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Author Topic: Anyone good at deciphering a long list of weird symptoms?  (Read 5668 times)

Elliemay

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Hello, whinging Winnie here again!!

Im still really in a bad way every single day despite doing all the mindfulness, positive thinking, distraction etc Herbalist is helping somewhat but lost faith in gps.

I cant seem to get across to professionals just how severe my symptoms are.  In an ideal world I would like to know what is causing at least one of the symptoms so I could target it.

Some of you here are brilliant at knowing what causes strange symptoms.  Im totally lost.


I know I have anxiety, ive had it 20 years but never felt this wreched. Apart from during a fake menopause from zolodex for endometriosis where I had bad anxiety and depression.   I know im depressed now but I think the depression comes from feeling physically ill for so long with little relief.

Im 6 years post meno
I hardly sleep, I have nerve pain and tingling and seemingly constant fever and chills, I feel like someone has me in a wrestling hold around the middle, wake up with joint aches, im feeling nauseous but haven't been sick, im trembling a lot and have a cringey feeling almost like I imagine the drug withdrawal scene in trainspotting. Like my muscles are being wrung out.  It feels like my body is crying out for some vitamin/hormone or something but I don't know what. Ive also mostly lost my sense of smell but some smells are heightened. An oral consultant said it was menopause.

My arms and legs have recently felt weak and shaky intermittently. Again anxiety seems the main culprit but I have never had that in 20 years of having anxiety!
I do have vaginal atrophy, untreated as  it's last on the list
I get panic attacks but at least I know what they are! Can you overdose on CBT?? Cause I think im in danger of that!

Neurologist said everything is ok. I do have a few small brain lesions but been told to ignore them.

Im at the end of the road with gp. Im going through the motions of life not knowing how im even stood upright feeling so bad! I have a meds phobia but would consider trying something after ive given the herbal meds a good go. But what would I try? Hrt or anti-anxiety meds?

As mentioned on other threads I have a mostly painless chronic abcess under a tooth crown. It bursts every couple if days and is disgusting. Ive wondered whether this contributes but cant afford to have it fixed. I did end up in a&e a few weeks ago in desperation but they said it was anxiety and no systemic infection  from the tooth or urine infection. He told me to get checked for STIs! :-/

I buckle and see gp every few months. I have been treated like a hypochondriac several times when actually the opposite is true. Im very good at hiding symptoms and do some very tough things feeling this way. Im very positive (honest!) And usually determined to override feeling ill to do what I want but this is absolutely horrendous. No let up.

This severity is defo meno related but as mentioned,
Im 6 years post meno now and scared that it wont get any better.

Does anyone have the faintest idea what is going on?  :-/
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Annie0710

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #1 on: May 20, 2017, 07:57:37 AM »

Obviously meno is one thing that's hit you but shaking legs and the feeling of being squeezed round the tummy screams MS to me plus you mention a brain lesion ?

Is it possible to see a different neurologist to categorically get it ruled out ? Have you looked up the symptoms of it? I don't want to worry you obviously but having had symptoms and a ? of a different autoimmune diagnosis myself similar to MS I would want to know

Hope you get some answers xxx
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Elliemay

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #2 on: May 20, 2017, 08:04:45 AM »

Thanks Annie, I had considered MS but I darent even mention it to the GP after being told to "Google health anxiety" and having a prescription for citalompram literally thrown at me!

The brain scan results said the lesions could be normal aging, cerebrovascular events or demyelination which as we know is MS. It said it needed clinical correlation...but that's where any investigations stopped :-/ largest lesion is 6mm.

If these symptoms are also post menopausal ones I would rather it be that. Am truly at the end of my tether and I dont think that one person around me realises how ill I feel.

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Annie0710

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #3 on: May 20, 2017, 08:26:20 AM »

Maybe a lumbar puncture ?
I know from having read up on my wueried diagnosis of Myasthenia Gravis that MS and MG can take a few years to diagnose

Have you had your B12 levels checked and investigated (googled) all your blood tests ? B12 deficiency can appear similar to MS with lesions and demyelination xx
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Elliemay

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #4 on: May 20, 2017, 08:34:17 AM »

Yes all bloods come back fine. Maybe I should push for another neurologist but im fed up of the hostile attitude ive had from some gps.
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Elliemay

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #5 on: May 20, 2017, 09:01:48 AM »

Thank you. It really helps to be able to talk about it. I only ever mention it to friends when it is really overwhelming. Now I feel I cant because theyve heard it enough. Honestly nobody gets how strong these symptoms are and how tiring it is hiding them.

