Worsening neurological (?) symptoms - really worried

[SinkGirl]

So I’ve had a lot of health issues for many years. Already had endometriosis and was then diagnosed with ME and fibromyalgia but it really doesn’t fit. I’ve gone down the route of paying for private blood tests on multiple occasions to try and figure it out, but aside from vitamin D deficiency there’s nothing clear cut. Thyroid levels at the high end of normal, vit B12 low end of normal, nothing my doctors will act on.

18 months ago I had a strange patch inside my right knee with a strange burning sensation - a bit like when the blood rushes back after sitting strangely on your leg. Over time it has spread very gradually to both legs, knees to toes and is literally constant now. I’m starting to get the same in my right hand. I have carpal tunnel that comes and goes in both arms. A 3-4” wide altered sensation strip across my upper back that has been there for two years but sometimes spreads higher and lower. I can’t grip anything really wide (like a big jar) or thin (like peeling the film off a packet).

Right now I’ve got a similar burning tingling sensation in the middle of my face, which is new.

This isn’t even mentioning the hair loss, weight gain, complete absence of sex drive, heart palpitations, spells of vertigo etc etc

My GP isn’t listening to me - saw her a month ago and she put me on antidepressants and told me to come back in six weeks. I am not depressed, just low because I feel so unwell. I only agreed because maybe if I do as they ask they’ll agree to try something else.

I had a load of blood tests done in August by the GP - aside from low vitamin D and folate (now supplementing both) nothing showed up. My calcium is right at the bottom of the range, MCH slightly above range, B12 low in range (254) and I know some people are symptomatic at that level but getting the GP to listen is another story.

What can I do? What can I ask for next? My doctor thinks that doing private blood tests is making me anxious - no, I’m anxious because I don’t know what’s wrong with me and no one seems to know or care to help me figure it out.

Does anyone have any ideas on what I should be asking the doctor for next? They did try to refer me to a rheumatologist but the refused to see me because the GP already diagnosed fibro - I just don’t believe that’s what this is as it doesn’t explain most of my symptoms, and I wouldn’t really describe what I’m experiencing as pain.

I think you need to see a neurologist and have an MRI.

I agree - the problem is getting my GP to agree! I don’t have the money to go privately but if they don’t do something soon I’ll have to get a credit card or something. As I stand here right now both of my lower legs feel like they’re on fire as does my upper back, it’s not right, I know it’s not right.

Pernicious anemia , you B12 are low , UK guidelines are awful.

I find it concerning that a GP diagnosed fibro. Not only that, but it was diagnosed without ruling out other conditions (though this is increasingly common)
What were the antidepressants? Some are used for nerve issues rather than antidepressant qualities.
When are you due to review bloods for improvement with D and folate? Are you supplementing the b12?

Has MS been ruled out? I would be seeing a different GP if i were you!

If you could manage a private consultation you might get referred back into the NHS that way.
It does sound like B12 deficiency.
Try googling which of your local NHS neurologists do private work.

Thanks everyone - I so appreciate the response because I feel like I’m going mad. I’ve seen multiple GPs in my practice over the last couple of years - it’s a very good practice, the doctors are well liked and unfailingly pleasant but it’s like I’m into a situation now where they’ve labelled me as someone with non-specific chronic illness and that’s that. They have agreed to do blood tests but when they’re in normal range that’s the extent of it.

The antidepressants are sertraline, not something like amitriptylene or duloxetine, both of which I’ve had in the past for neuropathic pain related to the endometriosis.

They haven’t referred me to a neurologist, done an MRI, nothing like that. Pernicious anaemia and MS are my suspicions at the moment. Inflammatory markers like CRP all normal, thyroid anitibodies are normal but my thyroid levels are all over the shop (most recently TSH 3.9, FT4 13)

When I mention the neurological symptoms they gloss over them but they’re the thing concerning me the most. Maybe I haven’t made enough of an issue of them because they’ve happened so gradually.

They insist my folate is now fine as it was 5.6 when they tested it in December but in the private blood tests I just did last week it’s dropped already to 4.4 so I’m taking supplements again (lowest it’s been is 1.61). They’re not going to retest that and say there’s no need to retest vitamin D as long as I take the supplements (I’m not taking what they’ve given me, I’m taking 10,000iu plus K2 and magnesium after doing a lot of research).

My latest blood tests included active b12 which was in the 60s so still not ideal but not out of range - I have so many symptoms of b12 deficiency though that I’m hoping they’ll agree to trialling injections given the neurological symptoms.

I’m just at a loss as to how to convince them to investigate further because they don’t want to and fibro is an easy label to give me and shut me up but I’m not buying it.

Going private will be my next step of then don’t listen when I see them in a couple of weeks.

My weight is another weird one - took me a year to lose 8lb, then I lost 5lb in a couple of weeks and now I’ve put 6lb on in the last week. The only thing that’s changed is the vitamin D and and the antidepressants. It’s all so strange.

