Recently diagnosed.....

Hi Alwayshope - Thank you for the useful information as well as the booklet, interestingly the authors are based at a hospital not a million miles away from me!

The PE was indeed one hell of a shock, especially as I've always been fit, active and the job I (used to!) do involves a lot of physical exercise, heavy lifting etc.

I'm doing a little bit of research myself though as due to, shall we say, a previous line of work, I have a bit of medical knowledge!

Its all kind of rumbling along, but blood tests initially showed a massive lack of vitamin B12 and D, and Pernicious Anaemia. Bit odd as I have a healthy diet, don't drink (due to job) and have never had any problems before. GP referral to Gastro, camera down the throat (one of the most uncomfortable and unpleasant experiences EVER!) where they took biopsies that came back clear. They did find a Hiatus Hernia though, which was a UH-OH moment. Then came then MRI and biopsy for the prostate, again, one hell of a "what the hell" moment.

I was told though if I experienced lower back pain or any odd symptoms to go straight back to A&E, so that was my port of call, lower back MRI later and they find that my lower spine is degenerated, squashing my nerves causing the pain in lower back and leg. 

By this point I'm just a walking talking medical nightmare, and bosh, along comes the PE acting like a schoolground bully who doesn't want to be left out the action!

I do have a appointment with the consultant who originally saw me though, as I have a few grumbles (as do some of the medical staff who saw me after they found the spine being knackered and the PE) as my thoughts are I want to be in control of the situation, not sitting around waiting to "see what happens".

Watch this space, and again, thank you for the information you posted previously.

Cheers.

(PS - Del48, sorry to hear of your situation, but I'm just a bit interested, you say you had 22 biopsies taken, of which 95% were clear?)

I agree mate and if the trials are going well then it should be offered to us when its the first time round but when something is trialed it’s usually another country that takes it in because if the financial cost of it 

Yes I asked the urology nurse who game me my diagnosis over a week ago and she said there were 22 biopsies. The lesion was so small he didn’t think he’d even hit it so I think he got carried away clip clip clip lol. I’m glad he got it and obviously happy that only 5% of the biopsy was cancerous so I’ve been caught really really early. 9mm lesion at the back edge. The doctor doing the biopsy looked disappointed that he wasn’t getting to cut the full prostate out as he was the surgeon that uses the robotic surgery

Hi Del 48. Sorry to ask, but with the fullest of respect, could you start your own thread in regards to your own issues? I feel that my original thread is becoming diluted with your own experiences and thoughts, so my personal journey is becoming a little, disjointed?

Thank you in advance.

Apologies I’m new to this and just thought it was an open forum 

Hello spicyparsnip .

Sorry for the delay in getting back to you but I am currently on holiday (first time in over 4 years due to hubby's medical issues but he was determined to take me away to celebrate my big birthday and has now said more to come as we are having a great time).

I think that most of us carry on in life and think that everything is fine until we are hit with some unexplained medical issues which then make us reassess our lifestyle choices but am glad to hear that you are trying to take ownership of things that you can do for yourself. With the pernicious anaemia and vitamin deficiency it sounds like a malabsorption problem which I presume the gastroenterologist is trying to get to the bottom of things. This can sometimes be due to food intolerance particularly with things like gluten and dairy. I am gluten intolerant and only found this out about 4 years ago so it made me realise just how much gluten is in what most people consider a normal diet e.g. going down to the buffet breakfast whilst we are away the first thing I am confronted with is a whole array of breads, croissants, pastries and cake (no gluten free options). Next are the cereals all of which are wheat based with the exception of corn flakes (which may have a trace of gluten) - no oats. Next comes the Greek yogurt plus fruit (great, I can have this). Cold meats and cheese in the next display (is the cold meat gluten free -they don't know, cheese - be careful because of overloading on dairy) Finally the hot selection (bacon - gluten free, don't know, omelette but filled with cheese and ham so a no no, tomato with cheese topping, fried egg -would have preferred poached, mushrooms). Tea - great,  a herbal and green tea offering. Malabsorption can also happen when the insulin switch needs resetting as I have recently found out and have resolved with intermittent fasting. Lunch - no gluten free sandwich or pasta available so salad the main choice. Evening meal - plenty of fresh fish and vegetables -I'm in my personal heaven.

My husband has a degenerative spine which can also cause sciatica and this has been approached on several fronts. He attended a pain management course which taught him how to use painkillers properly, plus exercise, relaxation techniques and more importantly to learn to pace himself. He also has regular osteopath sessions where he is treated holistically. In addition I have been shown how to use a massage gun on him and he has started to see some benefit from resistance bands - I have to say hubby is now 80 and used to be extremely fit as he was in the special forces so is pretty open to physical exercise which helps but has mobility issues since he had a stroke in 1996.

A positive attitude is great and keep us posted on your journey, plus come back with any questions.