I know this may sound strange but I was diagnosed with ms 9 yrs ago, after diagnosis I moved to a new part of the country (8yrs ago) I haven’t seen a consultant since diagnosis and now don’t have one because I am too scared to see one . I can’t face the thought of another MRI and all the horrible results and the way that makes me feel I’m sorry I know I’m not very brave , My gp knows how I feel and doesn’t push me. I was told I had primary progressive ms and there was no cure and no treatment so I suppose I feel that seeing a consultant is just like documenting my decline Is there anyone else out there who doesn’t have a consultant and if so why ? Thanks
I obviously had a consultant at diagnosis 8 years ago. I’m also primary progressive. I consulted the ‘top consultant’ privately about 6 years ago. Waste of time (and money!).
Won’t be seeing a consultant unless there is a new therapy available.
Another MRI won’t tell you anything. Nunber of lesions doesn’t determine disability / progression.
I just concentrate on keeping as ‘normally’ well as possible.
It’s easy to get depressed with ms. Can’t think how a consultant can help!
John H.
Hi, I’m also PPMS. To be honest, I see consultant once a year as it’s useful to have letters to show for benefits. How cynical is that?
If I could live without benefits I don’t think I’d bother… not until they come up with a treatment.
I was recently offered yet another MRI and I refused. What’s the point? I get a taxi to the hospital. I go inside the machine for an hour. I go home. A month later I get a taxi back to the hospital. The neuro tells me there are more lesions that they can do absolutely nothing about. I go home. Completely pointless exercise.
If you are doing ok without a consultant then carry on regardless. Hope we see you on the PPMS board sometime (we’re a small group but perfectly formed).
Take care,
Pat x
Hi, I agree withh JohnH. You have a diagnoses so unless you think you need a consultant, I wouldn’t worry about it. I was diagnosed 4 yrs ago with RRMS. I’ve probably seen my consultant no more than once a year and every time I’ve felt like it’s me that has done all the research, he hasn’t told me anything I didn’t already know(I go private so it’s a waste of my money). Only you know how your feeling, if I need anything, I just phone the MS nurse. Andy
If you are getting on OK, and don’t feel the need to see a consultant, then why bother?
It’s not as if you’re not in touch with any health professionals at all. If your situation changed dramatically, and your GP felt further intervention was necessary, then surely, they’d discuss that with you?
I have RRMS, but am not undergoing any treatment apart from symptom relief. I am questioning whether to see my consultant any more, because I get so worked-up about the appointments, I think it’s counter-productive for my health.
My consultant is nice, by the way. I just hate going, and I hate having the physical examination, which, by definition means trying to do stuff I can’t do properly.
Last week, I got in such a state I was trembling, and he wrote this down as being a symptom of my MS - which it is not!
I don’t think I’ve gained anything from attending the appointment, and it caused me a lot of anxiety I could do without.
I’m thinking of giving them a miss in future, unless there’s something in particular I need help with.
If it’s just to come home and soldier on as before, I can’t really see the point.
Tina
Hi Anon
I was diagnosed with SPMS 6 years ago and the consultant discharged me as there was nothing he could do. At the time I found that difficult to deal with but as time has passed I’ve come to realise that he was right.
My MS nurse and GP are brilliant and I see a physio who really helps, so what do I need a consultant for? As time goes by maybe that situation will change.
If your needs are being currently met by other health care professionals then seeing a consultant is no big deal.
I hope you continue to make the decisions that are the right ones for you.
Hi Anon,
If you are having trouble then see your gp and ask for a referral to see a neuro then inform them that you were dx at which ever hospital it was. They will still have your records and would be able to fax over to your new neuro the relavent details. Hope this helps.
Janet
I also have PPMS,I go for a mot once a year at local hospital,never seen same doc twice in aa row.last time I was there doc told me,she feels helpless with MS patients,as there aint anything she can do,plus we all seem to know more than her ,lol,she did refer me to MS nurse,who im going to c in 2 weeks,first appointment ,was dx in 1999,we know whats best for us,imo docs use us for info,just keep in contact with ur gp,they know you,and will help u in anything you need
I have just seen my consultant and had another MRI which took two hours as it was a full head and spine scan, I know I am going to see my consultant and he’s going to make me feel like he doesn’t care a damn and that I leave thinking why did I waste my time and money for nothing again!
I didnt see a consultant for 19 years, and when i did i felt like it was a waste of time,they cant do anything for me,so why bother, the best help i have had is neuro physio.
Hi, well maybe you`re right not to see a neuro. PPMS sadly has no treatment to reduce attacks or slow progression (unless, of course, you try LDN, usually on private script)
I was suspected of having PPMS, as I have many of the symptoms. I take nerve pain and spasms/spasticity meds. Other than that, I don`t think there is anything else for PPMS.
I agree with PatB, in feeling that we may need reports from neuros to get our benefits.
I have seen 13 neuros in as many years, who keep changing their minds about my dx.
I am waiting to see a top MS chap in Leeds.
Dunno what Ill feel like after that. Maybe i wont want to see anymore.
My hubby thinks it is a waste of time and won`t take me to see this doc.
My sis is going with me, on patient transport.
luv Pollx
I was dx in 95 but nobody ever told me what type. I didn’t have relapses so I surmised it was benign or primary. Who knows? who cares? I didn’t see a neuro for 10 years until a new GP urged me to go. Things have now speeded up and I use a w/chair so it’s faster PP or secondary progressive but I still don’t know for sure and I still don’t care.
Once a year I go through the exhausting tarrarradidil of going to see the neuro for 10 minutes. Don’t get me wrong she’s very nice but until there’s some treatment for progressive all she’s got to offer me is a nice smile. I keep going in the hope of a breakthrough. I want to be at the front of the queue not at the back waiting for a referral.
Jane