Like quite a few new members I have waited a couple of months before my first post.
After a journey of 2 years, multiple blood tests, lumbar puncture, x rays, CT, MRI, PET, DAT scans and a biopsy I was diagnosed with ECD in April this year. I first went to the doctor with slurred speech, and was referred to a Neurologist. I noticed my fitness was also on the decline along with fatigue. I have also been diagnosed with Cerebellar Ataxia. This is secondary to ECD.
At 51 I am in the process of Medical Retirement from the fire service. This was never a club I thought I would be joining. Luckily I had a private Critical Illness insurance policy payout. Like many other members on here I find it frustrating and annoying that only a few people take this very seriously. Iām sure my work thought I was playing the system because I look āOKā. The best way I find to describe myself is, If I was a car on the outside the bodywork is ok, turn the ignition on and the dashboard will light up like a Christmas Tree!! This is an extremely rare blood cancer with no cure. 1-10,000,000 people diagnosed. I am due to start treatment very soon. We have a holiday to Greece next week and my consultant is happy to wait until I return.
Hi @Gary, welcome, I am glad that you have posted on here.
I picture you as gleaming Porsche Panamera, I am probably more an original mini myself !!
Gosh you have had nearly every medical check there is.
It must have been a real double whammy of shocks for you to be diagnosed with 2 very rare conditions and at such a young age.
Yes, I think we all agree that hidden conditions do not get the recognition that an arm in a fluorescent coloured plaster cast does. Donāt get me started on my pet hate which is when people say āoh, you do look wellā when I am feeling so rough inside.
Please let us know how the holiday in Greece goes, a lovely time of year for a break.
Also how the Medical Retirement progresses.
Then we are here for you to say how it really is for you during your treatment.
Keep posting
Hello Erica, thanks It seems our pet hates are the same! Iāve had enough of people saying āyeah, I do that as wellā
Iām due to start on Dabrafenib and Trametinib when I return
Hi @Gary I donāt think anyone can understand what fatigue is like unless they live with it. Have an absolutely wonderful time in Greece and we hope to hear from you on your return.
Buongiorno a mia madre e stata diagnosticata edc ā¦problema principale gambe e piedi dolori feroci. Come cura Vemurafenib! Ora dobbiamo recuperarlo e iniziare la terapia. Voi come la curate? Grazie
I have translated your message via google, it is telling me the language is Italian - I hope this is correct. I am not sure if you live in Italy though.
This Italian organisation AIL, may be able to help you: [Blood Cancer Support - Italy] (AIL-FIL patientsā group - Italian Lymphoma Foundation). Hopefully they are able to support you and your Mother, and give you the information and advice you need.
It seems our pet hates are the same! Iāve had enough of people saying āyeah, I do that as wellā
