To cut a long story short , I have been seen by a neurologist to investigate the peripheral neuropathy from my diagnosis of pernicious anaemia.
He ordered a brain and neck MRI and blood tests and I got the results today .
I have severe stenosis of my cervical spine and straighting of the lordosis. My vertebrae are collapsing and discs are pressing on the spinal cord, hence the numbness etc.
The blood tests came back and I also have MGUS monoclonal gammopathy of unknown significance. According to the attached link , it can be caused by pernicious anaemia. Symptoms are numbness, pins and needles.
Blimey! You certainly have a battle on. I can't offer much advice other than to stick with the B12 treatment and whatever else is offered by your doctor for your other problems. Best of luck.
I think it must have taken a long time to get this amount of nerve damage, and so will take a long time to repair (where possible). The B12 injection regime recommended for nerve repair by medical advisory bodies is every other day injections until no more improvement can be gained by doing so - and then a maintenance dose of one injection every two months.
Until no more improvement is possible. Don't give up too early on this. Don't get disheartened. It can take a long time to feel better. A wonderful senior ENT consultant once told me this, just as I was starting to feel that there must be something else going on. There wasn't. He was absolutely right.
I have heard various people here discuss the beneficial effects of different types of B12, and where one type might be more beneficial for one set of symptoms over another, but do not know whether this is a personal choice and observation or scientific research-based decision.
There are several drugs that can deplete B12 - so ensure that any medication given for your other conditions (or, for instance, nitrous oxide given for operations/dental procedures) aren't getting in the way of your nerve recovery programme ! I found that some antibiotics given to me due to not being able to fight off infections easily weren't well tolerated any more - I experienced severe vertigo and constant headache.
Difficult, with so much going on, to disentangle symptoms. GP should continue with referrals to consultants to discover what else can be done to help you.
I am not a GP or medically trained. I'm just someone with B12 deficiency wishing you luck.
I’ve got severe cervical stenosis and need my neck stabilised. There’s pressing on my spinal cord. Neurologist says that it’s causing the numbness etc now.
GP reckons I’ve possibly had PA all my life . So I’m now dealing with the damage it’s done. It’s a case of eliminating each comorbidity one at a time.
Three months ago I had surgery and the nitrous affected me badly. Thankfully I am b12 EOD. But it took two months to recover my energy back.
I have ptsd from a childhood trauma, and all these medical condition diagnosis don’t help!
Just came across your post, although it’s from a few months ago .. I too have confirmed PA and have been told I’ve had it at least 20years probably longer.. I too suffered childhood trauma and have read that this can be related to auto immune conditions… I feel that a lot of my stress and anxiety is felt in my stomach .. when I panic which is a lot the first place I feel it is in my stomach… I wonder if it does have something to do with the trauma in childhood
part of my trauma was 6 weeks in traction and constipated for most of it, I’m sure that damage my stomach , then migraine headaches and vomiting blood from aspirin tablets did the rest.
hi Scott. You certainly have been through it!!Over the last 15 years I have been under 4 different Neurologists, had all the necessary tests etc etc, AND paid a LOT of money to see a private Neurologist. Had all the tests etc and at the end of the day, about 4 years ago, all agreed I had IDIOPATHIC PERIPHERAL NEUROPATHY in my lower legs and feet I am currently on fairly high dose of GABAPENTIN, 3 times a day. Up to recently, have tolerated this well with reasonable effect however, over the last few months , my pain has become worse again. For the last six months I have been waiting to go into a London hospital for a TAVI operation to replace an AORTIC VALVE . Obviously I have been stressed during this time which won’t have helped!! I am now going to have this operation on 13 th February . Maybe things will improve after that - hopefully ! I don’t know about you, but from late afternoon the burning and hurting and difficulty in moving my toes is really bad . This gets progressively worse over the evening and very bad throughout the night! Have you any thoughts or tips that might help I can’t make up my mind whether exercise ( walking) actually helps or makes it worse or actually doesn’t make any difference at all I am so tired of this ongoing pain every day!
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