Long term undiagnosed illness

Whiff what an incredibly story of despair and hope, deep sadness and success. I hope you really enjoy the rest of your life.

I am absolutely with you on how medecine has com eone in the last 50 years, especially in the anlysis of rare genetic illnesses.

One of our friends was dogged with a condtion that no one could properly diagnose. By the time it was realised that he had an uncommon genetic condtion, he had the associated cancer that killed him, but both his children were then genetically screened and one was found to have the same genetic abnormality as their father, and they are now monitored and checked regularly, so that any symptoms can bed treated immediately and they do not suffer as their father did.

But for you, and in memory of your late husband [flowers}

My goodness Whiff what you’ve been through!! I admire your stoicism, gratitude for your DH, and advice for others.

Whiff, I am also in the north west and eventually had an unusual lung condition (NTM) diagnosed and treated. My GPs had just kept increasing my asthma medication until I did some research and found which one of them had an interest in respiratory problems. I made an appointment with her and said 'I am ill and am losing weight without trying'.
She looked up from her computer and made an appointment for a CT scan.
All hell broke loose then and I was tested for lots of things.
I remember that you saved us having to pay VAT on our new bathroom because I have a disability. I hadn't known about that and am still grateful.

That is a long time! I am so glad you got there in the end.

Are you in NW England? If so I'm thinking you will be under care of one of the Walton Centre neurologists? The Walton Centre is amazing...such a Centre of excellence...lucky to have it on my doorstep

I am in awe of you ladies' fortitude. Thank you so much for sharing. Totally heartwarming and inspiring.

Wow Whiff that's amazing you finally know what it is! Great to have some happy news for a change.

I admire you very much Whiff. Such positivity. Thanks for sharing. Carry on living life to the full.

It is heartening to hear your positive news, after such a lengthy and difficult time, Whiff.
I hope you continue to keep well. ?

In my late fifties, after 35 years of chronic lung problems, resulting in hospilisations, the hereditary cause was discovered through genetic testing of my son, for a completely different health issue.
It had never been picked up, in the multiple tests, I had done. It was a shock, but such a relief to find a reason.

I can empathise with how you feel and can only marvel at how much genetic testing has moved on from its early days.

You must be so relieved Whiff, literally just knowing what exactly is wrong with you is half the battle. I am so pleased you have received good service from the NHS, I have recently had my faith restored in the North West NHS after nearly dying through a medical blunder, there are certain departments that excel. Take care ?

Thank you all for your words and experiences. And yes I am under the care of the Walton Centre. Health care up here is amazing.

Liz that was some time ago. Glad I helped.

Life is for living and we have to live it to the full no matter what life throws at us. We are born we die. But we have a lot of living to do between those times. No what's if's. ❤️ To you all.

So happy for you

Crumbs Whiff I won’t even try to understand what you’ve been through, but your relief from that knowledge and your treatment to stop seizures is palpable.
It’s amazing the research that’s going on in the background, we’re mostly blissfully unaware until it touches us.
Thank you for sharing and here’s to you ??.

Whiff thank you for sharing your story and for the miracles of genetic testing and your eventual diagnosis and treatment.

The research being carried out and still being done on illnesses, hereditary conditions and new treatments brings hope to so many.

Wow Whiff what an inspirational post, what an inspirational YOU, thank you so very much for sharing this with us all.

There is positiveness there, there is inspiration there and there is hope....

Thank you

Whiff and Liz, thank you for sharing your stories and your courage. I’m pleased things have improved for both of you.

Pleased to hear that you have had a diagnosis and the support that you need. You are an inspiration.

Thank you all for your kind words. Luckily I have found a support group on Facebook with people with the same illness . Not just in this country.

When my husband was told he was terminal and given 4 months to 2 years. We knew it was months. He was a very wise man and knew what I needed to live without him and made me promise a lot of things which I have kept as they are important to me. But the main one was live the best life you can. That's what we all must do. We are born we die and it's up to us to make the most of the time in between. Covid was a wake up call to a lot of people. It's here to stay and like any virus will continue to mutate.

I am an atheist but the only saying I can think of to cover how I feel is count your blessings. I feel lucky I wake each morning with a day of possibilities ahead of me.

Take care everyone and stay strong ?

Whiff, thank you for your inspiring story. I am so pleased for you that a neurologist finally got the right diagnosis. How shocking it is that if your disability doesn't have a name, you can't claim a benefit. I assume that this injustice has been rectified for you, if not for other people who have an un-named disability. Your post has made me give myself a good talking-to!

Watch this space, then.
I've been really, really poorly for 2 years now.
I have just applied for pip on the basis of "he said" and "under investigation".
No definitive diagnosis, just the results of whatever it is that is attacking my body...

Thank you Whiff for taking the time to write your inspiring story.

Very happy for you.

My daughter filled in the PIP forms yesterday for me. And I have photocopied it all along with all letters to do with it from over the years Hopefully I will finally get some payment . As got turned down years ago when my husband was alive and we had to go too a tribunal they treated use like we where criminals and I was telling lies. Pity they can't back date it for all those years.

MissAdventure hope you get your PIP.

The system hasn't changed much then, whiff, in terms of their treatment of people who dare to apply.

I certainly hope you get yours, after all those years.