I don't know the levels of b12. I will try and find out.
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Annie0710

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #6 on: May 20, 2017, 09:31:04 AM »

Are you On the online system at your surgery ? Mine are all listed on there so now I screen shot every blood test and analyse the results for my own piece of mind

Other than that it is your right to get printed copies of all blood tests.  My B12 was 197, their range is 211-911 but they said it wasn't low enough but gave me tablets which then took me to 219, so they said all was good.  It's really not, as symptoms can develop up to about level 500 I think x
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CLKD

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #7 on: May 20, 2017, 01:52:43 PM »

If you don't get treatment for the continual abscess then your body will continue to feel wretched.  First things first!  Abscess is a form of poisoning so your body is probably putting out white blood cells to counteract the effects. Add to that probably not eating properly due to painful mouth and bad taste as the abscess drains?

You have seen a Neurologist so that rules out that worry.  Get thee to a Dentist!!!! We should not blame menopause for all our ills.
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Maryjane

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #8 on: May 20, 2017, 02:09:42 PM »

Ellie May .....I have been to a B12 lecture by specialists anyhirng inder 500 is deficient , NEVER just take it's fine get the results and then come back with them, my husband was on a stroke ward , admitted to a&e threee times getting sicker and sicker , I took charge and it was B12 , problem is it's now done some lasting damage , but he was heading more than likely for a wheel chair but he is now back at the gym 3 times a week.

He was told it was " stress" basically....thebopenkkg lines are you stressed YES because you won't listen to me , feel like I have MS so YES I'm stressed , B12 deficiency has very many overlaps to MS.
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Annie0710

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #9 on: May 20, 2017, 02:36:56 PM »

Ah so that's 2 of us now thinking B12d/ms

Get your results printed and put them here x
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Wrensong

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #10 on: May 20, 2017, 03:08:14 PM »

Elliemay, I agree with the other ladies about the importance of good B12 levels & that a low result but within the ref range, can still give rise to symptoms.  These can be very wide ranging and similar to some occurring in other neurological conditions.  A family member ended up hospitalised & in a wheelchair (temporarily) because pernicious anaemia went undiagnosed for so long, stroke & MS having already been suggested by medics as other possibilities.  Sadly, there has been permanent damage as a result. 

It astonishes me that there seems to be so much ignorance among medics about symptoms and that although I've frequently read that mid-range levels are the lowest to aim for, this doesn't seem widely accepted/known.  I would certainly try to find out your result & if low but within range & injections/infusions are not on offer, ask your GP if you can try B12 tablets (buy in any health food shop if they won't prescribe) & to be retested after a few weeks to see whether levels are rising, indicating you you are able to absorb it by mouth.  I do hope you manage to get some help with this, it is utterly miserable having a range of difficult symptoms & little support to manage them.
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CLKD

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #11 on: May 20, 2017, 03:09:18 PM »

Vit.B12 can be dangerous when taken with some medications so do ask a Pharmacist for advice B4 you even consider trying them. 
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Wrensong

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #12 on: May 20, 2017, 03:15:08 PM »

Good point, thank you CLKD  :) - wouldn't recommend trying without GP involvement. 
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CLKD

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #13 on: May 20, 2017, 03:16:49 PM »

... as can, if taken with VitB12, broad beans, banana skins, some Italian wines (name escapes me), cheese in any form, Marmite, Bovril ........ particularly if mixed with some anti-depressant medication which can prove fatal  :-\

ALWAYS ask a pharmacist, then if necessary buy from a 'health food' shop (what ever that classifies as) because they in my experience, have no experience but are told to sell what is on the shelf  ::)

edited to make myself clearer ....
« Last Edit: May 20, 2017, 04:06:21 PM by CLKD »
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Annie0710

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Re: Anyone good at deciphering a long list of weird symptoms?
« Reply #14 on: May 20, 2017, 04:05:01 PM »

Vit.B12 can be dangerous when taken with some medications so do ask a Pharmacist for advice B4 you even consider trying them.

Are you sure ? I'm not questioning you I'm genuinely asking as I've never heard it.  Plus you can't overdose on B12 as you pee out excess but you do need your other cofactors at good levels to get the B12 doing its job

B12 tablets are fine if the deficiency is diet related, if not then injections are needed
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