Since I was told that I had ppms I have only seen my doctor( hospital) once since and I feel I have just been left to get on with it. My balance as got worse and I have had a increase in my tremors to the point that any long walks are out and have had to get a mobility scooter instead of a wheelchair has got to much for the mrs to push over long periods. My problems seem to be only when standing except for the tiredness in the afternoons . I know will not drive in the afternoons unless I have my nap Is this normal I donāt know Steve Maslen,
Hi Steve, I too have PPMS. I see my consultant every twelve months. June/July. Last year he couldnāt offer me anything other than Physio and my name added to Fampyra list. I see my MS nurse between the appointments. Saw her in December to tell me I could trial Fampyra. So I went back to see the consultant for prescription and a walking test then back in January to have another walking test. Which proved to work. He then said Iāll see you as normal in July! Then over the winter Iāll see MS nurse, but she is available if I need her as and when! You sound like I was before Fampyra! I think its all down to the hospital your under? Maybe have a word with your GP Take care Chris 
Hi Steve, I have only seen the MS specialist once too. He basically told that there was nothing that he could do for me once he dxād me in Dec 2011 but said he would see me if I requested to be referred via my GP. As I have continued to progress since then and feel abandoned I have asked my GP to refer me back to him,so Iām now waiting for an appointment which will probably take months! My walking is quite bad now and I canāt last very long on my pins with two sticks. Anyway, I know how you feel about being left to get on with it. Teresa xx
Same here. I see my MS Nurse twice a yearā¦ all he says is: Hi Dave, and then the sympatheticā¦ How are you. So i answer him with medication questions & questions about my balance etcā¦ all he says is: Try taking a multivitamin !!! No Mr MS Nurseā¦ i want answers to my medication questions seen as you will not prescribe me anything 
Welcome to our real world, I should see my Consultant every 12 months (not much point) but it seems to move every year so much so, looking back it was January 2008 itās now Sept so 8 months have been lost, does that make sense? They canāt do anything any way, take care, be safe and hey! what doesnāt kill us makes us stronger. M
Hi everyone, I just wanted to say - you should be seeing a good neurologist at least once a year. There are drugs out there to help everyone with MS and your neuro should know about the drugs, be keeping track of where you are and offering you what you need.
I used to have a completely cr*p doctor as my neurologist. I saw him once, saw his registrar a year later and never got another appointment. My husband was completely horrified by this. As he put it, āthey could find a cure and you wouldnāt even know, because you donāt see a neurologistā. He then talked to the doctors who run the neurology department at Edinburgh Hospital (the one that was endowed with millions by J.K. Rowling because her mother had MS) and they recommended a neurologist in London who specialises in MS. My GP said I was entitled to a second opinion on my disease and now I see this, absolutely excellent, neurologist about every seven or eight months. When I saw him in October, struggling, he suggested Modafinil and prescribed Fampyra for me. He is a completely different species from my previous neuro.
If anyone lives near London and wants my neuroās name, they can PM me. But even if you donāt want to go to London every eight months, there are plenty of good neuros out there. You just need to find them. If you get ādiagnose, adiosā then youāve met a useless neuro and you need to find another one.
Thanks for that Sewingchick, maybe we need to speak out on the rare Consultant appointment. I think itās a shame Neurologist donāt read this forum. M
Hi, I see mine once a year.
I know some PPMSers donāt see neuro, but personally I would insist. There just might be a new drug that could help, and also they are useful for help with symptoms and referrals. I got referral to bowel nurse through neuro and am currently waiting for referral to bladder nurse.
Also, if you are claiming benefits or are going to claim for critical illness their letters can really help support your claim.
Pat x
Hi, Have just had a letter through to see the neurologist on September 11th - but it is a different guy, donāt know why! He canāt be any worse than the other guy I saw who was worse than useless really! Hopefully I will feel a bit less abandoned after Iāve seen him but Iām not counting my chickens! Teresa xx
Thanks every one for your replys at least I donāt feel alone any more beginning to think it was just me Will see what I can do now.
so many questions so few answers, they say its a 20 yr prosess from dx to wheel chair, use they dont say how much u have to deal with along the way, i do feel like iv bin left to get on with it. iv bin of work simce 2nd dec with relapes and bad reaction to injections,now iv stopped them and unprotected. god nos when the next 1 will hit, feel unsafe even to leave the house JUST IN CASE. rant over.
