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New to the PPMS forum!!

Hi All,

Hope the day is treating you ok?

I have been on the forum for a while. I was diagnosed with RRMS four years after literally years of symptoms. The doctors now reckon I may have had MS for twenty years prior to diagnosis. This week I saw my specialist. After a year of watching me and my symptoms I have now been upgraded!! I have joined your special group of PPMS. It was not a shock as I had suspected it, but I suppose it is a different thing to have it confirmed.

When I was first told I just thought “oh well, same disease, different day”. That is what I told everyone. However, as the days have progressed I can feel I am changing. I suffer from depression anyway, for which I take tablets. I can mostly control the depression that way. I still have down days but mostly I can keep going.

Now it is different. I just feel that I want to get into a big bed, go to sleep and not wake up again. I would not do anything to myself, so don’t worry about that. I just feel it would be easier for me, everyone else, if I was not around. I am unable tot ake anything for my nerve pain as I am allergic to all drugs I have taken. I ache all over, and when I get into bed that is when I feel a little less pain and feel more comfortable. My fatigue is terrible at the moment, I feel I could sleep all day.

My husband tries to understand but I don’t think he does. How could he? He is left alone to cope with the house, family etc. However, I feel so tired I couldn’t care less at the moment, how terrible is that?

Could anyone advise me what to do. I just feel like giving up. I know you will understand how I am feeling and will be able to give me some words to help. I know there are a lot worse people off than me, but at the moment that though isn’t helping either. My family don’t understand the MS and just ignore it, so no help there. Friends live a long way away and don’t visit me.

Thanks in advance everyone.

Anne

Hi Anne,

Welcome to our lovely forum,

I’m newly diagnosed so won’t be much help to you, there are, however, some wonderful people on here who can give you lots of advice, support and a shoulder if you need it. They have been a blessing to me

My family and friends live 2 hours from me so I understand how you feel in that respect. I used to walk 10 miles a day and now sometimes I can’t walk 5 mins to the shop so I go for days sitting in the house alone while partner is a work. There’s to much thinking time then.

I hope you’ll stay and take comfort from this forum.

Take good care

Oonagh

PS…loved your ‘upgraded’ comment

Hi Anne, I’m so sorry you are having a rough time hon. It is very normal to feel depressed soon after dx and especially when your symptoms are getting you down.

Important to remember that PPMS is like RRMS in that it is different for everyone. Some people think that PPMS is the ‘worst MS’ but it’s simply not true. Some people can get very aggresive RRMS that quickly goes into SPMS (secondary progressive).

For many of us with PPMS it is slow progressing and it can even stop progressing altogether.

However all of this rational stuff does not help at all when you’re feeling so bad. Hang in there and remember we are all here for you. You know it is very hard when you first give up work and find yourself home alone… but it does get easier. I live on my own and often spend a day without seeing a soul… but this is not asking for sympathy because I’m fine with it. It took time though. So give yourself time. Try to plan nice things to do during the day. A favourite film. A good book. Do you play games on the computer? I’m sorry if this sounds like I don’t understand because I do. Do you plan things to do during the day?

Have you tried having a really good talk with your partner? He or she might understand more than you realise. And talking about how you feel really can help much more than you can imagine.

Come back and see us again soon hon.

Pat x

Hi, I`m just wondering if the reason for this new low feeling could be due to the fact that you say your family ignores your condition.

It is possible that they are freaked out by it and feel if they say anything about it, you may not react well.

I`ve known people like that. if I have a problem, they just dont know what to say or do, so they say and do nothing.

This action hurts and upsets me, like it is doing to you.

What about getting some leaflets from the MSS for them to read. You dont need to make a big thing about it, maybe just leave them where they will be seen. If after a few days no-one mentions them, then you could say, Oh, have you seen those info sheets I left out? depending on their answer, you could then explain how you feel. try to do it in a calm way, or they may just clam up again.

luv Pollx

Thanks so much Pat, Poll and Oonagh. I knew someone would get back to me. It is so nice to know that someone cares enough to reply, it means a lot to me.

Regarding my family. I told my sister about the PPMS and said if she wanted to know more talk to me about it. She replied that she would not google anything because there is too much info to worry her! That is the stance of most of my family. They don’t want to know what the problem is, then they don’t have to deal with it. IT is too frightening for them. When I was first diagnosed I was told not to tell my Mum, the Kids (all grown up) in the family. Don’t want to frighten them all. This came from a member of my close family, don’t tell. And apart from one person, that is the way it has changed. If I try and talk to anyone about it, they just change the subject. My Mum tells me she knows how bad it is, she feels the same! I don’t think they are going to change. The most they think is that I get a little tired sometimes. I wish!!

