wegener's Granulomatosis, Acromegaly and Parkinsons and Diabetes and Osteoarthritis

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My Mum is very very ill.

She has a multitude of rare and progressive illnesses.

She has been through so much and I know we have a bumpy road ahead with her recent diagnosis of Wegener's Granulomatosis.

I'm reaching out to see if Globally anyone else shares the same multitude of conditions and can be an ear to listen and a voice to advise.

Here is the story (the short version)

Life has become a fierce storm again and it's a scary time for me and the family.

Mum was diagnosed in 2009/2010 with Acromegaly which she had , had for 10-15 years which had gone undiagnosed. After a frustrating and upsetting 11 months + of waiting for an operation (way over the WAG guidelines for waiting times with UHW) Fighting NHS Wales with over 17 cases of negligence Mum had the pituiatry brain tumour removed. This was 2 weeks before we lost my father to advanced prostate cancer. Mum was his main carer at this time despite being incredibly ill and with little support outside of family. 24 cases of negligence on Dads.

Then mum went downhill again. We couldn't get anywhere with the NHS 7 consultants not communicating or listening left Mum unable to hold her grand kids or dress herself. We pad privately and she was then diagnosed within less than 20 minutes with Parkinsons.

After a timeframe I can't recall she then got diagnosed with osteoarthritis.

Which exasperated her conditions.

The diabetes came via the acromegaly and after the pituatry tumour was removed was under control and nearly negligable.

Just before Christmas 2016 Mum had a bought of flu like symptoms after 5 sets of antibiotics didn't shift it. GPs wee terribly rude AGAIN one minute making my Mum feel like a hypochondriac then telling her not to go to her drs as her conditions are too complex.

Mum then finally saw a good doctor who rushed Mum into UHW for scans. They found a shadow on her lung and told her it was expected lung cancer. My Mum who has never smoked and hates smoking was distraught. They even gave her a by title "lung cancer nurse!!!" who rang and asked my mum whether she was having chemo or radiotherapy to try and treat the lung cancer (THERE ARE NO WORDS)

After Pet scans and a multitude of scans, tests and lots of hospital appointments. She was then given an appointment in Llandough Hospital where we were told it isn't cancer, it isn't lung cancer it's a rare condition called Wegners.

BIG RELIEF

Then.... given a course of prednisone now down to 30mg ontop of all her other meds which has left Mum with mania, insomnia , irrational behaviour and huge upset.

This is where we currently are at.

We get blood test results on the what would have been my Dads birthday next week, then she starts IV treatment 3 days after on her birthday a course of cyclophosphamide (CyP).

She has been through so so much.

We are all supporting her fully.

However I and everyone is very scared of the bumpy road ahead.

Our experience of NHS Wales is less than positive with over 32 complaint emails I have sent to date. Which would appaul most people with the treatment my parents have received.

My Mum will not sue, neither will she go private. She said that her and Dad worked hard all their lives and deserve NHS support. She also said she's been through so much that she could not face another battle. Neither would she ever want to take anything away from the NHS when so many patients need it. 

I apologise for venting. Sometimes you start typing and the words flow too quickly. My main priority , my only priority is making Mum better and looking after her now Dad isn't here.

If anyone knows of anyone in the world with all these conditions or can help.

I would be eternally grateful for any advice, support or outreach. 

 

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7 Replies

  • Posted

    I forgot to add her current meds are :

    octreotide injections every 4 weeks

    Sandostatin 10 mg

    Sinemet Plus (Parkinsons 1 x 25mg 1 x 100mg 4 a day)

    Rotigotine (Neupro) 4 mg 24 hour patch

    Rasagiline 1mg tablet slow release Parkinsons

    Metformin 500mg tablets 2 a day (diabetes)

    Gliclazide 40 mg (Diabetes)

    Amlodipine 10 mg (blood pressure)

    Ramipril (Altace) is an ACE inhibitor 10 mg

    Omeprazole (Prilosec, Zegerid) 20mg

    Predisone 30mg 6 x 5 mg

    Starts cyclophosphamide (CyP) low dose chemo for Wegners next week

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    • Posted

      Hi Sarah,

      Firstly, my prayers are with you and your mum at this time. It's never easy dealing with medical illnesses.