I was told by a now retired specialist āthis is as good as it getsā and he was right that was near on 20 years ago.n I manage without bothering the experts, my MS nurse sees me when I call her, my GP is fantastic and most of my bproblems are solved by him or the MS nurse. Untill the find a cure for PPMS I will give the consultant a wide berth
Hi Steve, my first, and last, meeting with the consultant went, Him, we are 99.9% sure you have MS, have you any questions, Me, nothing at the moment, Him, there is nothing can be done for progressive MS, all I can say is, live your life as best as possible. And that is what I have done to the best of our (wife and me) ability, that was back in 97 and I first met MS nurse about 03, saw her two or three times. To my mind, why waste their, and my, time when nothing can be done, I know when I needed clutches, then wheelchair, to move house, install wetfloor area, fit a sloping entry to house, use scooter, whatever is required, I know when, to suit me and my wife, we say, we pay, given no help, nor anything paid for, Brian
Iāve had four neurologists ā¦first one did no tests said my problem was not MS and offered no help as to what was causing my symptoms. Second gave me MRIās LP and various other tests, diagnosed MS and told me to go away and take melatoninā¦he was German. Third was extremely rudeā¦I chose not to go back. The fourth, and I hope the final one is WONDERFUL. I can only advise that you look into changing, if itās at all possible. I moved house and area so it was relatively easy for me. Best wishes, Nina
My Neuro specialises in ms and is the main one in Cumbria. I got referred post dx and it was the best referral ever. Heās lovely and patient, never makes you feel daft asking questions, encourages me to bring lists so I never feel abandoned and introduced me to my ms nurse on my first visit and she attends all my appointments. I saw him 3 months after my first visit and now annually but if I have a problem I contact my nurse and if necessary I can see my Neuro the following Tuesday after my phone call, he keeps time open on his schedule to allow for emergencies. Itās very reassuring and getting hold of my nurse has never been a problem so I never feel abandoned. They even contact me if thereās research being done and appropriate to me asking if Iād like to take part and come to my house to get the info. A real improvement from the Neuro who diagnosed me. I wish everyone could have the same support xx
Saw neurologist yesterday. He said I have ME not MS because my reflexes were fine. Looked up symptoms of both but didnāt relate to ME other than the fatigue.
I have itchy/, numb/ burning hands and feet.
Tingling/pins and needles going up arms and legs.
Poor balance and fatigue. just like some reassurance from someone who knows more about it. Do reflexes go with MS?
I see mine once a year. However, going to see my GP Dr Bod! revealed we have a local MS network of healthcare professionals who started to come to see me at home. Ask!
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I see mine once a year. However, going to see my GP Dr Bod! revealed we have a local MS network of healthcare professionals who started to come to see me at home. Ask!
I ws dx 6 years ago and my consultant gave me an appointment for 6 months time. When I went back he did offer me a yearly consultation but I got the impression from him that there was not much point as there was nothing they could do, so I declined. He said live your life the best you can but he did say I could phone the ms nurse anytime. I didnāt feel like I needed her until about 2 years later and as soon as I phoned her I got an appointment straight away. I have been going yearly ever since. I donāt feel abandoned, I feel they are there when I need them but just because I donāt push it, I would hate to think there is treatments out there which I am not being offered. Mags xx
Hi, It has been great reading about the different experiences. I donāt live in the UK, at present, and was diagnosed a year ago and was told it was almost certainly PPMS. I have seen the neurologist once since then but only a brief visit and like many of you more or less told there is nothing they can do except when things get difficult. I saw a MS nurse but didnāt get anything from that. I have found reading your posts really useful as I was struggling to know whether there is anything else I should be doing.