I take comfort from this site. I don’t always write but I read often.

I wish you all a good weekend and hope that Sunday is good to you.

Night

Anne

Good Lord Anne they are in such terrible denial (like Cleopatra… Queen of de Nile… LOL)

I’m trying to think how you can handle this. Poll’s idea of leaving fact sheets around is very good. You could write each one of them a letter saying that you really need them to understand about MS and that it upsets you that they refuse to listen. Include in each letter the fact sheet on PPMS (there is a good one on this site as Poll says and also on a site called the MS Trust).

It is like they are all babies that cannot be upset or frightened. You must feel like shaking them! I feel like shaking them!!!

Is there not one member of the family, or a family friend, who you could talk to about this? And then maybe the could talk to the rest of the family?

The thing about ‘getting tired’ is very common I’m afraid. Drives us all mad. People say ‘oh yes I get tired too’. Very bloody annoying! MS is fatigue is nothing like ‘being tired’.

Hang on in there Anne. Think about the fact sheet and letters idea. It is hard to open up emotionally to family but sometimes needs must.

Take care,

Pat x

Hi Anne

Just wanted to say welcome to our “special gang”

It is a difficult time for you, but I just wanted to say hang in there,

take one day at a time, and dont be too hard on yourself.

You have been given some good advice regarding your family,

I think we all know people like that who are too frightened to find

out about it, so go into complete denial. I must admit, yonks ago

I was that person.

Take care

Pam x

Anne,

I have just logged in and read your post and replies from others. Oh I can so empathise and sympathise. It sounds like we have similar families which, as Pat asays, must be treated like babies and protected at all costs, never mind YOU! (I call them the ostriches.) I can’t really add to what the others have said, 'cept to say that please know that you have another ‘supporter’. Lotsa love, Debs x

Hi all,

Thanks for your replies. Glad I have another supported Debs!.

To give you all an update. I have tried leaflets in the past but only my sister in law took an interest. She is the one in the family who is really interested and had taken the time to find things out. I hagve decided that my family will never change. I was on the phone to my sister the other day. I told her about my new diagnosis. She again said that she would not google it. So I said, then what can I tell you?!! I gave her the “best” side of PPMS, again, me, trying not to frighten her. Not a word was said. She changed the subject immediately and that was it. Over with.

I was this week diagnosed with an underactive thryoid, something that my mother has and nmy grandmother had. When I told my Mum she again said nothing. Just changed the conversation to something about herself.

So you see, they aren’t going to change and I have to let go of the thought that they might.

By the way, anyone been diagnosed with underactive thryoid as well? Another auto immune problem! How many shall I go for?

Be as well as you can be and enjoy your day.

Anne

x

I was only dx last November so I can understand your problems, for me I’ve come to accept what’s going on if friends or relatives can’t that’s their problem I have got time to waste on them I find fellow MSers the best to talk to either through this site or local MS society, or once you go public so to speak its amazing how many fellow suffers you meet Hope you find your own way to get through this but you will Take care x Tony

Hi Anne, I think maybe you should not give up on talking about it. SOME of the info must get into their brains! Also, the more you talk about it the more ‘normal’ it will become for them… so even though it must be very disheartening when they change the subject, I think you should stick with it. At least once in every conversation with a family member mention your MS and now the under-active thyroid.

Yes love you do seem to be going for a record in auto immune conditions!!! I have a niece with under-active thyroid… she was quite poorly but now on the drugs she is great… so I think the drugs are very good.

Take care hon,

Pat x

Hi Anne,

I also have a best friend with an underactive thyroid, since starting the drugs she is fine now.

Thinking of you

Oonagh

xxxx

Thanks everyone for your replies. I have been telling the doctors for years that I thought there was something wrong with my throid. Not that I am a doctor or anything but I did a lot of reading about it. In fact that is the road I was going down before I was diagnosed with MS. So I am glad at last that someone has listened to me. Be interesting to see if the drugs make me feel better.

Have a good evening all.

