Newly diagnosed

[laylagirl4]

Was newly diagnosed with FND ***5 days ago*** and not sure where to begin in dealing with this condition. The neurologist just basically said you don’t have MS but have FND. He gave me a script for a calcium channel blocker and walked me out of the exam room. Was left alone to go on line and look this condition up on my own. That was a nightmare!!! Left in limbo!! Any suggestions, advice, ideas or counsel would be greatly appreciated.

[Agnes78]

Pretty much my story, I was thinking of going to my gp to discuss the options.

[artmom]

Hi. I’m sorry - how unthinking of them. What tests did you have before the neurologist dx’d you? Any? I went to gp after dx and he’d not heard of fnd.

[laylagirl4 in reply to artmom]

I had various MRI’s with contrast other than the General neuro exam in the office. I am not surprised in the lack of knowledge that some medical providers have.

[artmom in reply to laylagirl4]

Someone told me other day gps are 12 years behind in medical knowledge! What are your symptoms, if you don’t mind me asking? Seems to me half the population will be diagnosed with fnd by the end of the year if we’re not careful!

[laylagirl4 in reply to artmom]

Let’s see.. pins and needles with burning on my extremities. Numbness, facial pain. Some cognitive issues eg: lack of focus, memory, speech. I have lack of coordination. Now in the last 72hrs I am developing back pain. I have never suffered from back pain in my life or joint pain. My hips kill!! 😞 and you?

[Mic67 in reply to laylagirl4]

Terrible that we are left like this isnt it. Are you in the UK, if so can you get your neurologists secretary or your GP to refer you to St George's in London?

[laylagirl4 in reply to Mic67]

I wish!! No..I am in the good ole USA. I am outside of BOSTON. Where I am finding very limited resources and practitioners that deal with this condition. 🤷🏻‍♀️

It seems to me that this condition is more re-known in the UK.

[Mic67 in reply to laylagirl4]

Yes we definitely have more up-to-date thinking - but this is confined to literally 3 or 4 centres. You can imagine the bottleneck in the system with everyone clamouring to see a handful of specialists. The waits are unreal.

[artmom in reply to Mic67]

Is it just because of dx that it suddenly seems A LOT of people have fnd?! Like when you want to be/get pregnant all you see are huge swollen bellies everywhere? Feeling a bit like an epidemic!!?!

[Mic67 in reply to artmom]

I agree. Quite chilling how many people seem to be landing bewildered in the FND facebook groups daily. A cynic might say that neurology has found the perfect way to put a stop to further investigations and indeed anything in the way of treatment. Something is not adding up.

[Cindy391 in reply to laylagirl4]

Hi. I was diagnosed in January this year. I was told I didn't have MS that I had FND. I was told too google it. That I would get referred for physiotherapy and to see a psychologist.

[artmom in reply to Cindy391]

On this page just below the last post (and in this place on every page) is the disclaimer that health unlocked does not replace the advice you receive from your doctor. Ha ha.

[laylagirl4 in reply to artmom]

Good one! 😆

[laylagirl4 in reply to Cindy391]

Ha!! I was told and I quote..”your brain is out of wack, you need to stop stressing”. Umm..yeah. My response...okay. 1) I will stop working 2) get rid of the kids 3) get rid of the dogs as well as the husband. Shut him down quick! Am still waiting for a neuropsych consult. Like you I had to google it.

[Mic67]

Love reading your replies.

I have been back and forth having my hips investigated over the last 3 years and long before my FND onset. They cant find anything other than 'global proximal weakness'..no structural cause.

The thing that got me the FND diagnosis is that I am unable to lift my legs or flex at the hip when lying down on my side, back or front. It looks like my legs are paralysed but then I can bend them and they move normally. So bizarre and I can see how this relates to nervous system dysfuction rather than structural issues. I see people with FND talk about 'flares' but I dont have flares, my legs have been like this since Feb 2018 with no change.

This symptom doesnt affect my life too much but my gait issues do. I think this hip weakness may well be affecting my gait, although I havent wanted to admit my walking problems are FND. My legs get stiff (spasticity) my toes turn in slightly now and I waddle like someone who has a hip issue. When I am resting after walking for a while, my calves and thighs ache deep inside the bone. Its not nerve pain.

I am waiting for neurophysio gait assessment as this has been driving me mad for over a year. All the talk about recovery seems to be that the quicker treatment happens, the more likelyhood the chances of recovery. Well that counts me out then! It's so depressing.

[laylagirl4]

As previously mentioned the hips discomfort started a few days ago. Hurts more when in bed. As for the parenthesis started on and off in 2014. I was being worked up for MS and was told no MS. Went back these year again d/t the increase in symptoms for the last 6 months and last week I told FND. I also developed HTN overnight. Like literally. I have set up messages and chiropractor appointments. Last night was rough for me.

I have yet to see anybody else for this. My PCP is on vacation and am trying to find a provider to help me with this. Not many neuropsych... that actually work with this condition. For me I think it’s stress related though I’ve never had a traumatic event in my life, nor do I have a psych hx. Am in MASSACHUSETTS and am

sad the lack of providers that deal with this. Called Mass General Hosp to try to get into their research clinic for this diagnosis.

[laylagirl4]

HTN “hypertension aka high blood pressure”. Seriously,, my blood pressure was fine on Tuesday and by Friday night I thought I’d go into hypertensive crisis. It’s sad that here in the U.S. there isn’t enough support or medical providers. Everything I’ve read, and all these amazing support groups are in the UK.

I live in one of, if not the best state when it comes to medical treatment/care and could only find a few handful of providers that treat and work with this condition.

[Mic67 in reply to laylagirl4]

I also have just been diagnosed with HTN and am on my second week of medication for it.

Makes you wonder about all these symptoms we share in common doesn't it..there must be so many yet-to-be discovered conditions out there..

[Cindy391]

I was diyin January this year. Again I was told I didn't have MS. I had FND. Google it, it will tell you about 8t