Prof Bruce Appointment

[amy1808]

Well had a very interesting meeting with Prof Bruce . Never had such care and attention such a lovely guy .

Bloods taken by Prof Hay all came back good so no underlying disease as he first thought . He thinks I have bad nerve damaged caused by the vast amount of TIA’s I had before diagnosis of APS . It took 12 months to diagnose APS because of the lack of care in BLACkburn royal 😡. Just glad I’m under one roof now .

Time to change my life and de stress , take up Yoga and chill , he has booked me in for MRI , EEG and nerve test and he and Prof Hay will be looking after me now . So relieved 😅

[HollyHeski Administrator]

Fantastic under one roof and communication between the Profs. Great that further tests are being done, so no stone unturned!

I bet your relieved? Yoga and detressing good idea - big hug xx

[Lure2]

Hi Amy;

CONGRATULATIONS to have had an appointment with a real Specialist who will follow up your symptoms no doubt.

Please tell us of your future adventures!

Kerstin

[charlieab]

Sorry to hear it took so long for your to get diagnosed but glad to hear that you now have doctors who you have confidence in and who sound like they genuinely care.

The de-stressing is important I think and easier to do once you are no longer fighting for a diagnosis. Ive taken up archery which has ben like a kind of meditation. Though not very relaxing for anybody near by.

all the best

R

[KellyInTexas Administrator]

So glad to hear this. I also have had a lot of nerve involvement/ gamage. We usually need slightly higher INR, I think. I’m set 3.8-4.2

Let me know what you discover. I’m still trying to understand this. My optic nerves have been quite damaged. I can post photos of scans if it helps you. ( I keep meaning to.) I guess I’m worried it will bore a large majority of people but I’m afraid people are having damage done without realizing it until it’s too late. I was!

My intestinal nerves can sometimes not communicate to brain, ( paralytic ileus. Methscopolomine bromide helps with this - helps smooth muscle cells communicate with brain- every morning and evening.) This May be cause of your nausea? Clotting into blood supply to nerves, and even micro clots into vascular system of bowels in general. It caused major surguries for me.

I have balance issues- spinal nerve issues- same issue.

My nerve conduction tests were normal, by the way... so I’m not sure about the tests.

MRI always fine.

I have seizures- right temporal lobe. Micro clots. On anti epilepsy drugs.

[amy1808 in reply to KellyInTexas]

Hi kelly

I was on Clomazepan for anxiety and it helped with my symptoms tremendously then they decided to wean me off it as it is addictive . Since then I have gone down hill, don’t get me wrong I still had problems but at least I could function . I’m now on amytriptilyne . It only day two so just have to see how it goes . Extremely tired with them , slept ten hours last night but no tingling 🎉🎉🎉. Say at a time I guess .

I’m like you all the test are coming back clear so just see what these new ones show up xx

[MaryF Administrator]

Well done with your progress to date, and please do make sure your B12 ist tested adequately, great idea with the Yoga, I work out daily for at least one hour. MaryF

[amy1808 in reply to MaryF]

Gosh Mary an hour , wish I had the energy x

[MaryF Administrator in reply to amy1808]

Some days I divide it up into ten minute segments, my energy is better now I sort my B12 out, plus D and also my Thyroid which was missed for years is now medicated... so often missed..... I was not prepared to accept Fibro as a diagnosis, as it is clearly a selection of symptoms which all need treating. MaryF