Neurological symptoms?

[Hedgeree]

Hi,

I'm new to the forum; hoping to hear from others having similar issues and any advice welcome.

I seem to be having symptoms associated with Pernicious anaemia but my blood tests have come back normal? I try to get tested every year as my family have the condition and they all have the B12 injections (although some are having tablets at the moment due to Covid-19)

My blood tests have always come back normal but I don't actually know what the results are? My symptoms are breathlessness, continuous tingling in both feet and ankles, a permanent purple stain on the top of my foot which doesn't go away, dizziness and tiredness.

I'm concerned about asking for the results to be explained properly as I don't want to be seen to be challenging the doctor or seen as a trouble maker! I think I'm just looking for reassurance; it is ok to get them explained?

Also has anyone else had a permanent purple skin stain with this condition?

Thank you in advance.

[Xena2202]

My blood counts all came back normal every time and I still had bad neurological symptoms. So I never had any anemia per say, and I don’t know how to explain it but it still felt like I did! I ended up testing positive for the intrinsic factor antibodies is how I knew, didn’t get my b12 tested bc I had been taking sublinguals, but if you got yours make sure to get the results for yourself bc as long as you’re in the “reference range” they won’t bat an eye, even if it’s low. It’s 100% your right to see your test results, it’s your health.

I would ask your doc about the antibody tests too.

[Hedgeree in reply to Xena2202]

Thanks for your reply.

It's difficult when you don't feel right but your test results come back 'normal'. I will contact the doctor again; it's just a challenge with the Covid-19 situation with getting an appointment and not being seen as a time waster.

Many thanks for sharing your experience.

[JanD236]

You’re entitled to be given your blood test results and I suggest you phone your GP surgery to ask the receptionist to post or email your latest results to you.

I ask for a copy of my results any time I have tests carried out and it’s never an issue nor am I seen as a trouble maker so please don’t worry about it, just ask.

Once you have your results you could post them on here (show the result and the range) to see if anyone can help.

I’ve not heard of a purple stain on the feet (but I’m not an expert). However, the rest of your symptoms are similar to my own when I was deficient in B12.

[Hedgeree in reply to JanD236]

Thanks for your response.

Yes I think I will get in contact with the doctor again; as you say I'm entitled to the full results. I think I was slightly stunned when they said they were normal. Once I get them I will post them on here.

Many thanks for taking the time to reply.

[Marz in reply to Hedgeree]

You can ask the Receptionist for copies of your results with ranges - they are legally yours ! You do not need an appointment. Doctors say Normal/Fine/OK when they mean 'in range' - but it is where your result lies in the range that is important. Sadly it is the way medicine has gone - looking at numbers on a screen rather than looking and listening to the patient ... 😷

[Hedgeree in reply to Marz]

Thank you for your response.

Yes it does seem that way; sometimes the patient's experience is almost overlooked when any results are described as normal.

I think also for me it's a confidence thing and don't want to be seen to be challenging the doctor, which as I'm typing it now sounds ridiculous!

As you say the results are legally mine so I'm perfectly entitled to get the full results explained to me.

Thanks for taking the time to reply.

[Marz in reply to Hedgeree]

You can always post results here for comment and support. Requesting YOUR results enables you to monitor your own health and check what has been missed ! You can then do your own research empowering you before your next appointment 🌻

[Nackapan in reply to Hedgeree]

Yes I've had 'normal results s' when very ill and its an odd feeling.

Nothing yo work with.

The only time ive had purple feet was with Raynalds syndrome years ago.

Sometimes bruises hang around on me too now.

Definitely get that checked out.

I've taken photos of patches that appeared on my legs to show Gp at some stage.

Never think you are a time waster.

Ig it was them they would be looking for answers too.

It is their job and they have a duty of care.

TC

[Hedgeree in reply to Nackapan]

Thank you for your reply.

Yes I totally agree, it is an odd feeling. I start to think I must be making it all up; 'blood tests are normal so I must be fine' type of thinking.

I'm starting to feel more confident now in asking for copies of the results and their range.

Thanks again.

[Litatamon]

Hi Hedgeree,

I did have a purplish stain just below my toes. It disappeared with the b12 shots.

[Hedgeree in reply to Litatamon]

Ah ok. Thanks for letting me know.

Any descriptions of symptoms have not mentioned purple stains so I did wonder; mine's on the top of my foot and is about three inches by two inches wide. It temporarily goes away when pressed but has been there for the last six months.

Good to hear that yours went when you had the injections.

Thanks for your response.

[Litatamon in reply to Hedgeree]

Who knows. Time will tell for you, if it is b12 connected. Probably is. Mine went along just under the cracks of my toes, on both feet. I remember being ridiculous and scrubbing thinking my feet were dirty. And then thinking how could I have forgotten that I had hurt both feet.

One forgets so many symptoms. Just the other day my feet were going a bit numb while cycling. And I remembered that my foot would drop from the pedal on a fairly regular basis. And sometimes I would lose a sandal.

The number of symptoms, from head to toe, is unreal.

[Nackapan]

Have you also had a full iron panel. Folate vit d and thyroid tests?

[Hedgeree in reply to Nackapan]

I don't think I had vit d or thyroid tests done but I did have a full iron panel (I think?)

Apologies for being vague but I'm not good with needles, so my focus was on trying not to panic and to get through the blood being taken without passing out!

Thanks for your reply.

