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'Female of a certain age'

New diagnosis and before diagnosis
#1

My husband has suggested that I post …I’m a white female, mum to three beautiful boys 5 years, 3 years, and 5 months. I’m 37 years old currently exclusively breast feeding – History –migraine with aura. Hyper mobile wrists. Always tired. All of this (and more) stopped when i went gluten free (intolerant not celiac) 3 years ago after issues with my bowel – I felt Amazing up until…

20 September 2015, 7 weeks after the birth of my baby, I had a period of persistent pins and needles in my face & scalp, my feet up my legs and my hands – the sensations ranged from soft tingles (almost nice) to intensely burning hot prickles – at its worst my skin felt itchy. It was (and continues to be) worse when I get hot or very cold(in the bath my feet/legs buzz). I also had numb spots on the tip of my nose, tongue, roof of mouth and lip (whilst in physically different places they felt like they were in the same place on each).

I have a weakness (does not stop me doing anything I just have to work harder/muscles get tired quicker) on left side. I struggle to lift my baby I don’t feel strong enough. During this period my concentration and ability to do the most basic task were extremely poor – I would forget what I was talking about mid sentence. Other times I knew what I wanted to say but it would just come out all wrong.

Twice whilst sitting on the floor leaning forward to see to my baby I have experienced an electrical light/buzz in my right thigh – for a few brief seconds I could feel the whole nerve light up. When the tingles were permanent, most of the time when I bent my head forwards the buzzing in my feet intensified. Also sometimes when I turn my head/twist my neck to the left my scalp buzzes.

Tingles became intermittent 7th October. On 27 October I felt like something had changed and not so tired/ as tingly.

GP did blood tests thyroid diabetes CBC and B12 all of which he said were normal and referred me to Neuro; Neuro did a very brief exam didn’t tell me results but noted some weakness on my left side (arm and leg) and referred me for brain neck and spine MRI. I have had an MRI (no contrast) which has come back clear, my Neuro recently summed up findings as ‘we did the mri to look for things like MS - its not MS its one of those things we wont ever find the cause of typical in females of your age’. He has referred me back to my GP.

I was taken aback when he gave me the results and only later have I started to question what he said. I have asked for a copy of my mri report (which the secretary said she will see if the consultant will let me have a copy - Im still waiting to see if I am going to get it). I appreciate I wont understand it – but I need to see something in writing.

After the mention of MS I have had a look at the symptoms and fear that the neck and heat thing may be Lhermittes coupled with Uthoffs.

I suppose my questions are –

Does the neck thing sound like Lhermittes? Has anybody experienced similar? Would it not show on a MRI or is it possible that this could be the beginnings of something not yet showing on an MRI? If so how long do I wait before going back? What questions should I be asking? Should my GP be looking to rule out other stuff? Does anybody feel that a lumber puncture would be beneficial? Should I just be accepting the ‘female of a certain age’ diagnosis? (bearing in mind that I am an old, new mummy again and my hormones may be up the wall…)

I appreciate the time it will have taken you to have read this and any responses made –

Thank you

Emma

#2

There are some doctor’s comments that really do deserve an ‘Everyday sexism’ nomination, aren’t there? Even if they’re right. Especially if they’re right! But seriously, what sort of a sorry substitute for a serious medical opinion is that?? I hope that you get more grown-up sense out of your GP.

Alison

#3

Thanks for your reply Alison - My thoughts exactly, I think the way he says it to others in the future needs tweaking somewhat. GP has already referred me up to musculoskeletal people for an assessment to look at my heavy legs and left side weakness, so I’ve got a little wait for that, I will wait for the letter and report from the Neuro before I go back to GP…there is no hurry…unfortunately whatever this is, it doesn’t seem to be going anywhere quickly.

Emma

1 Like
#4

37 and a woman of a certain age! For heaven`s sake! Which outdated victorian doctor school did he go to!!!

Even with thinking how un pc his statement was, I dont think we become women of a certain age, until we hit the menopause!!! Grrr! Stupid man!

Feeling tired is the norm for a mum of 3 young children, innit? But then you do say that your fatigue is more tingly like of late.

Yeh, some of your symptoms are MS like, but too many folk jump to MS too soon, methinks.

Methinks this as I was wrongly diagnosed with PPMS for a long time…because I presented clinically as very PPMS like…even tho the huge battery of tests I had came backnormal`.

There is obviously something not quite right, so speak to your GP again. Hopefully he/she will continue the investigation.

luv Pollxx

#5

Hi Poll, thank you for reply - I keep playing it over in my head and I’m angry I didn’t push for more information at the time.

