I'm new here, I was recommended this forum from a fellow person with M.E/cfs from twitter.
I've been diagnosed with M.E/cfs since 2009 and recently I have developed neuropathy (peripheral neuropathy). I started with numbness/tingling in hands and feet this march and eventually it has lead to constant neuropathic pain, especially bad in my left leg. The doctor has prescribed amitriptyline to me to help alleviate the pain. I am currently on 10mg but I had to drop down to 5mg due to the side effects.
I suspect the neuropathy is due to b12 deficiency as I know people with ME (pwme) are deficient despite b12 levels being normal in our blood work. Ideally I would like my doctor to prescribe me b12 injections so it can repair the nerve damage. But as I know from personally experience and reading about the many other pwme, that it probably won't happen. Which unfortunately puts me into a situation of self injecting myself. I have had conversations with other pwme on twitter about their experience with this and them self injecting. They have even provided me a link to buy the injections online from a German chemist. But I am apprehensive about taking the big step to self inject as I know they can be complications such as developing an anaphylactic shock from the first injection. And I would need to supplement the injection with folic acid. Also I've learnt my potassium and possibly iron levels could drop as a result of the b12 injections.
It would be great if others who are in the same situations and those who self inject with b12 could provide me with more information/resources, as it would help in my decision to take the step of self injecting.
But before I will self inject, I am planning on going to the doctors again and see if I can persuade them about the b12 injections (though I won't hold my breath!) and I will ask for another blood work to check my folate, iron, vitamin D, red blood count etc. levels.
I am finding this all daunting and I would appreciate any advice or help people could give me. My hope is to catch it quickly so I can start repairing the nerve damage and stop it becoming permanent.
Thanks
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blueivy_4
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Yes you need to self inject . The danger from anaphylactic shock is very remote. So have someone nearby to take you to A&E if need be ( it is more than unlikely )
I have been self-injecting for 4 years , and it now just routine . But of course I was extremely nervous the first time . I was alone and shaking like a leaf . I didn’t even know about anaphylactic shock .,
There are several German online pharmacies that will ship B12 ampoules to the U.K. - Hydroxocobalamin.
The above sites are in German , but you can use a translation app or use Google chrome
amazon.de has a site in English. Several German pharmacies supply Amazon.de, but some of the smaller ones do not ship to U.K. , somyou have to trawl through them to find ones that will .
Search for Rotexmedica B12 Depot . These are 1mg/1ml ampoules which invincibility convenient.— less liquid to inject .
Search for Hevert B12 Depot if you want 1mg/2ml ampoules ,
The courier charge is the same no matter how many you order .
Takes about 4 working days . The ampoules have about 2 1/2 years use-by date , and cost about € 6.00 - €9.00 for a pack of 10 ampoules plus about €9.00 for courier . I always shop around a bit !
You will need to decide if you want to inject into a muscle ( thigh ) I.M. .( a long needle about 1” )
, or sub-cutaneously . into the tummy-fat. --shorter needle .
Read all about it first .Both methods work .
Needles , syringes , swabs and a sharps disposal bin can all be obtained in the U.K. from medisave.co.uk . The higher the gauge number of a needle, the finer it is .
You never know you might be lucky and your GP will give you a course of injections?!
Have you read Dr .Sarah Myhill’s book called “Diagnosis and treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis — it’s mitochondria not hypochondria . “ ? It’s really a good read . She is THE expert . .( Amazon books )
Yes, I will make sure I have someone there with me in case of anaphylactic shock. Sorry you had to do it on your own, must have been scary!
If you don't mind me asking, how often did you inject per week when you first started SI and how many times do you SI now? (I know as time goes on the number of injections will depend on symptoms.)
Thank you for the links for where to get b12 injections and needles etc. and information, I will have a look at them.
Yeah I will look into the different methods on how to do it, I've read there is youtube videos on how to do it, I think. Just looking at medisave, quite daunting looking at the needles haha, but I know I have to do and hopefully will get used to it.
Hopefully the GP will agree to it but not getting hopes up.
For about a month . I injected every other day . There was such improvement that since then I inject once a week . I am left with the feeling of burning feet , but they are no longer numb, so I am really pleased about that .