I’m just struggling to manage - I have twin toddlers with additional needs and I need to be functioning, not dragging myself through the day. I’ve had awful fatigue going back 11 / 12 years to my ME diagnosis so that’s nothing new, but the rest of this has gradually developed over the last two years. My hair is falling out, I feel like death and I just feel like I’m being left to rot. I don’t care what it is - even if they said it was all psychosomatic I wouldn’t care if they could find some way to help.

Addisons? or something to do with your adrenal gland.

Get a private test for B12 which doesn’t just look at blood levels

Or Cushings?

What are your iron and ferritin levels like? I had numbness and hair loss when my ferritin level was low.

Doesn't sound like Addison's. I've never had the tingling/burning described

This is my latest private results from last week - ferritin was 41 a few months ago so it’s going up

Can you get your partner to come in with you to reinforce that this is not acceptable and persistent numbness/altered sensation is something that needs to be referred to a Neurologist?

Unfortunately, it's common for women to be written off as having depression and fibro - and for a man to be properly listened to, rather than having his head patted and told 'it's all in the mind, dear'.

Just by having him there, it's more likely you will be referred immediately.

If there's something specific that you suspect or are worried about have you tried asking your GP directly? Ask them if they think MS/pernicious anaemia is a possibility with your symptoms and if they say no ask them to explain why. I think that would be my starting point.
Then ask directly for a referral. If they can't explain your symptoms then it's fair enough to ask to be referred to someone who may be able to.

I believe that you have multiple symptoms and it doesn’t a fit under the one diagnosis you are perhaps concentrating too hard on.
The grip is most probably to do with your carpal tunnel problems - was this diagnosed with by a rheumatologist, neurologist or a Surgeon? Unfortunately it is an effect of the condition and treatment depends on the severity.
The burning sensation around your legs could be a multitude of things - a disc problem in your lower back to circulation. You need an MRI.
Hair loss most probably is stress, alongside the loss of libido, the fatigue and heart palpitations. That’s what the Sertraline is for. The right antidepressant and correct dose will treat the anxiety, If it’s not working you need to tweak the dose or change the drug.
I think once you’ve cracked the antidepressants, you’ll feel much better to deal with the rest.
Good luck!
Ps. You’re a stronger woman than I to be rearing twins! ⭐️

I would start with thyroid. TSH too high for comfort. Within NHS guidelines but sufficient to be worth consideration.

Functional neurological disorder?

Can you get hold of the nice guidelines for neuro referral?

It's possible you may need to complain to practice manager that you aren't being referred as per guide lines despite requests.

Just putting it out there, but these sensations you are experiencing sound exactly like what my DH was experiencing. He was diagnosed with health anxiety. The anxiety manifests itself in these very real sensations (or numbness). He’s also on setraline. He was convinced he had MS, Parkinson’s, you name it. Of course I have no idea if this is the case for you. Hope you get some answers.

Thanks everyone :)

I don’t believe those symptoms are down to stress or anxiety. The loss of sex drive happened when I was on a hormonal treatment that works on the pituitary gland for two years - after that I went straight back on to the pill and my sex drive stayed gone. Eventually I came off the pill and within a few months it was back, like a switch being flipped back on.

It went away again during and after pregnancy while pumping - once I stopped, again it came back. Went back on the pill after a few months - gone again. I’ve been off the pill for a year now and it’s still not back. I was getting a slight improvement a few days a month and worked out after a while it was around ovulation, but that got less each month until it was just constantly gone.

I don’t think it’s health anxiety - I could be wrong. The antidepressants have made no difference whatsoever.

I agree my thyroid levels are definitely not optimal but until they’re out of range they won’t do anything at all.

I’d love to take my husband in with me but there’s no one to look after the twins. Will see what I can do.

Are you by any chance taking supplements/multivits containing vitamin B6? Even low-ish doses can bring on neurological symptoms. Just throwing it out there... hope you find some answers soon x

I should add, the potentially neurological symptoms haven’t been a particular concern to me until recently - it’s happened so gradually that it hasn’t seemed that major until I sat down and thought about it recently. If I woke up one day after feeling normal with all the symptoms as they are now, I’d be really scared. I could understand anxiety causing progressive symptoms if you’re worried about them a lot but I haven’t been really. I’ve been reasonably sure for over a year that my thyroid is an issue, and my levels have gradually worsened over time, just not enough for any treatment (in the UK at least!).

I eat plenty of animal products so B12 shouldn’t be an issue - I’ve taken supplements in the past but it hasn’t made much difference. I’d like to try injections to see if it helps and I hope they’ll agree it’s worth trying.

Can’t find any info on the NiCE website about referrals to neurology under these circumstances though.

Thank you so much for all the suggestions - I’m willing to consider any possibilities that might help!

No, not currently taking any multivitamins - only supplements I’m on are vit D, k2, magnesium and folic acid and those are all quite recent, all of this predates me taking those and the sertraline.

I had neurological symptoms which started when I was sub-clinically hypothyroid. I think you need to look into this further. I had an MRI scan for MS but it was all down to my thyroid. Thyroid UK are really helpful and their forum is amazing:

www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html