To ask you to diagnose me?

[ImPickingUpBadVibrations]

Long time lurker, first time poster.

So for over a year now I have been suffering from tingling. It started off in my left foot, progressed rapidly to my right, then my left hand, then my right hand. After a month and a visit to a physio i saw my GP who ran bloods and found a problem, so assumed it was that.

I have since had treatment for that issue.

Tingling continues.

Over time it has changed. I now mostly have it in my lower legs and my chin, however I get full on pins and needles if I sit on a toilet for longer than a wee, sit on my feet or hold my phone for ‘too long’. Too long is not long at all compared to before.

There are times, mostly at night, when I feel like my body is shaking but I’m not moving. I have googled internal tremors and it’s scary. When this happens, it is usually as I have laid down to sleep so I’ve just turned the light off. I’ll then have flashing lights when I close my eyes.

Around the same time I also started suffering from chilblains in my feet (even in spring). This winter I have discovered I have raynauds in my feet (I am over 30, apparently this is important with Raynauds?!). I don’t know if this is linked or a coincidence. I also suffer from mild constipation (started around the same time) and acid reflux (no reason for this. I am not overweight, don’t drink, exercise etc. Again started to become a problem around the same time).

I saw my GP again who won’t refer me to a neurologist because my Vitamin D is low. However once I’ve finished my extra strong course, I am sure I will get a referral, just because they are sick of me.

The first doctor I saw ruled out MS as it was symmetrical tingling and I had a brain MRI done for other reasons which was clear.

Strength tests etc were all fine. Coeliac screen was negative.

I am here because I am hoping that someone out there has had the same symptoms and can steer me towards the right kind of tests to find out what is wrong with me. It is literally constant and when I’m busy I can ignore it but it is really starting to worry me now.

Thank you.

Not being referred to a Neuro because your vit d is low is absurd. For one, most people have spent the last year indoors and secondly, it's winter. The majority of people have a vit d deficiency, just on a variable scale. Mine has been dire for years.

The GP evidently hasn't any idea, has tried all the easily available test and diagnosis options and should at least come clean and refer you so there can be progress.

I'm under a neuro but for totally different reasons and up until an a&e admission where I went a bit blind for a while, they kept telling me I'd pulled a muscle and just needed to do neck exercises, it very much wasn't that. Carry on asking to be referred, make sure ALL of your symptoms are clear to them and that you're not just going to suffer through it while a supplement may or may not raise your levels.

My initial thought when I was reading your message was that it was MS, but you said that had been ruled out. I don't know what it could be. I imagine it must be very frustrating. I hope you get answers.

You need a referral to a neurologist. Change your gp.

@daisyjgrey thank you. They said it was because neuro would refuse the referral whilst my levels were low in case that’s the cause of my symptoms so we need to get my levels up first. They literally haven’t changed since my first set of bloods despite supplementation (and a glorious summer!)

My ferritin has decreased for no reason as well so I am wondering if I have an absorption issue. But that is another story (or is it?! I don’t know any more!)

Have you had a blood test for Lyme disease? Could you have been anywhere near ticks (anywhere with deer, sheep etc)?

I have these exact symptoms. I've had 3 telephone consultations with a neurologist, clear MRI. They think I have small fibre neuropathy, linked to an autoimmune disease I have: Sjogren's syndrome. My symptoms seem to change and I currently have a new one, my left foot keeps feeling like it has hot water on it. My vit D is low but it always is. too Hope you get some answers.

B12 deficiency. Can have symptoms even with normal results because the blood test done as part of the standard regime doesn't test for active B12 only.

B12 is not always tested by GP so check if you have. If you have and it came back normal, ask for an active test.

Honestly, neurology through the NHS seems to really be bad in some areas. My best friend has plaques and lesions on her spine and in her brain as evidenced by MRI, clear relapsing remitting MS symptoms and they refuse to diagnose her with it because she's got anxiety so they attribute all of her symptoms to that. She's got anxiety BECAUSE of all of her symptoms they won't diagnose! Sometimes, using the choose and book to select a hospital out of borough is the best thing to do. Find one that has a really good reputation for neurology and ask a different GP to refer you to that one.

@MRex no test for Lyme disease. No risk factors that I’m aware of.

@Zoeyclash it’s been ruled out by a GP but not a neurologist.