I have read that people can sometimes be misdiagnosed with ME/CFS when they actually have B12 deficiency. It has happened to several members on this forum including myself.
UK NICE guidelines for ME/CFS state that when diagnosing ME/CFS, all other possibilities/other conditions should be excluded first before ME/CFS is diagnosed. Unfortunately current NICE guidelines on ME/CFS do not require GPs to test B12 levels.
I know from personal experience that it is possible to have severe b12 deficiency with results that are within normal range.
"before I will self inject, I am planning on going to the doctors again and see if I can persuade them about the b12 injections "
Link about "What to do next" if B12 deficiency suspected
Do you know what your current and past test results for b12, folate, ferritin or other iron and full blood count FBC are?
Best piece of advice I ever got was to always get copies of all blood test results. I was told on more than one occasion that everything was normal/no action and I found abnormal and borderline results on the copies.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
If you think PA is a possibility, worth joining and talking to PAS.
I feel it is more effective to put queries about treatment/diagnosis into a letter to GP. In UK, my understanding is that letters to GP are supposed to be filed with medical notes so are therefore less likely to be ignored than info given verbally or on photocopies.
Letters could contain symptoms list, test results, relevant family and personal medical history, extracts from UK B12 documents etc.
Is there a family history of PA or other auto immune conditions?
There is a lot of ignorance about B12 deficiency among some UK GPs and specialists so I suggest doing plenty of B12 homework in case GPs, neurologists etc have not done theirs.
Some UK GPs find it hard to cope with assertive patients and GP/patient relationship may suffer so have a back up plan eg another GP surgery to go to.
Pressure was put on me to leave one GP surgery...I was told I was too expensive.
I suggest taking a supportive friend/family member to any appointments that might be difficult. It's my impression that GPs and specialists are kinder if a witness is present......
Thyroid
Have you ever had thyroid tests? Suggest putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can do.
Has your GP excluded other conditions that have symptoms that overlap with ME/CFS eg PA, Coeliac, lupus, Hughes Syndrome (APS), Lyme disease etc?
My experience was that once given a label of ME/CFS, any effort to find a physical cause for my symptoms stopped.
I am not medically trained. More B12 info in pinned posts on this forum.
"suspect the neuropathy is due to b12 deficiency......despite b12 levels being normal in our blood work. Ideally I would like my doctor to prescribe me b12 injections so it can repair the nerve damage."
Referrals/other appointments
1) Have you been referred to a neurologist? You mention neuropathy, numbness, tingling. Do you have other neuro symptoms?
If you see a neurologist, see if they check your proprioception sense (awareness of body in space). Proprioception problems can be associated with B12 deficiency.
Two test that check proprioception are Romberg test and walking heel to toe with eyes closed. Videos of these and other proprioception tests on Youtube.
Above tests should only be carried out by doctor at medical premises due to risk of loss of balance.
2) NICE CKS link (up page) suggests GPs should seek advice from a haematologist for anyone with B12 deficiency with neuro symptoms present.
3) Gastro enterologist if gut symptoms present.
Gastro specialist should be able to spot signs of gut damage due to PA, Coeliac, H Pylori etc that may affect body's ability to absorb B12.
4) Podiatrist/Chiropodist
If neuropathic symptoms affect feet, you may be able to be referred to a podiatrist. Blog post below suggests in UK, some podiatrists are able to prescribe B12 injections for neuropathy. They are trained to look out for neuropathy due to diabetes.
5) Do you have any mouth symptoms eg sore tongue, ulcers etc? One symptom associated with B12 deficiency is glossitis ( sore, inflamed tongue) although not everyone with b12 deficiency has it.
Have you seen a dentist recently if you have mouth symptoms? They may be able to spot oral signs of b12 deficiency.
Thank you for reply and the wealth of information/links! Going to take me a few days to look up/read but thank you. I hear what you're saying and I know there are overlapping symptoms of b12 deficiency and ME/cfs but I am sure the ME/cfs is not misdiagnosed. I've had the m.e for over 10 years now and it's only recently that the neurological symptoms have developed. b12 deficiency and neuropathy is very common with m.e. But I am aware many people with m.e are misdiagnosed.
