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Because I dont have a dx ......

Hi folks

As most of you will know I dont have a concrete DX. My main issue is right leg spasticity and my walking has been deteriorating since 2010. Thankfully probably slower than would be expected for PPMS.

Without a DX I seem to get no sympathy from my family (I think the whole issue is pushed under the carpet). For example hubby keeps inviting his extended family over for dinner. My kids expect far too much and they are all over 16. My 20 year daughter groans when I ask her to carry the basket of washing down the stairs with “Why cant you do it”. They all complain bitterly if I ask them to take the bins out etc. I reckon that all this is my fault as when able I have done far too much for them and they refuse to admit that Mom is not quite supper Mom se was. Hubby feels hard done by too as after running around after my lazy kids all day I am too knackered to have fun under the sheets!

He is away with youngest son at the moment doing lots of U18 golf competitions. (watch out next Rory Mcllroy). Anyway my 20 year old daughter came home at 4am with a crowd. Then at 6am I was woken up by one of her mates comimg in to my room in his underpants, opening my wardrobe door looking for a toilet.

On another point is social services. I have a 21 year son with Downs Syndrome and autism and is totally incontinent and I only get 2 hours help a week with him at home. Although he is out at day care from 9 until 3. Now I know a lady near me has RRMS and a child with Downs. She gets help every day and frequent weekend respite. Her child is quite able and can toilet himself. She told me that once see got the MS dx the help came flooding in. Now i shouldnt say this but her MS must be mild as she runs most nights and plays tennis at the local club 2/3 times per week.

The thing is being in limbo gets you no help at all. Also I can look after my son but on top of being cook, cleaner taxi driver etc etc for everyone else it is just too much. If social services give help they put someone in to bath feed my son etc but I would prefer to do that myself and use them to iron or mop floor instead.

I really have had a rant.- sorry

Moyna xxx

PS I go for my baclofen trial on 11th August - fingers crossed

Moyna it is awful but unfortunately I know what you’re saying. I had a severe spinal cord injury in my neck and even though the surgeon was amazed that I was on my feet I got no help whatsoever, even after my surgery. But as soon as they dx me with PPMS, even though my symptoms were still exactly the same I suddenly got an OT, MS nurse and Neuro who are fantastic, and they took my continence issues seriously referring me to a urologist and continence nurse. Now I get all the help I need.

Don’t misunderstand me, I’m very grateful to everyone who helps, but why do they only come to your aid when you have a label, why not when symptoms appear?

As for your children, that’s a tough one. I’ve only got one child who’s 16 and at times a real help but we have weeks when she moans about anything I ask her to do. At one stage I went on strike!! I did what was absolutely necessary, but there were no treats and I wouldn’t drive her here and there, she wouldn’t even put her ironed clothes away, they were just thrown in her wardrobe or on the floor so I’d do her washing with mine but her things just got dumped in a pile for her. She didn’t like it and now knows that I won’t make any threats I won’t carry out.

Obviously your situation is more difficult with a son with Downs Syndrome but the others can look after themselves, it works! Can your OT not help? Surely your son is eligible for his own referral, if you don’t have one you can self refer. They look at your symptoms rather than dx. Don’t know what else to suggest sorry,

Cath xx

My heart really goes out to you Moyna. I know before I was diagnosed I could tell people didn’t believe me. Then I got dx with ME and people were a bit better. ME is now recognised by NICE so the authorities that be have to take it more seriously. I’m wondering if as a stop-gap until you can get an MS dx, whether it would be worthwhile trying for an ME dx… at least you would then be eligible for the help that you need. Please don’t think that I don’t think you have MS, I do, but it might be a practical answer for the time being. I think Cath’s suggestion of OT is very good. And it might make your family realise that there IS something wrong! I think you’re in a very difficult situation. Really don’t know what else to advise but hope you know you have friends on here who fully support you. Pat xx

Hi Moyna, Like Cath and Pat, I really feel for you. I wish there was something more we could do to help but I do think Caths suggestion of getting an OT in to assess your needs would be a good idea. As for your children, its hard when you have always been the one to do everything. Have you had a good talk to them about it? I think they are of an age where they should know how difficult it is for you. The trouble with a lot of us Mums is that its instinctive to try and protect your children but not if they are making life harder for you. If a talking too doesn’t help I think you need to go on strike for a few days as Cath did. My grandson is very poorly at the moment…I am praying its not MS, things are moving very very slowly for him too but my son is convinced that pester power works…he phones the hospital every couple of days and it has helped with getting various tests done more quickly. Is that something you could try? My only other thought is a private appointment…we shouldnt have to do this but its amazing how much more notice these consultants take when you are paying them! Thinking of you…keep us updated. Nina

Hi Moyna

I feel for you, I certainly think getting an OT would be a positive move, that would perhaps also be beneficial for your son, they could suggest things that would help with the symptoms you have, with or without a DX.

