Our son has PPMS and Insulin Dependent Diabetes he is registered blind he is 41. He took insulin dependent diabetes when he was 6 years old and MS when he was 36. His eye problems are more MS related than the Type 1 Diabetes. He has recently started gabapentin to try to stop the flickering in his eyes and hopefully let him see better. He also has bowel and bladder problems and his walking is bad he has a walker but drags a foot so is on waiting list for splint. He doesn’t really walk enough for a splint but he will give it a try. He has a wheelchair but not a powered one he does not see enough to use one of these. We actually thought today he was walking more easily not so stiffly because sometimes his legs do not move. We think the gabapentin is helping already and he has only been taking it three days. His eyes are just the same so far. We are parents his father is 75 and I am 71. We manage him on our own we are quite fit, we know that one day if the condition worsens, we will need help but not yet. We would like to know if there is anyone else with the same two autoimmune diseases and if their eyes are affected and how they cope. He has a suprapubic catheter. He has only had MS since 2008/09 he was a chemist and lived away from home. He gets oxygen therapy and physiotherapy and reflexology. He gets very tired very easily. Cannot stand heat / makes him ill like travel sickness. Can anyone give us information on a drug they take to help the conditions. Thank you.
Hello and a big welcome to the forum…
I’m so sorry to hear that your son has Diabetes and PPMS… and all the problems that come with them both.
Gabapentin is a very good drug and lots of us on here use it… so hopefully it will continue to help him.
Unfortunately there are not a whole lot of treatments for PPMS… although there is a lot of research going on… but for now it is really only drugs that control pain.
There is one drug which some people with MS find really helpful. It’s called Low Dose Naltrexone or LDN. It isn’t always easy to get prescribed as it hasn’t been through all the tests that NICE demand… but it’s been around for a long time. Most people have to buy it privately through the internet. Look on the ‘LDN Research Trust’ website to read more about it. I don’t take it myself (I have slow progressing PPMS) but given your son’s problems it would be worth a try. Many people with MS swear by it.
Most of your son’s symptoms are, I’m sorry to say, pretty typical of PPMS. Heat can be really hard to cope with as it makes symptoms worse. Fatigue is one of the most common problems and is actually the main reason why lots of people with MS cannot work.
Is your son seeing a neurologist at all? I’m wondering if there is something they could do to help his eyes. If he is not, I suggest you see your GP and ask for referal, or phone the last neurologist that he saw and ask for an appointment. Is he seeing an MS nurse?
I can really understand your concerns for the future. But try and remember that lots of people live independently with chronic conditions, with the help of carers coming in.
Is your son getting all the benefits he should get? ESA (or the old Incapacity Benefit) and DLA? He is entitled to claim both.
Would it help if he had carers coming in now? It would give you a bit of a break… although I perfectly understand if you prefer to be carers for now. But if you think you could all benefit from a bit of extra help, see your GP or phone social services to be assessed for a care package.
I wish there was something more positive I could say to you, but at the moment PPMS has very little to help in the way of treatment. We are all hoping that new treatments will come along very soon!
One more thing, is your son a member of a local MS group? I think it’s a great help if he could meet others with MS. If you go to the top of the page and click on ‘Near me’ you will see where your nearest group is.
What loving parents you are and I am filled with admiration for you, but I also understand how very difficult this must be for you all.
Hi. I can’t really add much to what Pat has said except that I also take Gabapentin and it helps with the stiffness. If I miss a dose I can feel it the next day. I take my hat off to all of you, both of you as parents to devote yourselves as you do to take care of your son, and to him who must be so frustrated from going from being a chemist to requiring so much assistance.
It’s very difficult to accept help, and by the sounds of it, he needs quite a bit. This might sound personal, but how would he feel about someone coming in now and again to give you some time out? I’m only asking as I’ve decided to employ someone to come in and help me for a while once a week. It’s not because I don’t want to have my parents help as they’ve offered, but it makes me feel better paying someone who needs the work and I’m giving them the peace of mind that I’m not killing myself doing jobs they know I can’t manage. I suppose it’s about me still having some control. Please, I’m not trying to interfere but it’s an issue that I had when I became less able to manage.
The issue that Pat raised about benefits is also valid. If you need help claiming, my union sent me some excellent guides on claiming ESA and DLA which I could e mail to you, they are legal but explain everything so well and ensure you get what you’re entitled to.
Take care and I really think you’re marvellous in everything you’re doing for your son. He’s very lucky to have you. I hope you get all the answers you require.
We still look after our son who is now much worse. Does anyone else have bad bowel problems like our son. We give him four movicol each day two in the morning and two at lunch time. He has a narrowing of his bowel due to MS and unless he gets the four movicol his bowel blocks further up. He has just been on respite for a week and because his bowel is very thin the respite only give him two movicol. He has now blocked further up and only the movicol is coming through him. We ask them to continue with the four movicol and they won’t do it and we have this problem every time after he has been there for a week. Does anyone else have bowel problems like this and take four movicol daily and is it safe for that amount to be taken.
Hi there, just giving my experimental view on the problems. My leg was like a balloon & stiff as a board. Taking super strength Apple Cider Vinigar seems to of helped. I add is to sauces now & it seems to unblock bowel problems. I’ve been trialing some medical grade Hemp products too. For pain & irritations. That’s doing good too. Prune juice & plenty of fibre helps too. Enjoy some fresh air out there & stay calm folks.
Hi to Sons Parents. Bowel problems are a big problem in MS, bowel impaction is a regular thing and you’ve discovered four movicol a day helps to prevent the up.
Pat gives terrific information and valid points. As you have managed to find some respite, surely they have to follow the prescription dose.
Have you got a Neurologist and a Multiple Sclerosis Specialist Nurse? Did the Continence Nurse Service arrange the Supra Pubic Catheter? They should be able to treat the bowel to function better and state the doseage that everyone must adhere to, including respite care.
Neuro’s specialise in M.S and keep up to date with the latest news and research. Thankfully, PPMS is now receiving more research than ever.
Good luck with your son, as such dedicated parents. you both deserve a medal xx
I was diagnosed with Ms 5 years ago and the end of last year I was diagnosed with progress secondary Ms I have had swollen feet and ankles I went to doctors they said it not water it was due to my ms it is so painful cannot walk on them at all I am not on any medication now I was on tecideriea I have not been on them now for 3 months they said there is no medication for the secondary progress Ms I
I am just coming BACK to a reality that everyone said I was CRAZY about!!! my son has PPMS and is struggling to say the least. I found out today that his sister(not my child) has also been diagnosed with the same!!! I am struggling with the 5Ws I’m not going to lie I am so ANGRY I can’t breath anymore!!! I need to know if I should PUSH the issue of faimly testing NOW that there are TWO children with same issues different mothers???