@MrsDaisy2 thank you for sharing. Sjrogens keeps coming up on google but I don’t have any of the symptoms (except dry eyes, but they’re only mildly so)

@dontdisturbmenow I have had my B12 tested several times and it’s always normal, middle range. I’m not sure they’ll allow an active test if it’s not nearer the bottom range? I’ll ask though. A B12 deficiency would honestly be a relief at this stage.

@FuckingFabulous that is absolutely awful! Your poor friend 😩😩😩 she needs treatment!

Oh, I know! She's only in her 30s, and she's even had it said by the ancient and somewhat doddery neuro that she's under that she "doesn't want such a diagnosis at her age." As if she can just pop the symptoms to one side for now. 🙄

My daughter developed a sudden neurological condition in November and I immediately opted out of my area and chose a different hospital and she's getting tests done as quickly as they can given the pandemic.

Honestly, my best advice really is to research which NHS hospitals have excellent reputations for neurology and insist on a referral to them. Or even a specific neurologist. Do your research and use the rights you have to ask for your referral to go the the place or person you want

I have had similar tingling / pins and needles issues for the last 6 months which began in my left hand then spread to the right, mouth, chin and feet but come and go in frequency and severity (appeared alongside a host of other more bothersome symptoms), tremors too but not internal and only occasionally when very stressed or tired. I've seen quite a few specialists who found nothing and had an MRI (clear) but not managed to get an appointment with a neurologist yet. I was also low in vitamin D though I think that is fixed now.

However one possibility I'm looking in to is lupus and especially because you mention Raynaud's, which is sometimes a symptom of lupus, you should maybe consider this too? It can present with all kinds of weird and fluctuating symptoms including peripheral nervous system issues. Acid reflux is also a symptom. Lupus is most common in women of childbearing age. Are you more fatigued than usual? Any red itchy skin patches especially on your cheeks or after sun exposure? Joint and muscle pain especially first thing in the morning? What was the problem with your bloods? If it was anaemia that can also be caused by lupus.

Might be worth a look at Lupus UK website though it is quite hard to diagnose (various blood tests for inflammation and antibodies, symptom profile with exclusion of other possibilities I think).

@ImPickingUpBadVibrations
The level where the NHS thinks you have low b12 is actually really really low. I have a friend who has absorption issues, recently the GP who has been giving her B12 jabs (for over 20 years i might add!) Recently decided she didn't meet the threshold for treatment.

B12 is a really funny thing. I was really quite unwell when I was deficient, I think it affects people in different ways, but I did get tingling in my extremities, I got worsening of anxiety, these awful shaking episodes and my heart rate kept spiking up for hours on end, I got sores in my mouth, my insomnia worsened and don't get me started on the lack of energy, plus my hair was falling out like crazy.

I was taking B12 tablets but it just wasn't doing anything. I went and got a b12 jab privately.

First week, I actually had the energy that I stopped napping and could sort of get on with life, didn't get the pins and needles after this

Second week, I had such a burst of energy! It was amazing. I had a real sense of wellness.

Week 3, also GREAT. All of my symptoms were gone.

I've just missed a jab by a week. Pins and needles are back (I'm sat on the stairs because they started midway down on my legs) I'm feeling like I need to sleep a lot but can't get off to sleep at night, sluggish and I've got an ulcer.

Give a private jab a go, you'll know very quickly if it is a B12 deficiency.

Hoping it is just that for you!

Reynolds?

Has your thyroid been checked? Peripheral parasthesia like you describe is a symptom of hypothyroidism I believe. But not a common one. I’m sorry if that’s already been suggested or ruled out.

dd gets a lot of tingling and numbness. She has EDS and also fibromyaligia and they've said it's the fibro which causes this.

@FuckingFabulous funnily enough that’s not the first time I’ve heard a doctor speak to a patient like that. Like they want a bad diagnosis when that is definitely not the case! Appalling. Thank you for your help. I hope your daughter is ok.

@potatoesofdefiance I hope you are ok. I’m pleased all of your tests are clear at the moment but I know as reassuring that is, you still want a diagnosis!