Tired was the norm before I went gluten free 3 years ago - along with constant headaches, body aches, swollen joints (water retention) etc etc … cutting out gluten gave me a new life (but I am intolerant and react very badly now if I accidentally eat it) - literally I woke up one morning and didn’t hurt any more - I felt like I had rested in my sleep and was ready for the day…That continued until this all started in September. Yes the kids wear me out and I get tired, but this tired was different It was all consuming - its not as bad now but there was a definite period of about a month where I was done in.

To be honest I wish I’d never looked…and if had I been given more information I probably wouldn’t have…luckily the boys keep me very busy!

I will return to gp when I have received the reports…(if I receive the reports)…

Emma xox

#6

Whilst this sounds a very stupid/insensitive thing for a medical professional to say (not that that is unusual from what we see on here!) there does appear to be a fairly well documented history of women presenting with “vague” symptoms that are not understood by doctors and result in patients being shunted onto the “go away and see if it gets better on its own” pile.

Is this because women present the symptoms differently? Is it because a lot of doctors do not really acknowledge that there might be differences between male and female health other than the obvious reproductive bits? Is it even because some doctors look down upon women and think they are “moaning” or “weak” unless they have symptoms that are immediately obvious and diagnosable? Possibly.

The does appear to be anecdotal evidence of women being under diagnosed with autoimmune conditions which - as we all know - are difficult to diagnose and often manifest themselves initially as a collection of niggle-y things when the patient knows that something is just not right. A doctor might (wrongly) think is just the patient needing to “man-up” and get over it (Yes, I did use that phrase intentionally!)

Over the years I have had a number of medical problems and I have to say that although I have known a lot of brilliant doctors I have also known a good few who shouldn’t be allowed to treat anything more complicated than a pot plant! Present with something more complicated than a broken leg and you can run the risk of complete ignorance. Sometimes the most reassuring thing is when a doctor acknowledges his/her limitations - one of the most reassuring things my previous GP ever said to me when I was diagnosed with MS was “I will tell you now I have very little knowledge or experience of MS so this is going to be a learning journey for both of us and I will need your help all the way.”

#7

Thanks Boblatina - that is an interesting link - whilst Im sure he probably knew his stuff I must admit he has left me with more doubt in my mind than trust - He said ‘Well you brain scan is clear’ then left me hanging fearing his next words and was surprised when fear washed over my face… and followed up with ‘and so is the neck and spine’ … to then hear his non-diagnosis - I do think pot plants may be better emotionally equipped than I was to hear him…

I seemed to have picked up a sniffle - but every time I sneeze my body lights up with a buzzing zap - Its driving me nuts; its the same feeling I get when Im surprised or shocked (which seems to be happening a lot recently - not sure if its because im a little on edge) … I guess I will mention it to my gp… Am I right in assuming that it is probably related to whatever is going on?

x many thanks x

#8

Hi.

cant give any help with the symptoms as, like you, I’m stuck in limbo land without a scooby!

‘Woman of a certain age’ makes my blood boil, but I can see where he is coming from with it. I’m 48 (no idea how that happened!) and was told a few years ago that I am pre-menapausal. Unfortunately, the lead up to the menopause can produce symptoms that mimic ms - as if life isn’t difficult enough! Have a Google and you should find some info.

I was 42 (& my youngest a year old) when things started going wrong. 37 seems a bit too young for it, but it might be worth looking into. Pre menopause can go on for a long, long time - although in my case the problems lasted for a couple of years & then everything settled down again (super heavy periods every two weeks are truly hideous - sorry to the guys out there!)

good luck with it all

Paula

#9

Hi Paula thank you for your response - You know that had never occurred to me… have had a look and and not too sure, you see I keep coming back to the tingle/buzz in my head on its own and sometimes when I turn my head and the effects of heat and cold… Im stuck though because I’m breast feeding (I fed my other two until they were around 16 months), and I have no plan to stop - baba is only 5 months and blatantly refuses a bottle - From what I have read they cant test for peri menopause while Im still doing this - same reason Im not taking any medication at the minute - GP has been talking to me about Amitripilene and gabapentin (not sure of spellings?) and something else I cant remember - to help with the relentless tingling in my feet and legs - but wont prescribe due to feeding.

I will definitely bring it up with him though. Where are you up to? had any tests? limboland is a great description! Not knowing is hard, not that I particularly want it to ‘be’ something - I would be much happier if the symptoms would just do one!

Luck back to you hope you are feeling as good as possible :slight_smile:

Thank you all so much for speaking to me - I was really hesitant to post but everyone is so friendly - Thank you x

#10

I’m a bit behind you with tests etc. I’ve had a rollercoaster ride of bizarre symptoms since August. Finally got a neuro appointment through for November. He mentioned MS a few times during my appointment, but then said that it could be anyone of 400 things. He wants to start central and then look at peripheral, and decided to do nothing until I’ve had a brain/spine MRI and put me in for an urgent appointment. Unfortunately, the earliest ‘urgent’ appointment I could get was for end of Jan, so I haven’t even got as far as the MRI yet.