[Marz in reply to Hedgeree]

Hopefully when you have copies of your results you will be able to check the tests carried out..

[Hidden]

The Intrinsic factor Antibody [IFAb] test is NOTnotoriously unreliable. It does NOT give lots of false negatives either! It's not specifically a test for PA; it's a test for IFAb. If it was an unreliable test then it would not be in use. When it's negative then that simply means that IF antibodies have not been detected on that occasion, in that sample. It doesn't mean that they won't ever develop. In many auto-immune conditions, the levels of auto-antibodies may vary considerably, and sometimes it may take several attempts over an extended period before any antibody level reaches a point at which it can be detected by a diagnostic procedure. Some patients may never develop detectable IF antibodies but it doesn't stop them having Pernicious Anaemia.

The Schilling Test [more appropriately 'Tests', as there were several parts to it] was very useful, but even then, not infallible. It was not a simple procedure, took a considerable amount of time, and at very considerable expense. It was not suitable for large-scale testing. The IFAb test is however a straightforward test to perform. The fact that it's not a 'One Stop Shop' type of test leading to diagnosis doesn't detract from its value, but diagnosis of PA should be a clinical procedure, and take account of a number of things. A positive IFAb test helps a great deal, but in PA, it's only positive something like 50% of the time.

The other 50% of results are NOT wrong. They're simply negative.

[Hedgeree in reply to Hidden]

Thanks for taking the time to reply.

I don't think I had that test done! Thanks for your thorough explanation.

The only thing I remember the doctor saying to me was they were checking my B12 levels. Even though I was very anxious at the time I have no recollection of an Intrinsic Factor Antibody test being mentioned.

When I ring to ask for the full results I'll ask about it.

Thanks for pointing that out for me.

[Hedgeree]

Thank you for your reply and sharing your experience.

I had advice from the doctor regarding a prescribed pain medication one time for a trapped nerve (I forget what they were); they said I could take them continuously no problem but the pharmacist said no and that they were highly addictive!

So I now always ask the pharmacist when I have any queries about medication.

I hope that your double vision is starting to resolve itself?

I will ask for the full results and I now feel much more comfortable in doing so.

Thanks again.

[Hidden]

What is with doctors and B12 deficiencies? Although I have had the same symptoms for years, my B12 bloods always came back 'normal'. On a visit for blood results about four years ago, my doctor had a Eureka moment and was delighted to tell me that my B12 level was low. I had the series of injections, with no discernible results to my continuing condition, and was given B12 pills and folic acid. Again, no difference whatsoever to my symptoms. Recently I have developed purple toes and numbness in four toes which is now impairing my walking. A recent blood test showed that my folate levels were low. I'm now back on folic acid. I was pleased to hear that others have 'purple foot' syndrome and it's not some manifestation of mine! I had never heard of IF, and did not realise that B12 deficiency can cause long term health problems, so I am very grateful to this group. Where do we go from here Hedgeree, and others who are in the same boat? Post Covid I intend to go back to my GP and discuss my condition and ask for an IF test. I expect I will be fobbed off.

[fbirder in reply to Hidden]

You say that you had a course of injections and they did nothing to help?

There is only one 'gold test' for a B12 deficiency. That's to give the person a course of injections. If they improve then they had a deficiency. If they don't, then they didn't.

[Hedgeree]

Hi and thank you Catkan for taking the time to reply and sharing your experience.

Yes it is a bit of a strange relief to know that others have 'purple foot' syndrome! I don't have any numbness in my toes but do have permanent pins and needles in both feet and ankles and I feel like I'm walking around on sponge!? Sometimes my right thigh has a strange tingling sensation but this comes and goes.

As you say I am also very glad that I joined this group and posted as it is not something I tend to do and I have very little experience of using health forums. The experience here has been very useful and supportive.

I feel much more confident now in contacting my doctors and asking what tests they actually did and for the full range of my results; I will also ask about the IF test.

Good luck Catkan when you go back to discuss your condition with your doctor and thanks again for your response.

Best wishes to all.

[Hidden]

I have an app on my phone ... patient access app, which Gp gives you password for which is great as shows entire medical history and current results. I hear most UK GPs have this service.

[Hedgeree in reply to Hidden]

Yes they do. It is great! I discovered it yesterday so I now have my results!!

When I rang the doctors to ask for them; they emailed me the details to register on Patient Access. I got it sorted last night so it's been a big relief.

To post my results on here, is it best to start a new post or just put them on this thread? Apologies as I don't know the proper terminology?

[Showgem in reply to Hidden]

Mine doesn't give any details or results of tests, only present medications and past and present names of conditions. Should I be able to access more information or do surgeries vary?

[Hedgeree in reply to Showgem]

If you're using Patient Access (once you log in) to the left of the screen there is a heading 'Medical Record' you'll find 'test results' there. Not sure if it differs depending on what region you're in though.

[Showgem]

No on mine there isn't any details there, no test results, just a basic list of conditions I had/have

[Hedgeree in reply to Showgem]

Oh ok. It must differ depending maybe on what your GP practice wants patients to see? I've only just registered yesterday so not experienced with how it all works.

Have you linked your GP practice to it?

[Showgem]

I have, they must differ in what they allow the patient to view.

[cocoa]

At my surgery you have to ask for access to patient record … phone the receptionist … or else there may be details on their website.

I had to sign a form …. it was easy and well worth the bother.