I am planning to see neurologist in November but I don't know if I can wait that long, there is a long waiting list. But I will bring up and ask if they will check my proprioception sense like you mentioned. And also aware I will have to convince them about b12 deficiency.
I'm afraid I don't know my current and past blood test results but I'm going to see doctor next Tuesday so I will ask for a print out. It is good advice to ask for copies of results and I will start asking for them from now on.
I have been tested for Coeliac disease, diabetes and thyroid and that was all clear.
There's no chance of internal parasites as I don't eat raw fish.
I'm not on any medication affecting b12/folate.
I will read the UK documents before I see doctor, I want to do my homework before I see them. As you're right there is a lot of ignorance about b12 deficiency amongst UK GPs and other doctors. And they do find it hard with assertive patients, that is why I bring my mum for 'back-up' and also cause it's hard for me cognitively/physically to go and talk to Drs because of the m.e/cfs and it is also my impression that they are kinder with a witness, funny that ha! That's a good idea to put queries about treatment/diagnosis into a letter to GP, I will do that. Trouble is this is exhausting to research and write letters to GP when you have ME/cfs but I know that I have to.
I don't have mouth symptoms eg sore tongue, ulcers etc?
I'm sure I have missed something out but getting tired. I will read up on the documents you've sent.
"I have been tested for Coeliac disease, diabetes and thyroid and that was all clear. "
Which Coeliac tests did you have?
In UK two tests are recommended. Did you have both tests?
1) tTG IgA
2) Total IgA
tTG IgA test checks for a particular antibody to gluten.
Total IgA checks which patients have IgA deficiency.
A person with IgA deficiency is unable to make the antibodies to gluten that tTG IGA test looks for even if they have Coeliac disease, so they will need alternative tests for Coeliac.
UK GPs sometimes forget to do the Total IgA test. Did your GP remember to do it?
Before you were tested for Coeliac, did GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood tests?
One reason for a negative result in Coeliac test is patient was not eating enough gluten before test and therefore not enough gluten antibodies were circulating in the blood to register a positive result.
Do you know which thyroid tests you had?
"I will bring up and ask if they will check my proprioception sense "
I hope they will do at least the two tests I mentioned; Romberg test and walking heel to toe with eyes closed. If the neurologist does not do any test/examination with your eyes closed then it's I think it's unlikely that proprioception sense has been fully tested.
Give a printed list of all your symptoms to your GP. Especially the neurological and psychological ones.
Keep a logbook of symptoms to be able to create the list. Assess your own severity score for each symptom to get a baseline. You’ll need this to monitor progress over months and years it takes to heal nerve damage.
Ask your GP for B12 on a trial basis. You may get fobbed off. And also ask to be shown how to properly self inject and they will know you are serious. They may just put you on loading doses.
There are some fairly decent YouTube videos on where to inject and how to self inject. These can also prepare you to ask the right questions at your surgery.
None of the dart throwing. I find slow and steady to be painless. Use two needles the first time. One to draw up the B12 into the syringe. Then change to a brand new sharp needle and clear the air from the syringe before injecting. The sharp needle will slide into the skin with very little pressure. Later on you can use a single needle for both when you get confidence.
Trick: I press and hold a penny on the planned injection site for the count of 10. It leaves a nice red ring indentation in the skin to clean with alcohol swab and a bullseye to aim for. You will also get a good feel if the skin in tough at the site and can move to a softer site with less blood vessels and corresponding nerves.
I recently bought b12 injections from a German company. I found I couldn’t actually inject myself. But a friend is doing it for me. I am on day three. I haven’t had any reaction. Just make sure you have someone sensible with you the first time incase you do take a reaction. Worth trying.
I started to self inject in July as a result of my doctor refusing to give me more B12 after the loading doses. She was going by blood levels rather than symptoms. I injected weekly as that is how long it took for symptoms to return. My last injection was 10 days after the previous one and I’m now feeling much better with even a 2 week gap, so hoping to do monthly very soon. Hopefully your doctor will treat you, but if not, self injecting is no big deal. I was scared, but it’s so easy I don’t even give it a second thought now. The people here are lovely and very supportive 😊Good luck.
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