My breast feeding days are long gone (I really miss them!), but my GP wouldn’t prescribe anything as she said that we can’t assume anything. I thought we could assume that the ‘walking on glass’ pain, horrendous pins & needles, & leg slowly turning to ice in my right foot/leg was nerve pain as the neurologist is certain I have nerve damage, just not what is causing it, but my GP doesn’t want to know until I have a formal diagnosis.

I’m happy to say that most of my symptoms have eased off over Christmas, so I’m no longer exhausted and my mind seems to be working properly again. I seem to have been left with a numbish right fore-foot, and a weakish right leg.

I don’t want to be anything either, but unfortunately I know I’m something as I’ve had almost annual phases of bizarre symptoms since my late teens. I’ve always stuck my head in the sand because they went away & I was fine again, but this time it’s been much worse and I’ve not been able to ignore it all.

When it was at it’s worst in November, I suddenly realised that if things continued like it I’d have to give up work as I couldn’t drive or think straight. I dug out our life insurance and discovered that our critical illness cover is utter rubbish on the neurological front. It will cover me if it’s mnd, Parkinson’s or ms, but not if it’s any of the 400 other things it could be. I’m certain I don’t have either mnd or Parkinsons, so I’ve bizarrely found myself hoping it’s ms.

Anyway, fingers crossed for both of us!

Paula

#11

Paula your Neuro sounds so much more thorough than mine - like he will actually look further if the first lot of tests come back clear - although that is a long wait for an MRI.

Baby #3 was a massive surprise so I too had previously thought my breast feeding days were over - I mourned the loss when I stopped feeding #2 - So I am thrilled that I get to do it again I generally don’t take many pills (apart from through an 18 month stint of Thrush I couldn’t shift that stayed until about 5 months pregnant - touch wood that is staying away), however would gladly take something to ease the incessant tingle! But I wont forfeit feeding I figure I only have around 12 months left - and that will fly by. My GP is great and quite happy to treat my symptoms - I would be more than frustrated if I could and he wouldn’t. Ive been trying to put into words how the soles of my feet feel and you come very close - Going to keep thinking …the words will come eventually!

It is good news you are starting to feel a bit better - hopefully you will continue to improve x

Im pretty sure in my case work is easier than 3 boys (physically anyhow) although I really don’t want to go back (staying on maternity leave until July16 !!!) as its quite a stressful job.

Hopefully your MRI will provide the answer you’re looking for and get you out of forever wondering x take care x

#12

I figured I will keep this updated, in case this turns out to be something or nothing and others who experience similar can see where I end up…

I got the letter that says MRI all clear a couple of days ago - It felt better seeing it in black and white - and have rang to chase the report (which would have really come in handy for the musculoskeletal assessor I have seen this morning, as she could not access it on her pc as from a different nhs trust), as I still haven’t received it, to be told again they will ask Neuro for permission - really I don’t see the issue with my report being sent to me??!.. Although she was in a hurry (running late) she did a much more through assessment asked me questions and did a lot more reflexes, she spent a lot of time with me - flicking nails, sticks on feet and knocking reflex points - to me my left side seemed to react more to the hammers than the left - she also spent a lot of time flicking my middle finger on left and watching my hand. She thinks there is something off nerve wise on my left hand side and was surprised that Neuro hasn’t taken it further and/or referred me to pain mgmt - she is going to speak to my Neuro - and get copy of MRI and report - I had an X-ray of hy hips/pelvis/lower back because of the now excruciating -sleep preventing- pain - she said she will ring (probably in about 3 weeks) and will probably be referring me to a pain clinic and maybe physio… the wait continues…

#13

So I have received my letter for my follow up appointment at the end of February with musculoskeletal people - I have already rang asking for it to be brought forward if any cancellations - but been told no. I have also received my ‘clear’ MRI report this morning - So I have lesions described as Intraosseous Hemangiomas in upper thoracic spine - but not thought to have any clinical relevance ie not MS, minor degenerative disc disease of L4/5 and established degenerative disc disease in the lumbosacral joint L5/S1 which will be responsible for the lower back pain and back weakness and possibly the issue with the sciatic nerve in my left leg that bugs me… they noted that the nerve isnt compressed in any way. But nothing to pin the burning pins and needles on to.

My tingles are now not persistent which is good - I do feel like Im slowly getting over whatever the sensory issues where although I do still have issues with motivation at the minute …so next step for me I imagine is pain management and physio leading to exercise if I can get to a point where I don’t hurt.

Do people think that a nerve conduction test would achieve anything? and should I be asking any questions other than getting her assessment of my reflexes in writing??

x Emma x