Dd has a new symptom to add to her weird list of symptoms. Any ideas?

[VivaLeBeaver]

She’s 19yo. Confirmed coeliac but i suspect something else is going on. Her gastro consultant said she needs a referral to someone other than gastro. She has an appt with i think rheumatology in July.

Continues with abdo pain, diahorrhea and blood from her back passage.
She’s strictly gluten free and her bloods show she’s not consuming gluten.
She’s had half a colonoscopy but couldn’t tolerate it and had a panic attack before her mri so gastro discharged her.

She sometimes has weird episodes where she has hot flushes and passes out. She says her heart is racing when she has an episode.

She says she feels,weak and nauseous most of the time.

Her feet are numb. First one foot, a few toes at a time, then the other. Happened over a period of a few weeks and she says she has no feeling in either foot for months now. Like they’re notnthere. however she walks Around ok.

She’s just said it’s happened in a finger. She says she had a searing pain in her finger, and then totally numb. Which is what she says happened to her feet.

Is it worth ringing the gp tomorrow or just wait until july? Which might not even go ahead?

Wow that's some list.
My doctor's surgery are sending me multiple texts about everything.
I think you should try and get an appointment via phone

Has she ever been assessed for FND (functional neurological disorder)?

I really have no idea about her individually but some of those things sound like a severe B12 deficiency. Has she been tested - if so, is she at least somewhere near the middle of the range.

I would say if she hasn't been tested it would definitely be worth getting it done privately as, if it is, neurological damage can progress to be permanent. As she has ceoliac disease she will not be absorbing B vitamins - or others - well, so it is well worth looking into but the NHS (even outwith current situation) is pretty poor in this area.

I'm no doctor but it sounds neurological.

Her b12 level was ok a few months ago.

Not heard of that functional neuro thing. Will google it now, thanks.

Ok, just googled.

One symptom is gait disorder. She walks on her tiptoes all the time. Has been doing this for over a year.

She can walk normally, so if I tell her to it’s like she realises she’s on tiptoes and walks normally for a few minutes and then back on tiptoes again.

The BBC documentary Hospital has a recent episode on FND — think it’s episode 7. It’s still on iPlayer.

I have all these symptoms. Its been put down to fibromyalgia. I have had loads of tests.

Thanks, will have a look at iplayer.

@BlobbaGob. What sort of specialist diagnosed you in the end? Is the diagnosis just one of elimination? Can’t find anything else wrong with you so must be fibromyalgia?

Sounds like it could be FND to me, I have some similar symptoms. FND has some positive diagnostic tests, so it’s not always process of elimination. Look at www.neurosymptoms.org/ for more info - it’s a website written by a leading consultant from UK. Good luck finding answers.

I have most of those symptoms and have erhlos danlos.

My hands and feet go blue with changes in temperature and usually lose blood supply quickly (numb or tingling when sitting), I have gastro issues and have had a colonoscopy and gastroscope and no known cause (this was before the erhlos danlos was diagnosed)

I have a high heart rate, it will be 65 at rest but the second I stand up it shoots to over 120 and stay there until I sit back down. This means I usually feel dizzy or faint when I stand as well (heart rate increases as blood pressure decreases)

In my hands and feet the numbness is transient however but my mums doesn’t. but the other symptoms sound familiar to me. It may be neurological but it may be worth looking at other conditions too and erhlos danlos can pass as many other things before diagnosis (I had ibs, raynauds, tension headaches, pancreas issues etc until they found out actually it was all part of the erhlos danlos)

I mentioned Ehlos danos as a possible diagnosis when we were last at the GP. He said he wasn’t sure but that’s when he did the referral to the rheumatologist.

Thanks for the link psed. That’s certainly something I’ll ask the specialist about when we see them.