Myelin sheath

[Alfabeta]

Hi All

I was diagnosed over three years ago and read this site daily. I do not have the most commonly mentioned features of PA hence I assume I do not have it (yet).

From my extensive reading, I come across the damage to the myelin sheath which I understand coats the nerve endings throughout the body. Hence, as with my symptoms, damage can occur anywhere within the nervous system!

The problem I have with my doctor(s) , is there immediate assumption that b12 deficiency is synonymous with PA which, in my case, it is not.

I also read the b12 site daily which is a far less sophisticated site to this one. The list of symptoms cited on this site are almost infinite and fully endorse my recurring symptoms. When I try to discuss my symptoms with doctors I see them stare with incredulity.

It is a very lonely place medically being b12 deficient with damage to the myelin sheath and, potentially, very dangerous as Doctors, including neurologists , immediately want to go down the route of mental illness (at least the ones I have spoken to do).

Even on this site, it has been stated that b12 deficiency and PA are one and the same thing with identical symptoms which, from my experience, is just not true. I have read posts which relate similar symptoms to mine and the writer thinks they have PA but their symptoms are not typical of PA.

Damage to the nervous system due to b12 deficiency is a condition in its own right which may or may not lead to PA - getting doctors to understand this is nigh on impossible in my experience. GPs cannot be expected to know everything but I find neurologists totally ignorant of the condition which is why one reads so many blogs on here where, for years in some cases, people have been diagnosed incorrectly very often with ME which many doctors consider to be a psychological illness as opposed in many cases to be b12 deficiency related.

As I said above, B12 deficiency is a lonely place!

[fbirder]

The symptoms of PA are mainly those of a B12 deficiency. That's because PA is one of the possible causes of a B12 deficiency. PA sufferers may also suffer symptoms caused by a lack of stomach acid (achlorhydria) that would not be present in those suffering from a B12 deficiency not caused by PA.

People's symptoms can be many and varied. Just because somebody with PA has different symptoms from you doesn't mean you don't also have it. If you have an unexplained B12 deficiency - with no obvious cause - then it is most likely that you do have PA. There is no test that can prove you do not have it. As the BCSH put it -

Patients negative for IFAB, with no other causes of

deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia.

You say you do not have "the most commonly mentioned features of PA". But those most commonly mentioned features are, with the exception of gut-related problems, the same as the most commonly mentioned features of a B12 deficiency.

"Damage to the nervous system due to b12 deficiency is a condition in its own right which may or may not lead to PA". I think you've got this the wrong way round. Nervous system damage doesn't lead to PA. Nervous system damage is a symptom of a B12 deficiency that can be caused by PA. The causal relationship is one-way.

If there is damage to the myelin sheath of anything but the peripheral nerves then a neurologist will be able to spot such damage. Either through various physical symptoms or through nerve conduction studies.

[Alfabeta in reply to fbirder]

Thank you for your response. In a previous response I believe you said that PA begins in the feet. Almost every blog on here relates to problems with legs and feet and peripheral nerves.

On the NHS site, before they changed it last year separated b12, b9 and PA with three different sets of symptoms. I have b12 deficiency which has caused damage to my myelin sheath. My symptoms are not the same as any other symptoms that are related to PA.

B12 deficiency is a condition all on its own although it can and often is caused by the bodies inability to absorb it. In my case that is not the case.

[fbirder in reply to Alfabeta]

In the past I have said that the peripheral neuropathy associated with B12 starts in the feet. I was wrong. It can start in the feet. It can start in the hands. It can start in both at the same time. It can start elsewhere. I assumed that my neuropathy was the same as B12 neuropathy. It isn’t.

A B12 deficiency can case problems with the myelin sheaths of nerves. PA causes a B12 deficiency. So the symptoms of a B12 deficiency are a subset of those of PA. There are no symptoms of a B12 deficiency that are not also found in PA.

How do you know that your B12 deficiency isn’t caused by an absorption problem?

[Alfabeta in reply to fbirder]

I don’t know but I suspect it. I am a vegetarian and near to vegan and my doctor proscribed Omaprezole on a recurring six monthly prescription and I took it for six years. Prior to that some years before I was also put on Omaprezole- obviously I have a long history of acid reflux.

I had many symptoms prior to diagnosis but my recurring symptom is/was

1 going into a semi conscious state

2 tinnitus like poor radio reception

3 auditory hallucinations

4 mental confusion.

1-3 lasted no more than ten seconds

The confusion was critical for several minutes - I could identify words spoken or written but could no process their meanings.

The tinnitus ceased after about 18 months and the auditory hallucinations about 36 months. Now I just become semi conscious which lasts for around 5 seconds then recover although the confusion elementbiscthevsame.

These symptoms tend to occur in week six/seven after my injection- I get about 6/8 events on day one then over a five/seven day period they gradually decline.

Sometimes I get the odd event just before my injection sometimes afterwards.

This cycle, I had my injection on the 15th now into the third week the symptoms 1 and 4 have recurred for two days with around seven eventscyesterday and five so far today.

In the last cycle, the events occurred at the end of week five but had intermediate daysxrather than sequential.

I assume this means my condition is improving but who knows?

I have a standard 12 week injection take b12 in tablet and oral spray.