My husband has recently been told that he probably has PPMS and that he has probably had it for around 7 years… had MRI results back
'MRI cervical spine was normal. MRI brain showed a few small non-specific white matter lesions in the cerebrum. There was also subtle subcortical white matter signal abnormalityin the parasagittal frontal regions with subtle ulegyria and mild narrowing of the anterior body of the corpus callosum - these minor findings are similar to those whom have had perinatal ischaemic injury and are not related to his current problems. There was an area in the right pons suspicious of demyelination, adjacent to the right trigerminal root entry zone, but this area is prone to artefact so this finding is not definate.
My suspicion looking at the images is that the right pontine lesions is genuine and that there is a demyelinating process in the form of primary progressive multiple schlerosis. Because of the equivocal scans we will need further tests. I will arrange a day unit admission for lumbar puncture. I will also arrange evoked potentials (VEPs and SSEPs) to see if demyelination can be confirmed electronically.’
We have an appointment for this Wednesday for VEPs and the lumbar puncture which is progress…
Its been a pretty scary and stressful episode in our lives. Since summer last year before my hubby was referred to neurology his symptoms seemed to have started to progress at an alarming rate. He has gone from being a very active man who would occasionally run up the stairs 3 at a time and spend 3 days a week for 4 hours a day at our allotment digging and weeding etc to not being able to walk on uneven ground, struggling with the stairs, loss of balance an co-ordination, bladder problems, concentration problems and visual disturbances etc which means he has just put hi computer in the bin as he cant use it anymore… we’ve been trying to get help filling out DLA forms to hopefully get him out of the house and not staring at four walls, I have had 2 appointments with our local councillor (town hall councillor)for our area who has let us down on two seperate occasions and not had the courtesy to phone us or email to apologise or explain in any way… the forms were due to be sent back on 12th december. I’ve been in touch with Neurosupport in Liverpool and the lady there gave me her earliest appointment which was for the 9th Jan which we had to cancel as the appointment for the LP and VEPs came through so I was given 20th January to come in , I had a phone call yesterday to let me know that it has to be put back now till 6th Feb… as she has an appeal she has to attend on that day. My husband has been refered to Occupational Therapy, Social Services and Physiotherapy on the 18th November … we have yet to hear from any of them… I spent two hours on new years eve trying to fill out ‘ATOS Healthcare’ forms and the other half of the day in the casualty department of our local hospital with my husband who had a bad fall and has a suspected fractured right wrist which makes it even more difficult for him to get out even using his stick… Christmas was really difficult too as we had our daughter and son in law come up for a few days to visit with our beautiful grandchildren, hubby spent most of christmas in bed with some form of pain in his face, neck, head and jaw with no option other than to take the dihydracodeine that the emergency doctor prescribed for the pain… thank god that seems to have settled down.
I’m doing my best to try and get things sorted out, but sometimes we feel so frustrated, angry, stressed and depressed about it all. Everything is happening in super slow motion and I feel that a lot of people out there really dont give a toss… All I want is for things to be a little easier and to try and lift some of the stress of everything from his shoulders and try and sort everything out for him as he has more than enough to deal with facing up to the prospect of his condition. I am really worried that everything else that is going on is putting him under more stress and have had people tell me that stress greatly affects people with ppms and can make things worse…
Sorry you good people are having to listen to me venting my spleen but I just dont know who else to yell at …
Hi there, You yell away, that’s what we’re here for. If we can support in any way at all we will. You are not on your own! Apparently the best place to get help for DLA applications is the benefits and works site. It costs £20 per year to belong but they are brilliant at helping with all the form filling. All the waiting for appointments is so depressing but they will arrive, eventually! Once you have the VEPs and LP done you will probably be a long way down the road to dx. Please try to keep your spirits up, things will settle and hopefully your husband will receive the help he needs. You have got a lot on your shoulders too - so try to give yourself ‘me time’. It is very important as you need to be fit to cope with everything going on. I hope you move on soon in the dx journey and that you feel that you can see some light at the end of the tunnel. Teresa xx
I’ve just realized that I didn’t answer the main question of your post. Yes, definitely stress does not help this illness at all. It makes us all feel worse. Try to live a day at a time - without worrying about what comes next. We don’t have a huge amount of control over things, so it’s best not to penk (worry) too much! Teresa xx
Hi, I’m so sorry things are so tough for you & your husband right now. Keep in mind that ppms can stop progressing… can go into what’s called a plateau, or progression can slow right down. Just because it’s been progressing quickly does not mean it will continue to do so.
Teresa is right… it’s best to join the website Benefits and Work. Once a member they have step by step guides to applying to all benefits. I got turned down for DLA first time and when I re-applied I used their guide and got awarded the benefit. You need to put MUCH MORE details than you would imagine. Do extra pages and write on the form ‘see attachment’. Repeat yourself in answers… don’t assume that because you gave a detail of a problem to one question that you don’t need to repeat it to answer another question. You do.
Stress is just terrible for ppms. I don’t know why it is. Any small amount of stress makes my symptoms much much worse. Even something quite trivial will send me into meltdown. I have learnt to live my life very quietly. I avoid stress as much as possible. But of course it’s impossible to not be exposed to stress. You can only do your best but don’t beat yourself up… you can’t shield him from all stress.
I agree with Teresa that you need to look after yourself as well. This is very hard on partners… but hopefully once you get a firm dx things will settle down a bit. At least then you are sure of what you are dealing with.
Also keep in mind that there really is a lot of research going on into ppms right now. New treatments will be coming along very soon. Already they are talking about this drug of high blood pressure looking like it slows the progession of ppms. So there is hope… more hope than there has ever been before.
People often talk about ‘fighting’ a disease… but there is no point in fighting ppms. In fact in my experience it makes it worse. You have to go with it… which often does mean resting a great deal… often spending days in bed. Believe it or not it does get easier with time. You get used to it. You are going through the worst bit right now… so it will get easier in time.
Remember, you are among friends here. Come and cry, rant… or laugh… whatever, whenever you like. We will support you as much as possible.
Hi handbag, you re in the right place to yell. Nobody here will question what you are saying as we have been through it or are still going through it. It seems obvious to the casual onlooker that you need help and deserve it, but the powers that be are not what you would call sympathetic to the obvious. As you have discovered they are one of the biggest sources of stress which we have no choice but to deal with. It may not be much comfort but we are on your side and wish your husband and you the best with this journey.
As for your useless town councillor, report them to the head of the council or the local government ombudsman, when you feel up to it.
Thank you for your replies. it really is nice to have somewhere I can go and have a good old yell and people will understand, it means a lot.
I feel much much better today and now I’ve had a shout and a good cry
I just get so frustrated with everything. All I want to do is get things sorted out for my other half so that he doesnt have to worry about the everyday stuff anymore. All the stuff like benefits, physio, occupational health etc that I can help get sorted so that everything is in place and my hubby can concentrate on getting on with his life. All the stuff that would make life a little bit easier. I know I am just being impatient and I should slow down and let things take their course … but i suppose it is my way of dealing with things.
Anyway we arent going to look to far ahead for now. He has his appointment on Wednesday so maybe we’ll know a little bit more then.
Once again thank you.