THANKYOU so much : Finally thankyou... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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THANKYOU so much

Derrian
Derrian

Finally thankyou people who know where I'm coming from .the worst thing that is so difficult is having toilet issues every day with no warning bowel and bladder. It freezes me to the spot unable to move without soiling my self so embarrassing o don't won't to go out around people . It happens when I'm in too. And I disassociate for long and short periods . I can mess up my house and be shocked because I'm not aware at the time. I struggle to concentrate I sleep better after being diagnosed with sleep apnea. But I still get totally fatigued out of the blue. It is HARD living with this but helps to know I'm not alone x

4 Replies
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You’re definitely not alone. I went through a long flare where my bowels were completely unpredictable, it sucks so much. Hang in there.

Hi,

I read your post the other day and saw your photo's but due to a hospital appointment I couldn't reply. You have obvious;y had some serious stroke issues but what alarms is that it seem's nobody has thought of testing you for anti-phospholipid syndrome ! ( Sticky blood )

Please correct me if this has been ruled out if not I would insist in being tested. Sticky blood Hughes site is on the drop down on here if you need more information on the condition and the correct testing which is a must. You are amongst friends on here and if we can guide you in the right direction we will. Do not be fobbed off you are very unwell and the FND label in my view does not add up in your case.

I am saddened to hear of your plight and wondered if a referral to a gynecologist might help you. I have similar problem but not as severe and recently saw a gynecologist who has put me forward for something called "percutaneous tibial nerve stimulation" which will start next month.

From my understanding electrodes are attached to the ankles that stimulate the nerves to the bladder ! I know the freezing on the spot especially when I get out of my bed so anything is worth a try.

Google it I believe it to be a newish treatment.

From what the consultant explained to me it is done over a 12 week course. This treatment might be of help to you and who knows we might regain a bit of our life back. Best wishes and warm hugs your not alone. X

Derrian
Derrian
in reply to Jillymo

THANKYOU friend . I have protine C deficiency which was diagnosed when I lost my 4th baby .I have had DVTs and 2 pulmonary embalisums also . My blood in its own state is very thick.

This has always been the doctors go to diagnosis. So I was admitted and treat for TIAs/strokes my face does rectifie but it can happen multiple times in a day and for different periods. But it was confirmed I had a stroke in 2001. I struggle daily and don't trust doctors anymore. I won't ring 999 anymore for them to say it is in my mind . But one day it will be another real stroke . Hopefully sooner rather than later. X

Jillymo
Jillymo
in reply to Derrian

I know that feeling only to well because I am reluctant to call the emergency services to ! My daughter in-law has protien C dificiency which they discovered after she had a clot. Have you been tested for Hughes Syndrome ? If not insist your tested to rule it out.

I have had TIA's and a recent assumed stroke......dont you just put your faith in them when they assume three months after the event ?

The functional overlay thing just adds insult to injury.

I am also struggling but I have an appointment at Guys this Friday and hope they can shed some light on what is going on. It is sad when you have to travel all the way to London because local Drs havn't a clue.

Sounds as if you have given up and not getting the help you specialised care you desperately need. Where in the country are you ?

Private message me if you wish. Xx

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