Following on from post a few weeks ago if anyone can remember?
My frosty endocrinologist who I did a post about some weeks ago, actually wrote quite a good letter to my GP (I got a copy) suggesting that it might be worth trying me with hydroxy injections or consulting with the haematology dept for advice or refer me to them. It was quite a positive letter and I do know my GP has written to the haematology dept for advice. So just maybe something may happen!!
I was quite honest with the endocrinologist in that I had tried several self injections and had felt some improvement. This she has related back to my GP, which I am glad about. I only know what's going on because I ring up and ask and they are generally very helpful at the practice. Maybe also helped because my optician wrote to my GP recently requesting a referral to Opthalmology because my eyesight in left eye (and hearing left ear) is deteriorating rapidly. Not good!
So I will keep plugging away and will post the outcome when I hear back from my GP.
I've also submitted updates for my medical records with details of allergies, intolerances, & that I'm a vegetarian. Vegetarian partly because I couldn't myself kill to eat but also because I can't digest meat / poultry anymore plus lots more foods. All have been added to my record apart from being vegetarian! My nutrition I know is very poor because of quite long standing acid reflux / digestion problems.
heyho onwards and upwards.
sallyb
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Sallybones
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I do remember your post, and that's very encouraging news Sallybones.
Do you have a provisional diagnosis for your sight problem? I ask because I have problems with my vision, which can respond positively to a large methyl injection, though not always.
hya Hillwoman. No provisional diagnosis yet but see Opthalmologist next week. All my severe physical problems are on left side of body and I first mentioned left eye problems some years back to everyone I saw!! Usual reply was it looks all right. It's also side of my once severe migraines. But this year I see wavy lines and not full vision and it's very tired. I did pay for scan at private opticians £30 and it showed several circles, which shouldn't be there and field test showed up some more things. I was once referred by Specsavers to GP/opthalmology because they suspected Wet Macular. But consultant said it wasn't.
I'm hoping it is all related to B12 and not something that is irreversible!!
Your sight problem sounds similar to my own in some respects, especially the distortion. One of my sight problems is very slow accommodation, which means all kinds of activities become very difficult. Perception of the colour red is now duller in my left eye. I have become short-sighted too, but apparently not in a way that shows up in an eye exam. Figure that one out!
I paid for one of those scans too. The optician said there were some spots/holes in the wider field scan, but she said "I think that's just you". I have a family history of glaucoma.
Edited to say that I cannot persuade anyone to take an interest in my vision.
That is just awful, Hillwoman, that you can't get anyone to take your eye problems seriously. I hate hearing that. After a lifetime of eye issues, I know how disconcerting it is to have something wrong with the eyes.
Keep up with the methyl-the fact that your eyes have responded positively to it means it's doing something good!
Really hope you have much improvement in the future. Xx
Thank you once again for your kind thoughts Nancyndodge . How is the uveitis at the moment? It sounds like a very uncomfortable eye condition.
Edited to say, I've just read your comments below, and clearly uveitis is very unpleasant!
In my experience opticians really don't like dealing with unusual problems. They know where to refer you if you have signs of diabetic retinopathy, just for example, but they tend to be dismissive of the stranger signs of neurological disorders. I think visual problems relating to PA are probably under-reported anyway, so I hope Sallybones gets further than I have.
Hi Hillwoman, Thank You for your kind reply. I so appreciate it.
Uveitis can be a real pain in the eye! It is painful and besides glaucoma, the steroid drops cause cataracts, so I had cataract surgery in my 40's, both eyes. I'm just thankful I have any sight at all!
I was legally blind in one eye and functionally blind in the other for 10 years.
I am so lucky and have a great ophthal-mologist now. Can your optometrist refer you to an ophthal-mologist?
They would know way more about eye problems. I hope so. Be a squeaky wheel and see if you can get a referral! xx
Squeaky wheel or, as many doctors who have met me would concur, a pain in the a**e! I must explore the ophthalmologist route.
My goodness, what an experience you've had with your sight. That would have reduced me to a gibbering wreck. I'm glad your vision is more settled now, even though it isn't problem-free.
The fact that I trust my ophthalmologist totally helps me to stay calm about it. I wasn't always calm !
But since I feel that I am in good hands and now with years of experience under my belt, I manage much better these days.
I really, really hope you get to an ophthalmologist as they deal with diseases and other problems with the eye. They are the heavy hitters of the eye field. oh, was that a really bad pun? Clivealive would know!
Hello Sallybones. Yes, I remember your posts 😀. Just wanted to say...really good to hear that something positive is happening! Perseverance paying off, at last. But what a shame it always takes so much effort.
Will keep fingers crossed for same result with eye and ear problems.
It's always good to get an update (especially when it's good news) so please keep 'em coming.
Regarding your not being able to digest meat--Have you ever thought that might be because you have low stomach acid? PA patients have low stomach acid. (Gastroenterologist told me) Yes you may get acid reflux because of low stomach acid. The sphincter that keeps tight shut in the presence of high stomach acid , doesn't get the message to do so when the acid is low,so then you get the reflux. Meat is the hardest food to digest because it needs a lot of acid, as well as Intrinsic factor for absorption ,and meat has the greatest amount of B12 . But you do need stomach acid to absorb the vitamins and minerals in other food as well.
Some people who have low stomach acid use hydrochloric acid with pepsin capsules( Google this treatment) Also drinks of organic raw cider vinegar with mother--diluted of course. Low stomach acid leads to tummy problems because the stomach flora is disturbed . To counteract this a good probiotic is needed. There are many to choose from. Best of all have a portion of raw organic unpasteurised sauerkraut everyday.(health food shop, or you can make your own)
I really admire your perseverance! Jeez, what will it take for these doctors to just give you the damn injections?? Sorry, I had to rant a little there.
I have and have had since I was 15, uveitis in both eyes; it's an autoimmune disease that causes inflammation of the inner eye with many attendent complications. I didn't became B12d until 2011 as best I can figure, so it's not caused by that. However I started getting ocular migraines and had a weird thing happen after I became B12d.
When I bent over to pick something up or to mop up a spill and was in that position for more than 30 second, my pupil in the right eye would dilate! Only the one eye, not both. It made me feel unbalanced and almost sick. My ophthalmologist sent me to a Neuro ophthalmologist who didn't have a clue. Since having the B12 injections, that went away totally! Also, because if the inflammation I have to constantly use steroid drops in my eye which causes secondary glaucoma for which I take medicine. Even then if I have a bad flare and have to use a lot of drops my pressure can climb. But since I've been on injections, the b12 has even helped to keep the pressure down. I told my eye doc about the B12 and he seemed impressed. Hopefully he'll use the info to help other patients.
And my ocular migraines completely stopped.
Long story to tell you that in my opinion, B12 could quite possibly help your eyes.
I sincerely hope they'll start you on injections soon! xx
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xx 
My gp saga (update)
Hosp letter
It wasn't my GP.....
Response to my letter to GP regarding my b12 injections. 
