Nerves are just raw

MRI came back good. Guess it's the Pernicious Anaemia. I am experiencing some numbness in my face again along with extreme sensitivity in my legs to the point I can't even stand anything to touch them. I have not slept well in a couple weeks because I wake up with mild panic. I do notice when I'm due for weekly b12 injection my memory gets foggy also. Wedgewood said it could be a sign I'm starting to heal because symptoms of PA get worse when they are treated. Someone also said b12 robs Peter to pay Paul so I also added potassium, magnesium, iron and vit D. I'm so exhausted trying to figure this PA out without the help of a knowledgeable doctor that knows about the disease. Thought maybe someone had similar could make a suggestion to help . My nerves are just raw at this point. Thank you

[Nackapan]

All I can say is keep going with your injections. Write symptoms down.

It's hard.

Try and take each day ad it comes and make sure yoh carry on with blood tests snd rule out anything elss out or in.

Potassium is safest from food.

Are you o any other medication? Some drugs can help calm the nerves.

Csn be used short term if needed

T C

[Ratherbewalking in reply to Nackapan]

Hi, Nackapan. Which drugs are you referring to, please? Thanks

[Nackapan in reply to Ratherbewalking]

They tried me with amitriptyline. Dudnt suit me but heloed my daughter for a while. Especially to sleep

I've bed offered duloxitine as a nerve suppressant. Gaberpentin .

Some antidepressants atd used fir nerve pains.

Depends on how you are coping and what sort of pain.

I used anti inflammatory ones.

Ibuprofen works gir me but yih cdnt take it long term .

I wax told yo stop using it as can give bleeds.

I'm back using it occasionally as well as paracetamol.

Had to stop that too as neurologist thought I was having rebound headaches . I proved j wasn't. As alternate .

All very tricky .

[Ratherbewalking in reply to Nackapan]

Thanks!

[Narwhal10]

Hi 25092,Sorry to hear you are poorly. Yes the ‘reversing out process’ can be painful. I can empathise - it can be pretty painful. Nackapan suggested a symptoms diary is helpful.

Someone suggested a vitamin D3 with K2 on here (which I take), magnesium threonate (was recommended by a private dietician - eBay - greens) and again as Nackapan said potassium from food. Most people can tolerate bananas but I can’t so it’s coconut water and beetroot.

healthline.com/nutrition/fo...

Best wishes

[Cherylclaire Forum Support]

You said that you can't stand anyone to touch your legs- that is not a tolerable condition to be in. I remember my sister saying the same thing and she was found to be very vitamin D deficient. This should be checked out by your GP and not just assumed to be the problem, though.

I was found to have osteoporosis of the spine and osteopenia of the neck on having a Dexascan for bone density. This was not long after being found to be B12 deficient. Folate and ferritin were also low and given 3 months' treatment. I now have vitamin D and Raloxifene on prescription. And the K2 spray from H&B.

These additional problems (low ferritin, folate, vitamin D) are quite common, and can take a while to stabilise at a good level. For this, if you do have these problems, you will need regular monitoring to ensure you are keeping well. Ferritin and folate can also cause problems at the high end. Difficult to gauge yourself and you should not have to do so. My GP still tests these once every year. I have recently stopped taking a daily multivitamin and mineral to see if I can maintain folate and ferritin etc by diet alone, since my levels now seem to be stable. B12 I now self-inject at a frequency that will best control my symptoms. It took me a long time to get any progress with this, much longer than I expected.

Nackapan is right- potassium best from food. Some people here get their magnesium through magnesium bath salts.

Your problems may well be part of recovery, but could also be something else missed.

There are few GPs that know a lot about B12 deficiency, let alone PA. This is due to scarcity of recent research and lack of training about the potential severity of vitamin deficiency symptoms. Diagnosis of PA can be particularly difficult - at least you have this hurdle cleared.

I would instead look for a GP that will look at you, listen to you, and try their best to get you well. This is the person you need to support you. The rest of it is no more than we have all had to do: read what little genuine research exists, find out what tests are available and their benefits and limitations, ask questions and discuss range of symptoms - only we did it with exhaustion, cognitive decline, failing memory and no more ability to concentrate than your average spaniel !