Advice please from fellow suffers.

[Jillymo]

I have been having B12 injections for nearly 18months and due to failing the battle with my Dr to have them more frequently beause of my ongoing symptoms I am now self injecting.

I am waiting to be see by a neurologist which could take monthsto be seen and most certainly wont be this side of Christmas !

In September this year my Dr requested both a MMA and Homocysteine test but neither have taken place. I am in the throws of emailing her but need advice -

Is there any point in me mentioning these tests which have not been carried out so long after treatment has started ? ? ?

I am on Lansoprazole and suffer with non - errosive gastritis. Should I be seen by a gastrologist and request that a Methylmalonic Acid Test ?

My low B12 was spotted in June last year. Prior to this my hematologist who treats my Sticky Blood condition ( Antiphospholipid Syndrome ) prescribed me folic acid. Seeing as I am no further forward in getting a diagnosis and have been on folic acid for some time is there any point in looking for enlarged blood cells ?

Any advice would be welcome.

[Nackapan]

I woujd get as many of the tests done as possible .I'm 3 yesrs instill don't have a reason or formal diagnosis.

Have seen 3 neurologists that ruled things out but all had different theories on what was going on.

All offering drugs .

I had 2 brain mri scans abd a brain ct.

The mma and homocysteine eoujd I imagine still be useful to have.

Regular full bloods are done

I think it's a matter if ruling things out when tfyingbyo find out what's going on.

I've many things ruled out.

Haematologist are mentioned in all treatment pathways

I've not been referred,??

Reports on here mixed at how helpful they csn be.

Most specialists freak at high frequency b12 injections and dont serm to move on.

Just get what you can. 🤷

If under a haematologist already they shoujd advusd on what bloods to do.

Good job low b12 was spotted.

How often are you injecting b12?

What regime did the NHS offer?

[Jillymo in reply to Nackapan]

You would have thought the hematologist in London would have spotted something was wrong when she prescribed folic acid.

I have a brain scan this Friday but that is ti do with my blood condition and small vessel problems. Before treatment do you remember getting a dull pain in you right temple ?

I have so many autoimmune health issues aswell as fibromyalgia so they tend to blame everything on the fibro. I hate neurologists I have always found they dont listen or look at the clinical symptoms. Did you not get a referal to a gastrologist ?

The Dr gave me a loading dose then three monthly injections. I was still very poorly and battled to get them two monthly but I still had awful symptoms. My Dr wouldn't even consider giving them more frequently so I started self injecting. I gave myself another loading dose and have been injecting every otherday which has helped with both balance, mood, numbness in my feet and stinging and burning. I was feeling seriously suicidal.

If only they new how awful this illness is and how we struggle to get through the day.

[Nackapan in reply to Jillymo]

I know how disibilitating itis.To answer your question about a dull pain in my temple before treatment I'm really not sure. I was having headaches and falls and vision difficulties and fatigue .

I did get numbness acrosss my face and numb nose. Stlli do at times.

In the months I was on every other day j was having migraines. Seemingly different sorts.

Vestibular 0nes ect.

My head had so many pains that included tight eye sockets

Tight Skull.

Tinnitus.

I don't have any other known problems.

So j imagine it is connected for you.

My daughter was mis diagnosed with fibromyalgia ax s generic term fir a group of symptons if nothing else's found.

The symptom scoverlap with so many things

Although she was severely folate deficient . Had megobalastic anaemia

Ferritin low vit d low b12 very low .

I think undiagnosed b12 deficiency for years presented as other things.

Autonomic function

Connective tissue issues

Pots and HEDs

Thsts what I meant by getting every test possible

Took yesrs to wade through specialists until one took an interest and started to put tgd jigsaw together.

Even if your brain scan is for another problem surely it's looked af fir everything?

No I've never Bern referred to gastroenterology

I've pushed to see ENT again as initially refused by a Gp.

3 yesrs on still with a vestibular disturbance.

Disappointed ad havd an 'initial 'telephone consultation saying it voujd be 4 hours either side if yinr given!!

I cant use a landline

Havd only recently managed tge loudspeaker on a mobile

Even that can set off awful tinnitus abc gives head pdkbs sbc j tgr if try stagger walk.

Also i csn get echoes/ delays when speaking some of the time .

So i feel it will be limited but csng ring to explain that!!!

Will see how it goes.

As soon cant be bothered getting someone to ring on mh behalf ax it will be a receptionist .

Glad every other dsy b12 helping you.

You've alot going on .

Hope you find a way forward soon.

[Jillymo in reply to Nackapan]

I can relate to most of what you are describing and sympathise with the misery of it all.

The tinnitus which is worse at night drives me to distraction.

I found I were unable to do the simplest of things and felt as everything I did was in slow motion.

Be careful that they dont label you with functional overlay which seems to be the new trend for we havn't a clue what is wrong with you- its a bit like being labeled with fibromyalgia where they look no further and basically right you off.

That's the trouble I do have a lot going on - I feel like I am a part in all these diffent departments with them all looking at there own little bit instead of the whole picture, it makes me so cross.

[clivealive Forum Support]

Hi Jillymo what strength of folic acid are to taking?

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Personally I have taken 400mcg of folic acid every day for as long as I can remember but then I've been having B12 injections for P.A for nearly fifty years.

Please note I am not a medically trained person .

I wish you well.

[Jillymo in reply to clivealive]

Hello Clive,

I take 800mcg daily prescribed by my hematologist.

I have had all of the symptoms you listed which are slowly but gradually easing off since I starting the B12 injections ! The numbness in the feet together with the pricking and burning is dreadful - I shall say no more. 😱

I have some very serious autoimmune condition that often lay me low but the B12 and folate put me totally out of action. The only good thing to come out of it since self medicating is that I am loosing weight. 🤸

I suffer with APs ( sticky clooting blood ) and would have thought my hematologist ould have picked up on my decline. My next appointment is in February and she always does loads of bloods so it will be interesting to see what she picks up on. 💉

Thank you for explaining to how Folic, Iron and B12 are linked and the impact they have on our blood cells. 50 years is a long time to have been medicating ! Your a young pup just like myself. 🐶

Keep well and keep smiling.