How often do you have these? I had one three years ago. was told they found lesions and that I needed a LP and steroids a year later I had them. I was told things had been found in the LP, but I didn’t ask I just seem to sit there and say nothing and tell him i’m ok my mum goes mad about this.But to be honest I don’t no what to say or ask! The neurologist thinks i’ts ms and that it’s more than likely ppms and that is it!!! I get DLA middle rate and the high rate mobility. i’m in the work related group of ESA, Don’t no how long it will be before dx well over three years now and symptoms for about a year before that will just have to wait and see!
Hi Tess, For a formal diagnosis of MS, it needs to be proved it was more than just an isolated incident. If it’s three years on, and you are still having problems, it should be more than enough time to do another scan to see how - if at all - things have changed. I had MRIs just six months apart, and the changes were sufficient to get me a diagnosis of RRMS. Admittedly, the rules may be slightly different for PPMS, which I don’t know an awful lot about. But I should have thought it’s certainly worth scanning again, after three years, and that there ought to be some new evidence by now! I’m inclined to agree with your mum, that you need to be a little bit more assertive. Such as asking for clarification about exactly what’s been found so far, what (if anything) still stands in the way of a formal diagnosis, and whether there would be anything to be gained from a repeat scan, as it’s three years since the last one, and still no answers! If you don’t ask questions, they might assume it’s because you’re comfortable as things are, and don’t really want to know. Also, it’s not impossible that patients do get overlooked. I can’t understand why it took a year to organise an LP and a course of steroids in the first place, if your neuro had already said you needed them. I know there’s usually a waiting list for tests and investigations, but a year is silly! And steroids a year after the problem that prompted a trip to the doctor’s would probably be pointless anyway. They are usually offered to speed recovery from an “attack”. But not so often in PPMS, because people with PPMS don’t tend to have “attacks”, as such. And if you did have one, a year after the event is a bit late to bother. So something’s not quite right, here. Is it possible you have been diagnosed, but your neuro has been vague about telling you? Leaving aside detail about which particular type of MS, there are only four possible outcomes, from an MS investigation: i. Not MS ii. Possible MS iii. Probable MS iv. MS As you’ve already had an abnormal MRI and an abnormal LP, apparently, it would be helpful to know where you are in this lot. Some people progress from “possible” through to a confirmed diagnosis, as more evidence emerges. I skipped “possible” altogether, and began at “probable”. Many people (not all) diagnosed with “probable” do go on to get a confirmed diagnosis, as it usually means classic signs are there, but perhaps not in sufficient number or over long enough time to be absolutely sure. Keep on at them. Diagnosis can take a very long time, but it’s usually not because anyone’s being deliberately awkward. It can be a very tough one to diagnose, and there might be something about your case that just doesn’t fit. All the best, Tina
Thanks for the info Tina he did say prob ms, but that was such a long time ago nothing else. My disability has steadily got worse my right leg balance fatigue and pain . I see him about once a year and that was a few months ago i will ask more questions next time i’m sick of this!. Iv’e had physio work for a lot of the time on and off. Lots of different braces and calipers non of them work :x . For the amount of walking i can do i’m not going to bother with them anymore. He asks me every time if the ms nurse has been in touch, the answer answer is always no! i no they are busy but a simple hello! My doctor is great, and had an OT round to see what i needed for my home, i got a stair lift and a wet room which has made things so much easier. I take 2700mg of Gabapentin and Baclofen i still have a lot of pain but they really help with spasms and cramp. Tracy x
Also the right side of my face and head went numb for a couple of months, it is ok now but has not fully gone don’t no if it ever will.He said this might be a slight relapse that was all :? half my tongue and chin still feel very strange, were as before were very numb and tight. I had more steroids they did nothing so didn’t take the second course Tracy x
It’s definitely time to get tough with your neurologist. It’s completely ridiculous that you haven’t had a diagnosis by now and he’s just pottering along not worrying about it and not doing a whole lot to get you the support you are entitled to. A diagnosis of PPMS requires a history of worsening symptoms for a year plus 2 of the following 3 things: lesions in at least two typical MS places in the brain, at least two lesions in the spine, a positive LP. As you aren’t due to see him for a while, I recommend you see your GP and ask him/her to write to the neuro asking him to clarify your diagnosis. If the neuro won’t commit, then get yourself a second opinion from an MS specialist. In fact, it sounds like you might be better asking for a second opinion straight away! Waiting a year for steroids is a complete nonsense!!! If your mobility is very bad, you should probably be in the support group for ESA. Please get some help from the CAB to complete your next application (or your appeal, if you still have time). You may well also qualify for high rate care DLA. It is a sad fact that if we don’t stick up for ourselves these days, we get dumped on Time to get mean! Karen x
Thanks for the advice Karen, I will get in touch with my GP see if he can explain thing to me better! It’s funny every time I go to see an adviser at the benefits office, they always say to me what jobs do you think you can do :x I then explain my disabilities to them and ask them to try and come up with one :!: because I can’t I don’t really have many skills I am a trained hairdresser but gave that up when i had my daughter 19 years ago. It’s not really a job i can do now, and i never did anything else I’m not stupid but just don’t have many skills fact. Just don’t no what they want me to say, I have never appealed but think that i will do next time. I just wish they came around to your home and lived with me for a while and just see what i get up to in a day, the things i can’t do and the things that get left until someone else does them and feel the pain of every step :evil: I no people with bad backs who go around on crutches then sit on plane to mexico for hours with high heels on and walk like there is nothing wrong. then come home and tell me all about the holiday all the walking they have done! i then bump into the same person in the supermarket pushing a loaded up trolly with heels on again :evil: so i ask her were her crutches are and she has the cheek to tell me that she only use them if she thinks people are watching her or if she goes to see the doctor. OMG how do these people get away with it!!!. all i can say is these people give the disabled a bad name and these very un disabled leaches get away with it all day every day :evil: Tracyx