      I am a 44 yr old male living in Trinidad, W.I. And only diagnosed last week confirmed by a lung biopsy - after 6 months of seeing a plethora of doctors, tests and scans. I can only imagine how hard it is for your mom at this time having to deal with the treatments etc. and the related side effects. The diagnosis was confirmed for me by the Path. Lab in the university of Miami, our local specialist (ENT, Thoracic surgeon, Nephrologist, Pulmonolgist) were all in agreement to seek outside assistance in the diagnosis since this is never an easy diagnosis to make.

      Once Wegners was diagnosed they did advise that a Rheumatologist is the one to manage the condition though depending on the symptoms etc other specialist will be necessary.

      In my readings, when on Cyclophoshamide (or any chemo agents) it's really important to manage infections so be sure to use facial masks (when necessary), hand washing, use of sanitizers and keep safe distances from people with infections as the body is prone to developing infections when on these drugs.

      I do hope all goes well, continue to give your mom the support she needs and does waste your energy on any unsupportive doctors - put all your energy to good and productive use.

      Regards

      Ferose

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  • Posted

    Heoo Sarah,

    What an awful time your Mum and your family are having. I was diagnosed with Wegeners (now called Granulomatosis with Polyangiitus) in 1999 after trapsing round Doctors for a year.

    Right, your mum MUST be under the care of a Rheumatologist who has experience of Vasculitis (it's what your Mum has) The Prednisolone will harm her bones - my spine collapsed so she needs to be tapered off them. I know it's not near but the UK centre of excellence for Vasculitis is at Addenbrookes Hospital in Cambridge. Dr David Jayne there knows more about your Mum's condition than any one on the planet. Or, logistics may mean searching for someone in Wales. Contact Vasculitis UK , they may know someone. It's a horrible disease so I wish you all the very best. Let us know how you get on. Best, Dave

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  • Posted

    Hi Sarah

    I agree with Dave.  Your mum needs to be seen by a Rheumatologist.  Once the Wegeners is under control she should start to feel better.  Please be sure she is taking vitamins especially the ones for her bones.  My son takes an antacid and a prescription for the bones.  When you see the Rheumatologist take all her meds with you along with a list of her specialists with their phone numbers.  Write down what is said, like keeping a journal.  Also, write your questions down to ask the Doctors so you don't forget.   Good Luck

     

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  • Posted

    Hi Sarah,

    I too have been through the mill with this debillitating disease over the last 12 years.  It took me 81/2 years, 3 hospitals and 12 doctors to finally get the diagnosis which the first doctor said that it could be.  This was because I fell between the cracks with blood tests, biopsies etc and nobody could prove it.  I finally found Dr David D'Cruz at St Thomas's Hospital in London who said that I definitely had it but the next problem was that when I have had a flare-up it takes at least 2 months to see him in which time the flare-up has died down. 

    I too made complaints to my local hospital over my treatment (usually by nurses and care assisstants) but never got anywhere as it was always whitewashed over.  I too take a large amount of meds to keep my symptoms at bay and also because I got diabetes through taking prednisolone.  I am now on Metformin and Insulin twice a day to combat this.  I have just had a slight flare with symptoms of temporal artritis which because of the prednisolone made my diabetes worse so you can see that it is a viscious circle.

    I hope that your mum will begin to feel better soon and it must have been even worse losing your father at the same time.  Tell her that thingsa do get better and you just have to take each day at a time.  I read when I first got it that when you have a good day then you do what you can and on a bad day you do nothing.  Tell her not to overdo things as this will make things worse.  Take care and if I can help any further then please don't hesitate to get on touch.

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  • Posted

    Hi Sarah

    I tried to send you the email address of the sec to a Rheumatologist who specialises in Wegeners and is based in Wales. (Private & NHS) However, moderator has suppressed my message. So suggest you go to Google and type in. :-

    Wegeners+ Wales+ secretary and you will find the info you need.Good luck, Dave

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  • Posted

    I'm so sorry you have had to put up with misdiagnosing and doctor's that just don't care. I too, had that problem. Tell your mother that i'm so sorry for her. I have Wegener's, diabetes and RH. I have diabetes 2 from taking so much predisone over the years. I had catarect surgary in both eyes before I turned 50 because of the predisone. I too, have non-alcoholic fatty liver disease. I wish I could do something  to help you. Please keep posting so I know how she does.

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