at their next meeting." Can they do that?
To be honest, I don’t know, but I wouldn’t be surprised. This is different though - this is urgent.
Insisting that you see the same doctor every time may arguably have some benefits (he gets to know you better), but it also means that you have to wait longer to see him and, if you don’t get on (or he’s just not very good), you get sub-standard care.
More importantly, right now, you need to see someone who will actually help you. Your mood at the moment IS an emergency: thoughts of self-harm are something that any doctor should take very very seriously. So please phone and ask for an emergency appointment with a different doctor. If they ask why, and you don’t want to tell them, tell them it’s private and you can only tell a doctor. If they refuse you a appointment, ask them for the reason in writing - so you can include it in your complaint to the Patient Advice and Liaison Service (PALS).
Hopefully it will be OK and another GP will help you, but if you don’t have any joy is there another surgery in town you can switch to? Please do that complaint too, if the current surgery won’t help - they shouldn’t get away with it. If everything goes OK and you see a good GP at your current surgery, ask to switch GPs. If you do have MS, then you are going to need a good relationship with your GP. You might not have to see him/her very often, but you need to see someone who will HELP!
Thanks for all your support and advice, Karen.
I have an appointment this afternoon with another doctor. Again, the receptionists were very obstructive and said I could see the new junior (very newly qualified) doctor. I said my problem was quite serious and wanted to talk to someone experienced and they said she is fully qualified. I have gone with herb ecause I know she is being overseen by the doctor I would really like to see, and I am fairly sure that she will not deal with me on her own. I hope to take this opportunity to talk abour how dissatisfied I am with my current doctor, and to see if there is anything more they can do to help pin down a date for my tests at the Royal Hospital for Neurology. I don’t think that is too much to ask. And, of course, I want to know how I can stop these disturbing and distressing thoughts. Although to be honest, they aren’t distressing me any more - i just feel numb to them.
Thank you again,
If I’m not too late, please make sure and ask for meds for your symptoms. Getting them under control could make the world of difference.
I agree, please try and make yourself heard, your mental health is as important, if not more so, than your physical, you need your head to carry on through all of this. Please don’t harm yourself, beleive me, you have a right to be heard. Very best of luck xxx
Hi mandy, welcome to the site. You`ll find support, advice and even the odd funny joke here.
Hope you get your dx soon. Still waiting for a deffo one for myself, after 13 yrs!