Update, still no firm diagnosis

[AmyG6500]

Hi folks, I haven't been on here for a while but thought I'd write an update.

I have been on alternate day B12 injections (SI) since May. The only symptom that has improved is the diarrhea. I did reduce SI to once a week and the diarrhea came back. The private doc says keep going with alternate days a bit longer and then reduce more gradually, 2 a week for a month etc.

In the meantime I have been signed off work with CFS and started the horrible process of applying for ESA benefit.

I saw a different GP last week and he was very thorough. He knows I'm SI and is happy for me to continue. He has referred me to neurology to check for MS. It will be late October before I'm seen but at least someone is taking me seriously.

So I still don't know what I have but with a family history of PA and some slight improvement I'll keep going with the B12 injections for now.

[Gambit62 Administrator]

Really good you have such supportive GPs.

B12 can help with treatment of MS in some people - but not everyone - because of the role it plays in repairing the myelin that protects cells. Some of this could be misdiagnoses but it seems unlikely that this would explain all.

[AmyG6500 in reply to Gambit62]

Thanks Gambit62 I was dismissed by the first GP I saw so this time I went to see a different one and he was much more concerned and helpful, a second opinion was well worth it. I will stick with this one now and await the neurology appointment, probably in Oct/Nov.

[Grannyweatherwax]

Hello,

MS can often be misdiagnosed when someone has a B12 deficiency as the effects are essentially the same, only MS goes on to damage the cells/nerves themselves, not just their protective coating.

I hope that you are given the adequate testing for MS (MRI and lumbar puncture were the tests I was given to start with to test for MS.)

Not sure that diarrhoea is a direct symptom of B12 deficiency, but I am no specialist.

I am sorry that you have to go through the ESA procedure. I have to deal with PIP and I know it is NOT fun to try and get ANY money from our Government for "sickness".

Ensure that you do not accept the CFS diagnosis and sit back trusting them, fight for further referrals, further testing, I trusted their diagnoses (CFS and fibromyalgia) for many years and now I am so disabled I am on high care rate and high mobility on PIP.

Best of luck to you!

Granny x

[AmyG6500 in reply to Grannyweatherwax]

Thanks Grannyweatherwax (I'm a Terry Pratchett fan too)

I will keep pushing for testing.

Sudden unexplained diarrhoea is listed in the PA society symptoms. It's also known to be affected by anxiety. I was diagnosed with Generalised Anxiety Disorder 17 years ago and it often hard to convince doctors that NOT EVERYTHING is necessarily caused by that.

I'm in the assessment phase of ESA and awaiting my first medical. Fortunately I have a supportive husband who will come with me and a GP who has agreed to write a letter on my behalf for a small fee.

[Gambit62 Administrator in reply to AmyG6500]

GAD is a name for a cluster of symptoms rather than a proper diagnosis - it can have many different causes - one of which is B12 deficiency.

Really sad that GPs tend to regard it as a diagnosis - it's actually just a label.

[AmyG6500 in reply to Gambit62]

Gambit62 when I think of how much the NHS has spent on me for GAD, 4 referrals to the mental health team, several rounds of CBT and long term antidepressants it seems so crazy that the cause was never investigated. Not to mention 17+ years of struggling on.

I'll wait to see if anything shows up on an MRI but after nearly three months of alternate day B12 injections with very little change I'm wondering if it's been left too long to improve. I'll keep going another month and then reduce slowly, as suggested by the private doc.

[Cherylclaire Forum Support]

Hi AmyG6500 - very, very relieved that you are okay, although wishing you were further along the recovery route.

DON'T GIVE UP. Keep a close monitor on all symptoms, even if it seems obsessive to others, it gives you a chance to see minor improvements and new developments- and any possible links (dietary, timeline, early indicators, changes that are actually improvements*).

I too got disheartened when, after about 6 months of 2 injections a week, improvements seemed so minor, and I wrote a letter to my GP- who then handed my care over to a haematologist because she was worried about lack of improvement on such a high dose. This haematologist believes that B12 is "highly addictive". I am now on 1 monthly injection, and even that is likely to stop because of the above belief and because a) it is more frequent than the 2- or 3-monthly injections they are generally giving out and b) they do not believe that functional B12 is my problem. So more tests: latest will be breath test for Small Intestine Bacterial Overgrowth (SIBO)- mainly because, like you, I have diarrhoea as one of my symptoms.

I am now getting worse because 1 injection a month is not enough for me and realise now that very very slowly, I was improving in some areas and stabilising in others when on 2 injections a week. My MMA levels are increasing, my folate decreasing but Active B12 in blood is normal. Are you being checked for all this, Amy ?

*Changes that are actually improvements: One big thing that has improved and stayed:

I now rarely have to sleep for 3 hours in the afternoons- this has been replaced by some rather fish-out-of-water air-grabbing yawning sessions, but that's a huge improvement in my book ! Don't forget: this took 6 MONTHS- stick with it.

[AmyG6500 in reply to Cherylclaire]

Thanks Cherylclaire I'm so sorry to have dropped off the radar for a few weeks, too many things I'm trying to keep spinning.

I'm sorry you are not getting as much B12 as you need. What a nightmare. No my active B12 and MMA haven't been tested because the last GP said she wouldn't be able to interpret those tests even if I had them privately.

New GP (same practice but second opinion) thinks Neurology is the right referral so now I wait for that.

It's very good to know that changes can take a really long time, only the tummy trouble has improved thus far but it worsened again immediately I reduced the dose of B12.

Thinking of you!

Xx

[Cherylclaire Forum Support]

Neurology is the right referral- let's hope you get a really good one !

I realised that you had a massive lot to cope with. I still worried though- can't help it !

Wishing you and family all the best x