What Improvement Can I expect?

[Galadriel1]

Hi I am recently diagnosed with PA, well according to the Dr. it was 'borderline' at 155 and my antibodies test was negative. I was given 6 loading doses over 2 weeks before Xmas. This was despite me reporting severe neurological symptoms and pointing out I had been to the Dr's years ago with the same/similar issues and dismissed and telling them what the guidelines said for neurological issues. Felt I was not believed and really had to push for a referral to a haematologist as recommended in the guidelines, they obviously didn't believe me and said I had to be seen by a neurologist first, who subsequently did refer me. Just before my diagnosis I was referred seperately to a specialist for the pins&needles/numbness and severe joint pain in left hand. I was sent for an EMG to hospital. Result in the end was a phone call from muscoskeletal Dr last week to say I have Carpal Tunnel Syndrome (early stages) he said! I told him I had PA and was having and had in the past same on right hand. He just said he stuck to his diagnosis, made me want to laugh! While waiting on those results, the referral to Haematologist resulted in a letter (I never saw him/her) to the doctor saying with neurological symptoms, loading injections should be until no further improvement and then every 2 months and went on to say that some patients benefit from lozenges instead of injections, which surprised me from the Haematologist. I was refused a copy of the letter and have had no direct contact with him or even know who he is. I then was restarted on injections every other day (3 a week) with no end date, I have to tell them when I feel better. Only thing with this is they ask me every time if I have any improvement and it's hard to say, I have up and down days and I have had pain return in right hand along with numbness and pins & needles and also burning feet, which I must admit I haven't felt in a long time. Not sure how much improvement I can expect or how long I should continue every other day. I started this set of injections on 25th Jan so this is second week. Sorry for long post, feeling a bit less woolly today!

[Lisahelen]

As a complete novice to all this myself i would be inclined to say that you are in a much better position than some of us in the fact that your treatment seems to be of an ongoing nature until you say that there seems to be no improvement of symptoms. Also 2 monthly injections are a bonus as some people are forced to endure a wait of 3 months before theirs.

Symptoms for most seem to go on the basis of they often get worse before they get better for many. Good and bad days are also often reported. Carpal tunnel has been diagnosed for some too, with what patients afterwards refer to as unnecessary operations once b12d P/A was given as the real diagnosis.

Lozenges were possibly offered as a more cost effective method of treating you as the injections, or should that be the nurse time costs the money.

Personally im inclined to say - get what you can while you can!

[Galadriel1 in reply to Lisahelen]

Yes I was surprised at the surgery not putting a limit on how many injections. Having been shown the letter by one of the nurses it is very short and does not mention the 3 week limit only says until no further improvement so guess Dr has still not done any homework and has just taken that sentence and said I can have them until I say I have enough! Lol. An unusual situation indeed, from reading the forums. I did have the electric pulse testing (EMG) at local hospital on my arm and hand so maybe I do have Carpal Tunnel Syndrome too but the pains etc. I am suffering from are def. PA. lozenges were mentioned at the end of the letter, it just said that some patients found that lozenges helped and may be an alternative to injections. I can't remember exact words, I only say it for about 5 seconds. I agree that is just about saving money (nurse time). I refused straight away and said people only use lozenges to try tide them over to their next injection as they are frequently not often enough. I'm trying to educate the nurses but do feel they are treating me as a difficult patient.

[Rett713]

I've just been diagnosed with PA, old GP missed it when I tested positive for both antibodies back in 2012! I was told they suspected carpel tunnel for pain in right wrist/hand (this was my first neurological symptom other than confusion/lack of concentration etc). I got fed up of waiting on NHS to confirm if it was carpel tunnel so saw neurologist privately for nerve conduction test which confirmed I didn't have it, also everyone I saw said some of symptoms were carpel tunnel but some weren't. It didn't help get me any closer the the PA diagnosis I had this week but it might rule it out if you haven't had nerve conduction tests already so they start looking at other things maybe. If they think you have carpel tunnel then why aren't they treating it which if I remember correctly it's splits and or injections in wrist or surgery if that doesn't work. If you don't think it's carpel tunnel then ask for nerve conduction tests to confirm either way. The two neurologists I saw never either mentioned or suspected PA/B12 def, nor did the rhematologist or orthopaedic consultant so I've kinds lost faith in all doctors at the moment. I guess I was lucky I tested positive for both types of antibodies and had symptoms so they can't really deny I have it now.

Also don't assume either your GP gives all other doctors the facts or that any medical professional actually reads your medical notes. They didn't in my case even though results were clearly there, highlighted in letter from path lab to my GP less than one year before I started to have more serious unexplained neurological symptoms.

Depending where you work if they have an occupational health dept or referral system as for one and see if they are more understanding as they may be able to advise or write to your GP. Have found occ health useful in past for other things.