My previous illness was hyperPARAthyroidism (my bloods showed high calcium and high PTH). I’ve since had surgery and am officially cured. My endocrinologist is the one that has suggested neurology. I don’t think he is thinking lupus although that came up in my initial research. My fatigue is much improved since my surgery (high calcium makes you knackered too) and I am not in any pain. I am sensitive to heat (worse in the last few years) but I don’t have any skin rashes. Although actually I forgot to add, I am covered in petechiae (blood spots). They’re all over my body but well spread out. Bloods for leukaemia etc all came back normal. Honestly I feel like I am at the doctors on a monthly basis.

@Inpersuitofhappiness that is really interesting. My last level was 277 (range is 120 - 900). Is that sufficiently low enough to consider it could be causing symptoms? It was 231 in November 2019 (symptoms started in October 2019).

@Ileflottante thank you. I have had several thyroid function tests and they’ve all come back normal. Although for other reasons I am due a calcitonin blood test which is linked to the thyroid (they are specifically looking for medullary thyroid cancer due to a genetic test rather than symptoms).

Just to mention that you can get a private extended b12 test from Superdrug Doctor online. If it shows deficiency, Superdrug will give you private injections.

Have you been checked for diabetes at all? I've just been diagnosed after having similar symptoms. Hoping it relaxes once I start to get sugars under control.

Quite a few people I know have these symptoms post a Covid infection.

Long shot but worth considering

Ah thanks @ImPickingUpBadVibrations, I mainly just want to be able to function normally for my kids. You must have felt truly awful with all that going on, poor you! At least the fatigue is sorted.

I still think with all the various different issues in different body systems (you've mentioned at least neurological, skin, digestive and circulatory) you might want to look at autoimmune / immune disorder type conditions. I believe hyperparathyroidism can also be associated with these too. B12 is a good shout too to double check, I was told if b12 is low you would also likely have high MCH/MCV (red blood cell size) values on your complete blood count (mine was low so not b12 for me), maybe you could check that if you have access to your results?

The other thing to consider is whether there was any potential triggering event, for example mine started just after a cold/virus thing and 5 months after having a baby (although looking back some symptoms have been there in mild form for much longer I just didn't pay attention to them).

The problem I have found with the GP and specialists i have seen so far is that they will focus on one symptom/cluster of symptoms and try to investigate or treat that but with lupus (and other inflammatory or immune conditions) you could have say hypothyroidism plus anaemia plus myalgia plus sjorgen's syndrome (or many other combinations) and investigating/treating one at a time is very slow and ineffective as opposed to seeing the big picture! I haven't managed to overcome that one yet, not helped by tiny children and a pandemic limiting my ability to spend hours in doctors waiting rooms.

I hope you find a solution soon. One thing my (doctor) sibling said to me when I was stressing about degenerative neurological conditions was to keep an eye on function, ie could I still do buttons, undo jars etc, was I stumbling or tripping more often. If not and no noticeable progression she was less concerned about there being an urgent or irreversible issue especially after the clean mri, don't know if that helps with your worries. Keep pushing for the neurology referral though!

@DianaT1969 thank you!

@cricketmum84 I have. All normal there too. I’m pleased you have a diagnosis but sorry to hear you have been suffering. I hope it all gets better for you x

@stayathomegardener my symptoms pre date covid and I’ve had a negative antibody test x

@potatoesofdefiance I completely agree with you. Googling lupus and I’m going to ask for an ANA test to rule it out. I have the butterfly rash (but always have, I just assumed it was my skin type, red and blotchy. Been told in the past its very mild rosacea which it very well good be). I also have the petechiae all over, tingling, acid reflux and constipation. I get heart palpitations too. They’re awful for months and then disappear. I also had sore ankles for a while but thought that was my calcium problems but maybe not. It’s definitely worth an ask.

MCV were all normal. The only real issue with my bloods now is persistently low vitamin D and a reduction in ferritin for no obvious reason (but not anaemic).

You have been really helpful in making me look at pushing for more.

It isn't your GP's place to rule out MS. I have symmetrical pins and needles, tingles etc so it doesn't have to be one sided. Also you could have spinal lesions. A clear MRI doesn't completely rule out MS. There are other diagnostic tests for it.
I'd push for a neurology referral as much as you can. Good luck.

@FrankieDettol thank you. I will definitely give them a call and see what the next steps are, if they want more bloods first or just a referral. I mean it’s going to take forever to speak to neuro but it’s definitely time to find out what’s going on.

Thank you for your advice. I hope you are ok x

Hello @ImPickingUpBadVibrations - how are you doing now? I'm awake due to internal tremors and just found your thread.