GP won’t refer me?

[Sirian]

I have muscle twitching, burning and tingling, aching and pain. The GP has done loads of blood tests and the specialist GP did neuro examination like checking muscle strength and reflexes etc. They believe it’s vitamin deficiencies, but I had 3 months of supplements and I’m not cured.

I asked for a neurology referral. The GP said she can’t refer me because I don’t have any specific symptoms of any neuro disease like unsteady gait, loss of balance, tremors, abnormal reflexes, vision abnormalities, confusion, etc. I said nerve pain and twitching are neuro symptoms? She said no, they have many causes and most likely anxiety and vitamin deficiencies, I see no symptoms that warrant a neuro referral. And if I do refer you the neurologist will just reject the referral because you have no neuro symptoms.

So what do I do now? The GP can’t fix me but I can’t get referred. They’ve just given me more supplements and offered me meds for anxiety and depression.

I feel your pain. I have a 10 year old who wets the bed. Referral to the specialists has been rejected 3 times and the gp is reaching the limit of what she can do.

Fuck sake, another woman told that her physical symptoms are in her head. Is there another GP you can see for a second opinion? Even paying to see a private GP if necessary, as they can do referrals.

I was getting migraines when id never had them before, and dizziness. I knew there was something wrong but Gp wouldn't refer me so I put in a complaint to the surgery.
A different GP looked at my notes and referred me to neurology.
Long story short, I have MS. First GP missed the warning signs.
Moral of this story, make a complaint and fight for a referral!

I’ve seen multiple GPs. All saying the same - no neuro symptoms, we cannot refer, we don’t think you have anything serious. My iron and Vit D are low and they’re saying that must be the cause of my symptoms. But I’ve had various supplements and I’m not fixed. They’re just saying I need a longer course of supplements.

Do continue to get checked out and try taking magnesium supplements— I take 1 gram per day mag citrate. The amount you get in multi vit and multi mineral supplements is not enough for many of us.

Not saying you don’t need a referral, but if supplementation is not working, the GP should be working with you to fix that surely? Are they saying three months isn’t enough for it to sort itself out with the supplements they have you on? Also, how is your B 12?

B12 is 255 Ng/l. Normal is 191-663. So I’m towards the low end but well within normal range. They tested magnesium and calcium and they’re fine too.

GP says I must need a longer course of supplements. They’ve given me a higher dose of Vit D and told me to continue with iron pills and take a multivitamin as well. I have coeliac so I have chronically low vitamin levels anyway.

They're offering you suggestions so try them out. If the symptoms persist, go back. There are criteria for referrals and you don't meet them. GPs aren't just gatekeepers, they are trained doctors and are sharing with you their professional knowledge. If you go back saying that you have tried xyz as suggested and for the suggested period of time but the symptoms persist then the GP might have more options for referring you. At that point they can say to specialist colleagues that other causes have been excluded. Work with your GPs, not against them.

Edit: typo

They’re not saying that all.

They’re saying she doesn’t meet the criteria for referral and even if they do the neurologists will reject it, so she won’t be seen anyway.

Honestly GPs don’t withhold referrals for fun. They know what will and won’t be accepted!

Multivitamins are next to useless as the amounts are so small!

If they have done neuro tests and they have all come back negative then unfortunately they have a point. Vit D deficiency can cause these issues, as can anxiety, speaking from experience.

I had a calcium and Vit D supplement for 6 weeks but it didn’t help. So they gave me a high dose Vit D capsule and an iron supplement that I’ve taken for the past 4 weeks. I’ve been on pills since September but I’m not fixed. The GP today said 4 weeks on the high dose Vit D and iron isn’t enough, I have to take them for another two months then have another blood test. If my levels have gone up and I’m still in pain they can consider what to do.

It just seems ridiculous. I could be on the waiting list for neurology in the meantime. But they said I don’t have any symptoms to warrant that referral, they’re certain it’s anxiety and deficiency. I’m scared they’re wrong.

I think it’s worth giving the supplements 3 months, these things take time (speaking from experience). They gradually up the levels of vitamins in your body rather than immediately fix the problem

You might want to research the MTHFR gene. Basically if you have this gene, especially if you are homozygous, you can have issues absorbing Vitamin B12. So your levels might look within the normal range but you are potentially not absorbing it into your body.

It is apparently easier for you to absorb if you take a certain type of Vitamin B12 (cyanocobalamin) which is more easily absorbed if you have this issue.

GPs in the UK never seem to know about this but is not an uncommon gene to have. There is a good website with loads of info about this if you google.

I had the same. Low vitamin D so wouldn’t refer until my levels were up as referral would be rejected.

I did get the referral, and was told there was nothing wrong with me. So a referral doesn’t mean much.

@Sirian can I ask where your pain is exactly? if it is localised to one specific area, or all over?

Also remember that your absorption will be suboptimal because of your coeliacs. My son has the same condition.

Achy all over, twitching and tingling all over. But my legs are the worst, especially inner thighs and calves. My legs absolutely burn, and the longer I stand up the more they burn. I used to work an 8 hour shift but now I can’t stand for more than about 40 minutes. Apparently this sounds like iron deficiency?

@RougeFraise did you eventually get a diagnosis?

It so like fybro to me! Ask for a rheumatology referral!

https://www.nhs.uk/conditions/fibromyalgia/symptoms/

Sounds very much like my Long Covid/fibromyalgia

Could be neuropathy. Have they checked your blood sugar as neuropathy can be a sign of diabetes

Did they check your folate alongside your b12?

You are spot on.
However, as a patient, any patient if you are not happy with GP, seek second opinion or try a private GP. However, as stated above, the neuro may reject referral but worth considering IMHO