Hi I have a suspicion I might be quite old compared to many on this forum.
I am 68 and and am awaiting confirmation of ms
Looking back I have probably had ms if that’s what is confirmed for quite a while now, probably 10 years.
Since December 21 I started lose the use of my legs although I can walk about 20 yards.
I have numbness in my face hands and legs and have cognitive problems.
I had a lumber puncture on the 27th of June but still haven’t heard, I did telephone the hospital and spoke to the registrar who said they were awaiting confirmation but all the evidence to date pointed to PPMS.
I phone again today and was told the results of the lumbar puncture were in but I could not be informed of the results over the phone or email it had to be by a letter so it looks like it’s going to be the very least next week.
I am finding the waiting very hard and I am getting very down.
My wife is very supportive but I know the strain is getting to her.
Our two sons live a long way from us so my wife has had to do a lot of the jobs I used to do but now can’t.
I get extremely exhausted very easily and feel very guilty that I am a total spare part.
The guilt is something I find difficult to handle.
Can anyone on the forum give me any advice on how to handle it?
Hi @Bartonman … wow, if I have read your post correctly, although you had suspicions, you are expecting quite a quick ‘diagnosis’.
There are no hard and fast rules when comes to coping with a new diagnosis, everyone is so different. As difficult as it is, you need to take a step back, wait for all the results to be in and go from there. I know easier said than done.
Just to say, and for all readers and posters you are not useless, you are still important to those that love you and to those that you love,
It is MS that has put physical limitations on you, and not you. You need time to process what you are expecting to be told.
I’m sure if you read through the various posts you will see that despite an unwelcome illness there is life ‘beyond the fringe’.
Im so sorry to hear this. At any age its a difficult pill to swallow. Unfortunately, MS takes no notice of age. The best advice i can give is my mantra ‘LIVE the good days, get through the rest’.
Im sure you know by now our journeys are all different. We are snowflakes, unique and changing the way nature intended us too.
Of course these are lovely positive words but please dont ever feel guilty, this is the life youve been given & the people sharing it with you, do it because they care/love you.
Once the wait is over and a diagnosis is confirmed you can battle this head on.
I have every faith in you, reaching out at this vulnerable time shows the strength you have…
Always here, whatever your age, gender or symptoms.
Lots of love
Ceri xxx
Hi Bartonman.
It is rarer, but not unheard of that older folk get diagnosed with MS.
I identify with some things you say. Let me tell you how it went for me.
I was suddenly hit by MS symptoms at the age of 45. First symptom was a heavy left leg…followed by foot drop( lots of tripping, stumbling and then bad falls).
Bowel/bladder control became difficult. Mobility worsened and fatigue was through the roof.
Moving on some 22 years and no diagnosis was given, due to lack of proof on many tests. By this time, I’d been a full time wheelchair user, with carers for all personal care needed, for a long time.
Then I got referred to a neuro out of my area and PPMS was finally diagnosed, with specialist testing and expertise.
I’m now 69 and became a born again Christian last year, as I became unable to see a future with things as they were.
Your feeling of being a ‘spare part’ is very clear to me.
Let go of the guilt…accept your condition, once it is diagnosed, and live the best life you can…with the love of your family and know that Jesus is there for you if you call him.
Blessings, Boudsxxxx
Hi there
I am so pleased to hear another Christian on this forum, although I am sure there are probably many out there.
I have had MS now for about 32 years, first RRMS now SPMS. I have been a Christian for over 50 years, and I am sure that my faith has helped me to stay positive over all this time. However, since I have had to use a wheelchair full time, I often feel “useless” because I just can’t do the things I used to do. That having been said, I am both Secretary and Treasurer of my church plus lead a service once a month. I am able to do all that sitting down, and I therefore say that as long as I can do it sitting down, there’s no stopping me. But having said that the fatigue gets to me, so I do have to be careful as I am prone to overdoing it and trying to work through the shakes and the fatigue when I should really rest.
I see a lot of negativity and moaning and I want to say to people, “don’t dwell on what you can’t do anymore, make the most of what you can do”. I am quite sure that a positive attitude, and “I’m not going to be either beaten or defined by my MS” has helped me over the years. Talk to your loved ones - you will probably find that they want to help you and don’t feel you’re a burden - but keep talking and communicating.
God bless
Katie
Thanks for your kind words
Thank you all for your kind words and experience’s, I think I seem to have had all the bad symptoms in the last six months my MRI brain scan was conducted because the hospital thought I had had a TIA but once the neurologist had seen my MRI he said it was suggestive of MS.
Because I had developed spastic Paraparisis,
I was then given a full spinal MRI which showed I had a intadural extramullary sheath tumour between T11&T12 of my spine.
This was incidental to the possible MS diagnosis,
Because my sister has ms.
The neurologist thought that the tumour was unlikely to be causing the spasticity.
I am very very lucky to have the support of my family.
Like many of you I am having to adjust to how I am now I have good days and bad.
It is so good to converse with people who are in the same boat and I take great comfort from your kind words.
Many many thanks
Thanks Rogue,
I am normally quite a positive person and I know I can adjust to what ever life throws at me.
The waiting is the tough part once I know I can deal with it.
Your words are very welcome though.
Many thanks Ceri for those kind words and encouragement, in addition to the Ms I have a tumour between T11 & T12 which is causing additional problems it was the spinal MRI I had that showed this up.
It is nice to converse with people who have similar if not the same symptoms as me.
My sister who is 8 years older than me has RRMS but we are not close and only my wife and two sons are aware of my condition. I am still contemplating whether to contact my sister and tell her.
Anyway thank you once again.
Hi Katie, lovely to meet you. Just been to church and what a great service it was! Gave me so much encouragement to strive against difficult MS issues.
Of course there are many things I can no longer do, but I have a good husband and carers to help me.
I’m still here for God’s service. He helps me give encouraging words to others struggling, with his grace and love.
Much love,
Boudsxx
H again Bartonman, so sorry to learn of your tumour…Praying you get the strength to fight on.
Boudsxxxx
Hi Bouds
Lovely to hear from you too. We were encouraged this morning in church to let the Holy Spirit work in and through our lives.
I’m very sure that the Lord can still use us however disabled we are. The strength that He gives us to cope with things shows His strength in and through us. Like the apostle Paul said “when I am weak, then I am strong. I can do all things through Christ who strengthens me”. It is this inner strength that can never be taken away from us whatever happens and however physically weak we become. And it becomes an example to others. Keep holding onto the Lord and He will help and use you.
Glad to hear you have good support at home.
I have a wonderful daughter who lives with me and happens to be a nurse so my own medic! She doesn’t remember me without MS (diagnosed when she was about 2 and a bit) so has grown up with it and knows exactly how to help me.
Take care and God bless.
Katie x
Thank you so much
HI Katie. Thankyou for your supportive and kind words. Yes, I do believe God wants us to show other disabled people how to find strength in his love.
Wherabouts are you? I am in West Yorkshire.
God bless
Boudsxx