As for the others, definitely put your cards on the table, let them know just how difficult things are. I appreciate its hard, cos as mums we tend to protect them all the time, but I think now they need to know, and certainly do their share to help.

Wishing you all the best, take care and be kind to yourself.

Pam x

Thank you all for your kind words. My sons OT and social worker have been here after I complained that I am having problems. The thing is they see my only problem is slow walk with limp (which I suppose it is) an think that I can manage him which is probably true if that was all I had to do. When i say I find it hard because of al the other things on my list to do they just say I need to get the 4 other very abled bodies in the house to help which I know is true but easier said than done.

I have seen a total of 3 neuros in as many years (4 in total if you count th one I saw in 1991) so I think it was really MS then it would be evident now as they have certainly searched for it. i reckon the first guy is right about the radiation i got in 1990 has caused my cervical cord to age more quickly than the norm.

It doesnt register with people that radiation myelopathy is that bad given that I had the treatment in 1991 so people think there is not much wrong with me. When people hear MS or Cancer they jump to the rescue out of instinct. In 1991 when had the lymphoma I had the world wanting to help me and I didnt feel that bad. This is far worse albeit not life threatening.

I should not moan as if someone told me in 1990 that I would have 4 children and be still living at 50 with a bit of mobility issues I would have been very happy. At that time I could have died.

Take Care and thank

Moyna xxx

Moyna I had cervical myelopathy so I fully understand where you’re coming from and sympathise. I take my hat off to you coping as you do. Maybe the private consultation as Nina suggested is the way to go to get answers if you can manage it. And although going on strike was very difficult to do it achieved so much. I’m getting very close to trying it again as things are getting out of control once more!!!

Nina I hope your grandson is okay, how old is he? Are his symptoms neurological too? Please let us know how he gets on and remember we’re all here for you.

Cath xx

Cath, thanks for asking. He is ten. Some of the symptoms could be neurological. He has had loads of tests, he had an ECG on Monday and now we are waiting for an MRI. He has been away from school for nearly two terms now. He has tried to go in a couple of times but has only managed a couple of hours before he has had to come home. Its heart breaking to see he looks like a little ghost ! Nina x

Hi Nina

Fingers crossed that they find out the problem with your little grandson, and it is easily treatable.

Pam x

Thanks Pam, Thats what I am hoping for too. Praying I haven’t passed on any of my rubbish genes to him. Nina x

My grandsons MRI appointment has just come through…a week tomorrow…all extremities well and truly crossed! Nina x

Hi Moyna, sorry it’s a flying visit as I’m at work so no spaces/return button etc. 1. You must get sooooooo frustrated and it definitely sounds like you should get more respite care that is for sure! The lack of Dx must make your life so difficult. I won’t type too much more now as this will be one whopping paragraph. I’m the eldest of 7, there were 3 of us then my Mum adopted 3 (was only supposed to be one?!) and my half-sister arrived, so we’re a bit of a crazy family. I can’t say all publicly but I do have a brother with Aspergers… and another with a complex, so way more complicated (this is what happens when people drink heavily when pregnant!). So, what I’m trying to say if my gut feeling is that I’d put you on the same saint-like category as my Mum - so, rant away anytime and PM anytime - you deserve and need more respite, not to mention a diagnosis Take care sweetie, you CAN handle just about anything that life throws your way, be proud of THAT for sure Sonia xx

[quote=“Ninagrace7”] My grandsons MRI appointment has just come through…a week tomorrow…all extremities well and truly crossed! Nina x [/quote] Nina… everything crossed for grandson… but also please keep in mind that with new treatments… stem cell looking very good… new DMD’s… your grandson is NOT looking at a lifetime of MS symptoms (IF that is the problem). For young people being dx now the future is looking very optimistic. Thinking of you and your grandson, Pat xx

Thanks so much Pat! My neuro told me much the same thing, apparently the new DDMs are very efficient. Will let you all know as soon as I know. Am on tenterhooks as I am sure you can imagine! Nina x

Good luck and best wishes to your Grandson Nina, and although easier said then done, try not to get too stressed, it will only aggregate your symptoms.

Pam x

Best of luck for your grandson Nina, I really hope whatever he’s got its treatable. Limbs crossed for you xxx

Cath

Thanks Pam and Cath, Hope you are both ok today. Nina x