one thing after another...

[LadyBothwell]

does anyone else with PA seem to have constant small health problems? I seem to lurch from one bug to another, it takes me ages to shake off a cold and as soon as it is gone I get something else, a stye, aching joints, and sometimes everything at once! Im taking various supplements and get 8 weekly b12 injections but I constantly feel run down and fed up.

[15beansoup]

omgosh that's how I started my journey for 20 years till finally I was so flared up. I went to my reg Dr. and told him there was no way a person could have the flu 32 times in a year after several tests he diagnosed me with Fibromyalgia. I had never heard of this before, what's crazy is12 yrs later I was diagnosed with PA. Somedays I am at the end of my rope it has changed me and changed my life I battle 79 conditions now and every day I ask myself Why? Is it worth all this, and do I want to spend the next 20 yrs battling all this? I was told those 12 yrs my B12 was low that I needed a shot, nothing at all was explained to me and I refused the shot because it hurt and I couldn't move my arm for 3 days and felt nothing from the shot. Not once did the Dr. or nurse say anything about the damage that was being done to me. They never said hey this could cause brain damage NOTHING so I thought, it,s no big deal it,s just a vitamin. I was never told or educated on this. My BF knew something was wrong and warned me constantly that something was wrong and was studying Alzheimer's convinced I had it. I thought he was crazy because I couldn't see it. I think everyone should be educated on PA /B12 def I am so sorry I went down some rabbit hole I dk what happened (brain damage)I would contact my Dr. to see what is going on, don't wait it could be almost anything sorry I am not more helpful

[LadyBothwell in reply to 15beansoup]

That sounds awful. So sorry to hear all that you have to put up with. I looked up fibromyalgia and many symptoms are same as PA but thankfully I don't have pain. I've been there with the crazy/dementia feeling. Often find random things in random places and weird text messages from my brain fog days 🤣

[Minnskimoo]

Hi LadyBothwell.

I haven't been diagnosed with PA but I have been diagnosed with Behcet's Disease so I have a number of problems already. That said, three weeks ago, I was referred to a neurologist due to a numb foot and tingling, pins and needles in arms hands and feeling dizzy and unbalanced. Prior to all of this, and my diagnosis I was and still am taking Omeprazole for GERD- apparently lowers B12. I have noticed from my medical records that, over a period of years my B12 has now fallen to a level that could be contributing to some of this tingling and numbness, apart from many other strange and intermittent symptoms- perhaps par for the course with PA/B12 deficiency?

I asked the neurologist his opinion - I was sent for an MRI of the spine and nerve conduction tests to rule out 'other' causes first. Now awaiting results.

In the meantime, I have had numerous respiratory infections, sore mouth and, swollen, frilly tongue, ulcers by the cartload, peeling skin on cheeks, tiny, recurring styes - same place each time, in both eyes ( thought this was due to dry eyes) Muscle aches, pains and so it goes.

I don't know enough about Pernicious Anemia or B12 deficiency but appreciate it can be the cause of many niggles - the list seems rather comprehensive. Have you had any other tests for low vitamins, thyroid problems and your constant tiredness? Maybe every 8 weeks for your B12 shots isn't sufficient for you? Certainly a GP revist wouldn't come amiss in the meantime!

[LadyBothwell in reply to Minnskimoo]

Oh poor you. My thyroid tested normal. I've been to doctor blood test done platelet count slightly raised which she said was due to an infection. Yesterday I reached rock bottom but I guess the only way is up from there. I feel like a hypochondriac and sure the doctor and people at work think that. Today I'm a bit more hopeful even though I've now developed an earache and pain in my side on top of everything else

[Minnskimoo in reply to LadyBothwell]

Oh dear! What a nuisance, just when you begin to feel a tad more hopeful something else comes along to bite you on the bottom! And ...you are definitely not a hypochondriac, although I fully appreciate why you feel this way. Unless the GP and the people at work have experienced the debilitating and numerous symptoms of autoimmune disease for themselves, they will not understand how unwell and low this can make a person. And, I don't know about you, but people say how well I look, considering. That makes me want to scream some days!! I have been prescribed Vitamin D as my score was just 50 - and was informed 'suboptimal' so supplementation given in the form of Adcal D3 tablets. I suppose it depends on the individual GP as to whether they see fit to prescribe.

I can totally relate to you wanting to feel less fed up - at least for a few weeks at a time. Think I would like to be a hedgehog and hibernate now until the spring comes along! I can and do feel 'prickly' at times. Chuckle.

Hoping your ear gets no worse and you manage to get a little time without anything to worry or bother about! It's a job.

x

[Miss-guineapig in reply to Minnskimoo]

I took omeprazole for two years, quite high doses for a separate illness. Anyway the drug killed off the parental cells in my stomach hence I now have PA. I no longer take omeprazole . Wishing you well Minnskimoo xx

[JMN2017]

One of my relatives, who is vegetarian but no PA, always picked up bugs, one after another, until she thought to increase her protein.

She's now no longer picking up bugs all the time and only getting mild forms occasionally.

[LadyBothwell in reply to JMN2017]

That's interesting. In the past I don't think I got enough protein in my diet but last few years I've made a conscious effort. I find many foods difficult to digest especially meat

[Queeniz]

I know how you feel I had 6 chest infections last year I’m beyond fed up & drained ..... etc

I’ve always got mouth ulcers & covered in bruises I look like I’ve been beat up x

[LadyBothwell in reply to Queeniz]

Yes this. I have iron deficiency anaemia too so often get random bruising. And inside my mouth is always sore. I would be so happy if I could just have a week of " normal" 😷

[Foxtrot89]

Have you tested your vitamin D levels?

[LadyBothwell in reply to Foxtrot89]

Yes my vit d was 49.4. Doctor said this was ok 50 is minimum on scale in blood test results. I take a vit d supplement daily and I'm often outside. I thought I read somewhere that vit should be higher for those with PA but GP said no

[JMN2017 in reply to LadyBothwell]

I wouldn't have thought it would do any harm to increase your Vit D levels with stronger supplements.

Being cynical, I wonder if your doctor says 49 is OK because he doesn't want to prescribe you the course of high level Vit D.

Since being discovered to be deficient Vit D and treated with high dose course, I supplement daily with 5,000 iu and an extra 5,000 about 3 times a week which keeps my levels at around mid-range.

I don't know if that's helpful at all

[Foxtrot89 in reply to JMN2017]

I don’t know about you but I don’t want to be scraping the minimum level, I want optimal!

If I were you I know I’d try and get the levels higher since you’re frequently getting ill. I know myself that I feel bad when my levels go under around 65-70nmol and feel better closer to 100.

[Miss-guineapig]

You are having such a very hard time. There are a lot of knowledgeable people on this site, I'm sure you will get good advice. Wishing you well, big hugs xx