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Family members playing doctor! I know they mean well but...

(18 Posts)
MummyJemz Mon 17-Feb-14 23:38:20

I have recently been experiencing pains, weakness and strange sensations in my left arm, leg, face and in my back as well as occasional pressing head pain. After a neurological examination by my gp showed Left Side weakness I have been referred for an MRI. No appointment through yet (not sure how long referral takes, can anyone shed any light??)

In the meantime I am trying my hardest not to search my symptoms online so that I don't panic myself unnecessarily. However everyone else seems to be diagnosing me and I know its because they care but its stressing me out! My Mother in law says I've had a stroke, my husband thinks its a trapped nerve and my Mum keeps coming up with all sorts of things and telling me I look ill and need to go to A&E!

I am so fed up, just want to have some answers... sorry for the rant, just need to vent...

Im totoally with you!! I've recently suffered with severe tiredness and after a couple of trips to the dr, some blood tests and some pills its been easily remedied. But not before my mum told me that I had M.E or CFS. Apparently she knows better than the dr

I hope the scan shows whats wrong and its easily sorted. There is any multitude of things it can be. Referral times vary from hospital to hospital but won't be any more than 4 or 5 weeks I shouldn't think

ScentedScandal Mon 17-Feb-14 23:55:27

I dont mention anything to my parents anymore. We always end up talking about their (incredibly long) list of ailments. Once my mum gets going on 'I would have thought..' I glaze over. Hope you feel better and get proper answers soon MJ.

GreggsOnLegs Mon 17-Feb-14 23:57:25

I had those symptoms exactly! And the same family concerns. Two mri scans (one nhs one private), various hospital trips to see neurologist at private hospital and nhs hospital even though it was the same person! 3 months off sick from work.
Now 5 years down the line and I'm still no closer to finding out what caused my problems then. It just started to fade then eventually went by itself but occasionally still comes back momentarily. Very weird.
I waited about a week for private mri and around 6 weeks for nhs mri.

MummyJemz Tue 18-Feb-14 00:23:30

Thank you for your replies. I feel mean for moaning as I adore my family but they are making me worry more! Hopefully I'll get sorted soon :-)

LeapingOverTheWall Wed 19-Feb-14 21:37:22

I did a double take reading the OP in case I'd managed to nc without realising......

I have everything you have (except the head pain), and was also not googling - but my neuro referral eventually (after complications involving hospitals not accepting choose and book and requiring an actual referral letter which the GP didn't do as she thought it was via choose and book) came through in a couple of weeks (was some chasing behind the scenes though). MRI was done a week later, now just have to wait for the follow up appointment which was booked for 6 weeks to allow time to get the MRI done.

I know in my case it's not a stroke (as first GP initially sent me to the hospital to rule that out), neuro wanted blood tests done for Lyme disease and B12 deficiency as well as MRI, but didn't feel his immediate diagnosis would be something neurological. I'm not entirely reassured as he didn't test my balance with eyes closed (I fall backwards) and can't do the "drunk heel to toe" walk with my eyes closed, both of which indicate a neuro issue, but then I did spend about 5 minutes of my appointment crying and snivelling blush as it was the first time I'd said out loud all the varying things that are wrong with me. I just have to trust that if there is anything, the MRI will show it up, and then I can deal with it.

MRI referrals seem to be weird - there are lots of private companies which the NHS seems to subcontract to if they're too busy themselves (as happened to me) so you can get seen really quickly, unlike other scans.

januaryjojo Wed 19-Feb-14 21:47:37

With MRIs it depends what the referee wrote on the form re.urgency.

If they put urgent it has to be within two weeks.
If not, within six weeks.

But I'm having a similar issue with my family re. My DD. hmm

MummyJemz Thu 20-Feb-14 09:49:36

Let me know if you get any answers LeapingOverTheWall. I've still not heard anything regarding an MRI appointment so I'm guessing its not classed as urgent. Feel shocking today though and nearly passed out in bathroom during night. DH to tge rescue bless him!

Januaryjojo, I'm just going to keep telling myself that family mean well and maybe we'd be the same if it was someone else :-/ Is your DD having similar problems? Hope she gets sorted soon.

januaryjojo Thu 20-Feb-14 15:03:30

Hi mummy (that's a bit weird!!!)

