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[happyal]

Dear all,
Can anyone steer me in the right direction and alleviate my worry please?  Over the past 2 years I have been experiencing joint pain all over my body. Different joints and different times so non localised. This came and went but the frequency is increasing. My bigger concern is numbness. Again this started over 2 years ago with pins and needles in my arm, mainly in the morning. It has progressed over the last 2 months to almost every night, sometimes both arms and now legs too. ALso having arm numbness during the day which is really worrying me. Bloods showing 'normal' although one test a few months ago suggested I was heading towards menopause but last test was fine. I had an MRI scan last year which was clear - neurologist suggested by body was reacting to the mirena coil - he sees a lot of women that present with neurological symptoms as a result of the synthetic hormone. ( I have since had the coil removed and generally feel much better without it) He also said perhaps peri menopause.
Seeing the doc next week to discuss my latest round of clear blood results. Does anyone have any suggestions as to what I can ask him to investigate now? I feel that as the bloods are clear they are dismissing that I need any further investigation. Like everyone else I have convinced myself I have everything from MS, to bone cancer and recently decided I must have had a stroke at some point!!!
I am 42, generally fit, eat a varied diet but drink more wine than I should. I feel like a complete nuisance at the doctors and get myself agitated before I go. Normally I can express myself well and am articulate but I turn into a bumbling fool at the docs.
Currently my main symptoms are: dry eyes and mouth, palpitations ( not too bad at the moment), eye floaters, outrageously bad memory,  incredibly cold hands and feet, joint pain, dizziness, tingling tongue, digestive problems etc etc.      Any suggestions would be most welcome. Best wishes everyone.

[happyal]

Thank you Sparkle! Yes confirmation that I am not in fact losing my mind would be hugely reassuring - and go a long way to helping. Isn't it hilarious knowing other people are as poorly/frustrated as you makes you feel better.
When I see my GP I'll ask if those tests formed part of the latest bloods.
Thanks again,
A x

[happyal]

  ;DHonestly Sparkle, I am like something out of 'It's a Knockout,' In the morning, trying to get out of bed while my arms wake up. I swear my OH wonders what the hell I am doing in the night - like sharing a bed with a bag of snakes.
It's as well we can laugh x

[Hurdity]

Hi happyal

 

The only thing you haven't said is what your periods are doing - as this would determine whether you are entering the peri-menopausal transition? Obviously when you had the Mirena your cycle would not have been normal and probably your periods would have stopped - but this would not be an indication of menopause - just that it stops bleeding usually. Have you had regular periods since stopping the Mirena and how long has it been out?

The other indication would be flushes and sweats - and you don't mention these. Although there are many symptoms of menopause the two together cycle and flushes are indicative - but if you are quite young sometimes blood tests can alos help add to the picture.

You say blood tests are clear - but what has been measured - sex hormones eg FSH or oestrogen? Thyroid hormones? Presumably you had a whole variety done because of the neurological symptoms? Feeling cold can be due to underactive thyroid but you would also be experiencing fatigue and weight gain. I would ask at the docs for a copy of your blood tests at least - it's not helpful just to be told normal ( although reassuring!). If you say MS has been completely ruled out then that is a relief.

Joint pains are a symptom of menopause ( and thyroid deficiency) so has the doc suggested a low dose HRT perhaps to see if it can make a difference? Have the neurological symptoms gone now that the Mirena has been removed? Hope you don't mind all the questions but it's tricky if the picture isn't clear and that's maybe why the docs haven't suggested treatment 

Hope you get some answers.

Hurdity x

[happyal]

Hi all,

The coil came out last August and since then I have returned to a pretty normal 28 day cycle, albeit varying considerably in length and flow. 
Since the coil has come out my mood and anxiety has improved considerably but I am still getting the neurological symptoms, migraine with aura, numbness, visual disturbances etc. The MRI was over a year ago but thankfully clear. I do need to ask GP exactly what bloods have been checked as the doc says a 'full blood count' but I'm not sure what that entails

Fatigue is a real issue, not every day but a lot of them, weight gain is not a problem. I think part of the diagnosis problem is when the doc says the bloods are clear, I say ok (relieved) and leave it at that until things get progressively worse. I then go back with whatever symptoms are presenting most  at that time and the doc says we'll check your bloods again and I don't know if anyone is joining the dots.

I write everything down before I go but to be honest I rarely get started before the GP moves on to blood test chat. I am getting tested for coeliac too. I have been gluten free for over a year as I know I have a sensitivity but I have to reintroduce gluten to my diet and then get tested. Will be rather unpleasant as the gut problems are horrendous but they are keen to rule coeliac in or out. While that is welcome, I am pretty certain that wouldn't be causing all of my symptoms, particularly as I am pretty careful to avoid gluten.

I would quite happily pay to see specialists - but I have no clue who I should see - neurologist/endocrinologist/dietician??? The mind boggles.

No - GP hasn't suggested anything at all.
 
Thanks for listening once again.

A

[Hurdity]

Hi again - definitely ask for copies of the bloods - and see if your vitamin and iron levels were done also as sparkle suggests. Mind you if these all came back as normal then it can't be this. It is unlikely to be thyroid deficiency ( the fatigue) if you do not have a problem with weight. Testosterone deficiency can cause fatigue - but usually from what I understand this would not normally occur in the absence of menopausal symptoms and especially as you are young - and this hormone generally declines fairly steadily with age.

If your doc doesn't have any other suggestions and your FSH level is not raised, then perhaps you can ask for another blood test in 4-6 weeks time - since you have unexplained symptoms, and your periods are very variable - this could indicate you are nearing the peri-menopausal transition - when cycle length begins to vary.

Sorry I can't help further but sounds like you do not need some sort of specialist input. If you are gluten intolerant then this is a place to start.

Let us know what the doc says about your latest blood tests and remember to ask for a copy (and your previous ones if you can - even if you have to pay for the printing!).

Hurdity x

[happyal]

Thanks so much Hurdity, your wisdom is appreciated as always. I'll be back in touch when I get the results x

[Dorothy]

I started getting symptoms like yours at 35, and like you, the length and heaviness of my flow fluctuated far more than the actual timing between bleeds.  Also, I didn't get typical hot flushes at that point, mine were more feeling a bit warm in the face or like I might be running a slight temperature.  It got a lot worse age 38 and I was finally diagnosed at 39 - the one advantage of taking four years to get a diagnosis was that early menopause was a much 'better' option than all the weird and wonderful rare diseases I'd been worried I had during the previous four years!!! 

It's a good idea to make sure your symptoms aren't being caused by something else such as a food intolerance, and obviously rule out anything more serious (very unlikely), but try not to worry too much while you are going through this process.  All your symptoms are well within 'normal' limits for early peri, so while it is wise to investigate them further, there's no need to panic!

Do you know if your mother or other close relatives had an early menopause?  You are much more likely to have one if it runs in the family.