I've only had two injections so far so not much help on that part of your questions, feel no different so far.

I've also got stomach symptoms so have asked to be referred to gastroenterologist which GP has done as seems they go hand in hand with PA. I asked about haematologist but didn't push it, GP said wait and see how gastro goes. I kinda figured the latter was more important at this stage for me.

Also they can't refuse you a copy of any of your medical records, letters, records or anything you have a right under data protection. If you search on here for medical records loads of advice on it or google it and NHS website will explain rights. Having found errors in my notes and the blood tests that should have diagnosed me in 2012 but GP missed or ignored I'd advise everyone to get a complete copy of there records. You should get most of what you need from GP, but may also have to put in a request direct to any hospital you were treated at as well. If you want to get your records I'm happy to send you a copy of the letter I sent to my GP. They were really good, I got them in 3 days and only charged me £10 (max amount is £50). Private message me if your interested.

[Crazykaron in reply to Rett713]

Hi, I would be interested in knowing how to go about getting access to my records. I'm in NI so don't know if there are different rules here.

Did you get a copy of your entire history or just test results?

[Rett713 in reply to Crazykaron]

Hi I got entire copy, but I'm sure there are things missing. Certainly one blood test and possibly letters from my GP to Path lab etc. I've gone back to previous GP and asked them for records and also hospital where path lab is located but waiting to hear back. I believe the Data Protection act applies in NI as well as England.

[Crazykaron in reply to Rett713]

I have copied your letter and will let you know when I receive a response. Thank you for your help and I wish you all the best.

[Galadriel1]

Hi yes I've had the test (EMG) at local hospital so assume they found something... have been told to wear a night splint. He did say it was very early stages. i am thinking of requesting my records. I appreciate the help, I will PM you.

[Sleepybunny]

"3 week limit only says until no further improvement"

Then BNF (British national formulary) Chapter 9 Section 1.2 which your Gp will have access to, I think says injections until no further improvement for those with neuro problems. See link below in Management section.

patient.info/doctor/pernici...

"they can't refuse you a copy of any of your medical records"

I believe they can refuse if they believe that giving you a copy could harm you in some way. I would have thought that if this is the case they would have to put their reasons for refusing in writing.

Has the practice manager or GP explained why they have refused?

Perhaps the PAS might be helpful to talk to.

pernicious-anaemia-society....

01656 769 717

Ideas for letters if unhappy with treatment

b12deficiency.info/b12-writ...

Sometimes MPs can be helpful in getting answers.

Help with complaints

england.nhs.uk/contact-us/c...

seap.org.uk/services/nhs-co...

nhscomplaintsadvocacy.org/

nhs.uk/servicedirectories/p...

citizensadvice.org.uk/healt...

Have you read the "BCSH Cobalamin and Folate Guidelines" ? This came out in 2014.

Useful books

"Could It Be B12" by Sally Pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

martynhooper.com/

b12d.org

[Gambit62 Administrator]

BCSH guidelines for neurological complications are 3x weekly until no further improvement in symptoms - but recommends a review after 3 weeks as a practical step,

I'd suggest keeping a diary but may be doing it in 8 hour chunks rather than daily chunks.

Tarsal tunnel is known to be an early indicator of B12 problems ... so a bit frustrating that carpel tunnel doesn't come with the same warning. Tarsal tunnel occurs in the feet because the nerves that run through your feet etc run through a mass of bones and ligaments and can get restricted/rub. If the myelin sheath that protects the nerve cells is a bit more warn than normal because of a B12 deficiency then it shouldn't be a surprise that you are more susceptible to noticing the effects of any constrictions.

I had carpel tunnel diagnosed in my 30s when I was waking up in the morning and the only way I could undo my fist was to use the other hand. Wrist position can really help - just getting the wrist to a point where it is straight. and leaving it there for a few minutes. My problems were aggravated by water retention during menstral cycle but learning to sleep with straight wrists (splints at night can help with that) and also making sure I kept my wrists as straight as possible during the day has kept the problems at bay for 20 years. Things have also improved since I started getting the levels of B12 I need.

With the feet - using arch supports can really help ... I sometimes find that sleeping with the foot that is a real problem for me on the ground rather than in the bed - where I can keep it at a much better angle - helps a lot.

You may find that methyl helps a bit more but it doesn't help everyone but it may be worthtrying methyl sub-linguals to see.

And high dose oral does work for some but not all - though sounds like it was sublinguals that were being suggested - idea there is that the B12 is absorbed through membranes in the mouth. The high dose oral is basically about floodingthe gut with B12 in the hope that enough is absorbed outside the ileum (1% of B12 is absorbed in the gut outside the ileum).

Unfortunately measuring levels in blood doesn't really mean an awful lot - tells you how efficent your kidneys are at removing B12 from your blood but doesn't really say anything about how your body is managing to process it and what is happening at the level of the cells where it is really needed.