DD had a suspect finding at an opticians appt. we were rushed all over the shop, ending back at our local AAU unit having ct scans done, now they want MRI doing, earliest appt is middle of March!!!

So I figure not that serious, but who knows ??

With a previous issue with her, urgent referral for MRI had to be within 2 weeks, this time they MRI unit said they only have to offer an appt with 6 weeks, so assume cons didn't out urgent on the form!!. he was an arse anyway, so who knows!

MummyJemz Thu 20-Feb-14 20:28:31

Oh bless your DD januaryjojo! How old is she? I think the waiting times are disgusting, I know we're lucky to have a free NHS but waiting times are to do with bad organisation. Six weeks is too long when people are suffering and worrying (and families are diagnosing!) angry

And yes, mummyjemz probably a bad choice of user ID. Its a bit weird being addressed as mummy by anyone other than my kids blush

januaryjojo Thu 20-Feb-14 21:30:53

DD is 16.

Original issue, 18 months ago, (a ganglioneuroma ) was found by us by chance, that MRI was done as urgent and like I say had to be within 2 weeks.

This time it's possibly a brain issue, so it's a brain MRI we're waiting on.

So of course family my mother is going overboard, panicking and saying the MRI isn't soon enough, complain blah blah blah.....!

MummyJemz Fri 21-Feb-14 17:49:40

My so called 'urgent' referral was not sent through properly by the GP surgery so will now have to wait even longer!! sad

januaryjojo Fri 21-Feb-14 19:14:41

jemz
Try ringing the MRI dept directly and asking about the cancellations list.

I've put my DD on ours and they said they'll ring in a morning for an afternoon space if one comes up.

Would you be able to do something like that?

Has the new referral been marked urgent do you know? If not I think mid ask the referring dr to ring and do that.

MummyJemz Fri 21-Feb-14 20:21:28

Apparantly they will ring me on Monday to book my appointment in. She said I should be able to book for around 3 weeks time (and yes this is urgent! Non urgent are apparently waiting up to 20 weeks in our area!!) I could cry! Thank goodness I rang to ask about it today otherwise they wouldn't have realised. Sorry to go on, just getting fed up. I will ring the department too and ask about cancellations. Thankfully I have a very supportive workplace so could leave early!

Thank you january. And I hope your DD gets her scan very soon and that all is well with her. thanks

LeapingOverTheWall Tue 25-Feb-14 10:50:53

did you get your appointment mummy?

I chased up my blood test results via the GPs surgery yesterday and i don't have Lyme disease (unsurprisingly) and my B12 levels are 324 which I think is on the low side of normal. Just got to wait till the 17th March to see what the neuro says about my MRI, and if the B12 is contributing.

MummyJemz Tue 25-Feb-14 22:53:03

Hi Leaping, How are you feeling? Are your symptoms still the same? Yes, got an appointment but not until the 14th March. Good Luck with your results!

januaryjojo Sat 15-Mar-14 21:32:23

Hey jemz

How'd you get on with your MRI?

Do you have a follow up appt?

DDS had her brain scan done today, have to ring Tuesday to find out what they plan to do next, whether it's a discharge or if they found something etc.

LeapingOverTheWall Mon 17-Mar-14 15:25:43

How did it go Mummyjemz? I found mine surprisingly relaxing, it really didn't seem like 45 minutes at all. And have your symptoms eased at all?

Mine have settled down into lack of balance when it's dark/I can't see, my left hip does a weird circular movement if I walk after sitting down for a while, and my left toes seem to stick to the ground when I walk, so I feel like I'm pawing the ground with that foot. Plus the general brainfog, tiredness and permanently feeling a bit drunk, and getting stuck on words as though my brain is "buffering" like when you watch something on iplayer - if i wait it out (few seconds) the word comes to me, but it makes for uncomfortable conversations with non close family or friends.

But, appointment with consultant later, so maybe I'll find out what's wrong. Worst case scenario would be (I think) "MRI is clear, it must be down to stress" because although I know in my head that stress can have physical symptoms he heart says "making it all up" sad. Plus DH is being very head in the sand about everything and leaving me to get on with things, when I could just do with a sympathetic cuddle and "there there" sad. He'd be a lot better with something with a name.

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