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Help please. No where to turn

Hello I’m desperate for help and hope you could give me some advice. In 2015 I was diagnosed with pernicious anemia and b12 deficiantcy. I have had b12 injections ever since along with liquid iron. I have had several episodes of being unwell and had many different symptoms come up that I have never had before. I will include the list of symptoms after. I went to the doctors and they tested bloods for pretty much everything. Iron levels are as normal as mine ever get so no problem there also b12 is spot on. I have done some researchelp and believe there is a big possibility I have MS. I am extremely frustrated as I need answers but nothing is getting done about it I’m constantlying told itshe a flare up with the pericious anemia or my vitimin d deficiantcey which I also receive treatment for. I am not convinced at all as I have had too many symptoms I don’t believe are connected to pernicious anemia and b12 Some of this being complete loss of use of my left arm and leg . Is there any advice you could give me in what I should do next. I don’t know we’re else to turn . And know that there are links between pernicious anemia b12 and ms. My symptoms past and present are Loss of use of left leg and arm couldn’t use them for a week. And still suffer with weakness. Trembling Joint pain Confused and forgetting words. Stiffness in legs and arms Pins and needles in face and arms Dizzy spellspells Heavy and extreme tiredness Bruised to touch and sunburn feeling on skin. Freezing cold feet and hands Muscle spasms in back and tightness around torso. Twitches/restless legs Blurred vision Urinating alot Headaches Itchy number areas on legs and arms Cramping in leads and arms. If anyone could advise me in anyway I would be extremely great full. Thanks for reading

Hi Smitho,

First I will say there is a lot of crossover between complaints but I would go as far to state that your symptoms do sound Neurological; therefore you need to see a Neurologist. Sounds simple, but I am aware how some of these doctors can be.

There are two ways; through your GP referring you; I think we can disregard this. The second way is to go private, no referral necessary; costs about £300, but all appointments; drugs; hospital stays have on the NHS; perfectly legal.

Just one caveat; ask on here for a recommended Neurologist in your area, don’t want to jump out the frying pan. Then you can be seen as quickly as next week.

Should not be necessary, but hey ho; the NHS is the best system in the world, but it has its faults.

Good luck

George

Hi Smitho, sorry to read that you’re having so many problems.

All of those symptoms can be caused by B12 deficiency/ ¶ as well as MS. How often are you getting your injections? There is unfortunately a big gap between guidelines for B12 (with neuro symptoms) of every other day until no further improvement and then every 2 months, and the common practice of 6 loading doses and then every 3 months. You may be under treated, it may be down to something else too.

I’m also on B12 injections (never been checked for PA but am Coeliac and likely down to malabsorption) but under neurologist investigating MS etc too. It sounds like it would be good for you to ask for a neurology referral - I went private for my first one as I was told it would be about an 8 month wait, but had referral from GP and then was referred back to NHS. But also there is more information available re the B12 if you would like a link to a great group for more info.

I’ve wondered if my symptoms were down to B12 and folate deficiency, but latest bloods have said that b12 is fine now. Hope you manage to get some answers soon. It’s a long wait for a Neuro referral and tests, which I’m guessing is why they say that it’s a lengthy process to diagnose. Good luck!