Can't really give you time-scales and it is always possible if you have had problems for a considerable length of time that some damage isn't going to get repaired. However, the fact that you say you are feeling sensations that you haven't felt for a while - even if they are problematic - is a good sign - I remember something similar and realising that what had probably happened was that the problems with the nerve lining had probably got to the point where signals weren't getting through at all and that was the point at which they started to come through again.

[pvanderaa]

Energy comes and goes with each injection.

Neurological damage is much slower to repair. Start a log book and make a daily assessment of the severity of the symptom. Your scale is fine. Measure yourself and your symptoms each day. Have a discussion with your Dr and explain what you are planning. Don't get fobbed off with statements like the GP knows best and we'll monitor your progress. They can't possibly take enough measurements to monitor things reliably. Ask for any advise of methods to use if you're not sure.

As you are given medications, assess the changes to your scores and share your results with your Dr to either reinforce the stuff that is working or to change the stuff that makes matters worse.

For my brain fog and short term memory loss, I was advised by a neuro-psychiatric doctor who was a friend, to attempt to play a game of majong (Chinese tiles game) from the internet. I was to measure the time it took to win or lose. The time was the score.

I found another memory testing game that was not based on numbers of letters, but was instead 10 facial features. After seeing a face for a short time, the test was to reproduce it with multiple options for each feature. The number I got right was the score. Right after my injection, I could score 10 every time, but whenever I was getting low on B12, the score dropped too.

It's been 8 years since I was diagnosed and after getting increased dosages and finally self-injecting, I'm not only holding steady but improving. It is a roller coaster ride so there are highs and lows but the average has gotten better.

I'm currently on 1ml of 1000mcg/ml cyano-B12 per week. I take 0.5 ml on sunday night and 0.5 on Wednesday night. Alternating buttock cheeks. I try not to sleep on the side of the injection for 2 nights. This allows it to diffuse at a fairly constant rate into my blood stream.

Then daily I take 1.6 mg folic acid in the morning before a long commute. Traffic pollution seems to also cause me to consume B12 faster so I keep the air on recirculate for as long as possible. I take another 1.6 mg of folic acid before the drive home. I find that the folic acid helps me better deal with the stress.

I also take 100 mg of B6, a daily centrum 50+ for men multi-vitamin and a Vit D3 gel tab at lunch with my meal. I had been taking these just before bed but found that I was having an upset stomach during the night, so I switched them to lunch.

I also supplement with 5000 mcg methyl-B12 sublingual tablets throughout the day. I take 2x about 20 minutes before meeting to clear my head and allow me to think clearly. Also, If I'm feeling a bit run down, taking 2x perks me up and lasts for 3-4 hours. It all depends on how much stress / worry / and thought I'm going through at the moment at work.

Exercise is also important. I find it very hard to get started but once I get going things improve and I can go for a long time.

Exercising muscles - gentle movement and light weights - allow the brain to send signals to the muscles. The signals go along the nerves and where there is damage, this activity stilumates the repair. So range-of-motion exercises and controlled activity are the best for this. The more muscles you can exercise, the more corresponding nerves can be stimulated to get repaired.

As things improve, of course you try to do more and be more "normal", this results in tiredness so you have to first be aware of what you are doing or trying to do and then pace yourself or build up to doing that task again.

Pain is an interesting symptom. As nerve damage is repaired, typically the mylin sheath is repaired. It is thought that nerves where the axon is damaged are not repairable, Anyway, as the nerve get repaired the signals get stronger. It takes a while (few days) for the brain to recalibrate to the stronger signals. The result is an illusion of pain. You need to first reassure your self that this particular symptom is the result of the improvement. It's kind of backwards because we normall avoid pain altogether.

Progress is very slow so use your logbook and look back a month or two to see how things have progressed. with short-term memory loss, you will have long forgotten how you felt, so the log book becomes your memory jogger.

Good luck.

[Galadriel1]

Thank you all for the reassurances and advice.

[humanbean]

If you don't get any relief from the carpal tunnel or the burning feet symptoms with the injections, you might want to consider whether you have underactive thyroid problems i.e. hypothyroidism.

The number of people who find out they have both conditions is quite astonishing, and they also have symptoms in common. People with B12 deficiency later find they have thyroid issues or vice-versa, they discover they have hypothyroidism and then discover they have B12 deficiency.

I had burning feet which I self-diagnosed as plantar fasciitis. It was one of the last symptoms I got before treating myself with T3 (a thyroid hormone medication), and it was then one of the first symptoms to go. I also have B12 deficiency problems which I discovered later.

Some people may discover their burning feet aren't fixed with thyroid treatment but will get better with B12, whereas for me it was the other way round.

I feel this post is very clumsily written. Hope I've managed to get my point across!