Anne

x

Hi Anne, Welcome to the site - I’m sorry that you are having such a hard time at the moment and that your family are not being very supportive. My parents almost ignore the fact that I have it too - they have no idea what my life is really like. My husband had an overactive thyroid years ago. He was given a radioactive drink which destroyed a lot of his thyroid and now it is underactive! He has it under control with thyroxin now but has a permanent irregular heartbeat and has beta blockers and warfarin for that too. Hope you get sorted soon! Take care, Teresa xx

Hi Anne,

I dont know what planet your family are on but it is not this one. The main thing is not to give up.

It is hard for partners to understand, but they can listen as we all need someone to talk to. The Ostriches are emotionally immature if they want to ignore your dx and i can only hope they never have to deal with what we have to because they will never cope.

I feel angry on your behalf, this is not how it should be!!!

Keep fighting and best wishes.

Oscar1

(unimpressed from the SW)

Hi Anne and welcome. My heart goes out to you and I can empathise with you. It’s funny I think recent research shows that 71per cent of the population do not understand ms no matter ppms. I have been in your situation I found it took me weeks after diagnosis to tell family or friends. No one wanted my father to know as it would upset him my mother had died years before. None of my sisters came over to see me after my shock diagnosis which I wasn’t expecting (they live in Ireland). I was left with two young children in shock to cope alone. Like you my mother in law started talking about herself! She also lives in a different part of the UK. One friend said you can’t have ms your too happy when I asked what she meant she said all ms patients are miserable! She is a nurse. It felt a very lonely scary time. You feel you can’t talk to anyone. After getting over the shock which does take time I decided I couldn’t change people. I could either sink or swim and I decided to swim. I try where possible to plan something to look forward to be it just going up town on my scooter, visiting a friend and making the effort to visit family. Even when told it was ppms a close friend said to me after a hospital stay following an infection where my symptoms temporarily worsened why rant they treating your ms properly? I explained to her that I had already told her it was ppms and her reply was an infection wouldn’t do that to you. She obviously has never bothered to even research anything about ms. My husband rang my sister and asked her to tell my other siblings. When he never heard anything back her reply was well I don’t want to worry them. I had septicaemia at the time. Everyone reacts differently but it’s especially hard when you feel you can’t talk to those close to you. If you try again and you get nowhere find other avenues like joining your local ms society and put yourself first. Set yourself small achieve able goals. Chat to people here. Don’t keep it in. You may find your depression improves as your thyroid is treated. An under active thyroid can cause depression and lots of other things. You may feel better in yourself in time. You may have to accept your family won’t change but you can live your life take charge of it and I wish you all the luck in the world. I really do understand xx

Hello everyone out there with PPMS, can I join you please? I was diagnosed just over a year ago but haven’t been on a forum like this before. I have only just discovered it exists! Most of the time I’m OK but there are times when I get a little depressed and scared, and it is a comfort to know I am not alone. I know its important to maintain a positive attitude, and keep an open mind about the things you can do to help yourself. Does anyone have any suggestions about positive steps to slow or halt progression? I am already taking high dose D3 (5,000 i.u.) and vitamin B12, which have been recommended to me. Anyway, nice to be able to have a chat!

Hello Bridget, I was also dx’d just over a year ago. It is depressing and scary to have MS but we try our hardest on here to remain as positive as possible. Welcome to our motley crew! One of the things you may want to consider is trying LDN which has worked well for a lot of MSers. Our resident expert on LDN is Whammel. I’m sure he will give you good advice regarding its use. I tried it but it wasn’t for me. I may return to it in the future! Hope you’ll return to us! Teresa xx

hello all ,this is all new to me ,only found out i had ppms ,a few month ago ,having reached the grand old age of 65 lol ,didnt think you could get it at that age ,well hey ho ,learning to live with it ,but what worries me more ,is while having tests done they discovered both my arterys in my neck are severly blocked one completely and the other one 90% blocked ,bit strang as it may seem the symptons for this are practally the same as ms ,most days i dont know which one is playing up ,see consultant in three weeks discuss it with him ,looks like a major opperation is on the cards ,was just coming to terms with ms ,well i supose if it wasnt for testing for ms then i would never had known ,at least they can do something ,then all i will be left with is ms lol still very worrying ,well thank you for reading this sometimes it helps to talk to strangers

Hey Maggs, Sorry for your double trouble. The PPMS diagnosis is enough to take on board without the rest. I hope they manage to sort out your blocked arteries. I am sure your life will improve if they do! I hope you have plenty of support from your family during this difficult time. Just take things a day at a time. Try not to cope with everything at once. You can always come on here and someone will listen and chat with you. Take care, Teresa xx