Functional Nuerological Disorder

Dempo1 · 18-03-2023 10:34am #1

Hi All,

Just curious has an anyone out there ever been diagnosed with or even heard of Functional Nuerological Disorder.

After years of Tests, X-ray, MRI scans to find the source of Chronic pain, on one side from Pelvis Down I was reffered to a Nuerologist. I was astonished with a preliminary Diagnosis of FND.

My journey started with Graves Disease (Thyroid) , Chronic Joint pain, signs of Osteoporosis & Fatigue. Diabetes 2 Diagnosis and a complete Immune system collapse requiring Hospitalisation for 8 days in 2021, resulting in Liver Damage (I don't drink alcohol)

I'd honestly never heard of FND & I was given some material to read up, Nuerologist waiting for series of Blood tests to confirm but pretty confident of a Diagnosis for FND.

So would be interested to hear from anyone who's been Diagnosed or familiar with FND, it's quite rare.

https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder#:~:text=What%20is%20functional%20neurologic%20disorder,in%20how%20the%20brain%20functions.

Thanks in advance.

markmoto · 01-04-2023 1:44pm

Do not post in this thread again.

Grem

Dempo1 · 04-04-2023 9:11am

Thankfully I missed whatever was posted

banie01 · 06-04-2023 4:43pm

Hi Dempo

Sorry to hear of your medical woes and in particular the likely FND diagnosis.

I don't have any experience of the disorder myself and as such can't offer much in the way of advice on that front. Your own diagnosis is of interest to me on a selfish level though. I share a couple of co-morbidities with you Diabetes & joint pain in particular.

What caught my eye in your post was the location and nature of your chronic pain. I have an ongoing pain issue for the last 4yrs that has me fairly restricted and is blighting my life. So I know just how devastating chronic pain can be and in particular how much it limits one in their day to day.

I didn't want to let your post go unacknowledged. I do hope your Neurologist gets on top of this and that you get everything under control.

Dempo1 · 08-04-2023 8:19pm

https://www.boards.ie/discussion/comment/120448599#Comment_120448599

Thanks so much, I've followed your excellent contributions on the Diabetes Thread. I was blown away by the initial diagnosis, had never heard of it.

My troubles started with Graves disease (Thyroid) and whilst a manageable condition it's other issues it causes, such as High Cholesterol & Blood pressure that are permanent & eventually Diabetes.

The pain has been horrendous at times and lack of sleep a real problem. I was prescribed Pregablin recently & it's helping.

Thanks for the response, I was curious to see if anyone had heard of or has been diagnosed FND.

banie01 · 08-04-2023 8:34pm

Thanks for that kind reply, I appreciate it. I always find your own contributions particularly on the SW thread very helpful too.

Part and parcel of what caught my eye on your thread was the pain issue.

I have had a fairly severe pain issue since 2018. It has really placed limits on me and despite seeing multiple Dr's and urologists I am left treating the symptoms rather than the cause.

My provisional diagnosis is that it's an entrapment of the Ilioinguinal and hypergastric nerves. Sounds benign enough but it presents as pain from above and behind my left testicle and over my entire left side up to the kidney. I have had the misfortune of a kidney stone once, and this is worse. Doc has labelled it as renal colic.

The pain is worsened on activity even just being upright can trigger very severe pain.

I'm on a combo of Gabapentin, Duloxoteine and Amitriptyline as my regular meds with Oxycontin & Oxynorm for breakthrough or severe pain. I suppose I'm lucky enough in that the meds do offer some control of the pain and in particular the oxy for when it's at its worst.

I do also see an interventional radiologist for pain management via radio frequency nerve ablation. When that works, it gives a decent level of relief for 10/12 weeks. When it doesn't work, it still leaves me waiting months before the next session to preclude killing the nerve completely.

My advice on your FND would be to ensure that you get referred to your local pain management team. Also if you have Health insurance? See if you can get set up with an interventional radiologist. The range and variety of options available to block the pain at source could provide you some options for longer term relief.

The other thing that might help is finding if there are any support groups around for it.

Best of luck in getting on top of it

rickis tache · 27-04-2023 6:24pm

Hi Dempo1.

I was diagnosed with fnd just 2 months ago. Unlike you though my fnd is characterised by motor and vocal tics, much like tourettes. I jerk my head back, sometimes quite violently and can shout out but thankfully not swearing.

I was referred to a psychologist and am to begin CBT with someone with experience of FND but both are difficult to find readily available.

There is lots of various types of FND and this in itself makes it very difficult to diagnose. The suddenness of it materialising is quite a shock but I was told it could potentially be reversed somewhat with treatment.

Can't offer you any other advise unfortunately until I get some myself only that there are supports out there with the hope group on Facebook and such.

Best of luck.

Ricki

Dempo1 · 28-04-2023 7:25am

https://www.boards.ie/discussion/comment/120528865#Comment_120528865

Thanks Ricki for the response. It's extraordinary the range of issues that under FND. I wish you well in your Treatments going forward.

Functional Nuerological Disorder

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