newly diagnosed....: My name is Agnes... - Functional Neurol...

Functional Neurological Disorder - FND Hope

5,652 members2,948 posts

newly diagnosed....

Agnes78 profile image
16 Replies

My name is Agnes and i have been diagnosed with fnd 2 days ago...My symptoms started 5 months ago which included severe upper back pain, pins and needles, burning sensation in my arms, limb twitching(mild) and tension feeling around my mouth. I was just wondering has anyone else experienced those kind of symptoms and how do deal with it. I would appreciate if you could share your experience. thank you

Written by
Agnes78 profile image
Agnes78
To view profiles and participate in discussions please or .
16 Replies
FndFiance profile image
FndFiance

My fiance has many symptoms of fnd including tremors, chronic headaches and pain, double vision, heightened sensitivity, nausea, limb weakness, short term memory loss. It's sad because I don't know the best ways to help her except to keep stress away from her and try to keep her mind on positive thoughts. I am sorry for your conditions as well.

Agnes78 profile image
Agnes78 in reply to FndFiance

Thank you for your reply. I am sorry for your fiance, take care

Agnes78 profile image
Agnes78

Thank you for your reply, was very very helpful. So much new for me to take in...

Winnie20 profile image
Winnie20

Hi yes, my most severe problem was my arm unless l held it kept jumping into the air, then things within a few minutes went from bad to worse, l had all the symptoms of a stroke, my face dropped, my speech was slurred and l couldn’t get out of the chair, my bp went through the roof. I was attended by emergency ambulance, after an hour the symptoms started to ease, so l did not need to go to hospital.

laylagirl4 profile image
laylagirl4

I was just diagnosed 5 days ago. I am not sure how to feel about it or how to begin processing this “mysterious” diagnosis. My symptoms are very similar to your except I have low back pain and facial numbness and pain. Increased fatigue and constant headaches are killing me. I have found myself deep breathing and doing meditation which in itself is a learning process. I, like you am trying to figure things out and learn to cope. If you find something that works please share. 🌷💐🌷

Agnes78 profile image
Agnes78 in reply to laylagirl4

It feels good knowing you aren't alone in this... Thank you for your reply. You are right, this is very misterious diagnosis. I don't take any medication at the moment, just vitamins and magnesium. What about the you, are you on medicine?

laylagirl4 profile image
laylagirl4

Yes. I was put on a calcium channel blocker.. because over night I went from having normal blood pressure to elevated blood pressure and headaches. That is as far as I got. I take B12 and a MVI (multivitamin). Nothing else. You?

Agnes78 profile image
Agnes78 in reply to laylagirl4

Just vitamins and magnesium.

laylagirl4 profile image
laylagirl4 in reply to Agnes78

I started to schedule an appointment for message therapy as the muscle tightness and twitching is making me sore as well as chiropractic care. At this point I will try anything. I just don’t want to be become dependent on medications. I have to be honest...finding relief for this burning and pins and needles in my extremities would be heavenly. I have also developed a speech problem especially when I am stressed.

Agnes78 profile image
Agnes78 in reply to laylagirl4

I have tried chiropractor but I was worse after. Hope it works for you.

AjaStar profile image
AjaStar

I have experienced those symptoms and more. In the beginning I would go to the emergency room to see if the doctors can help me but you soon learn they won’t and are unsympathetic. So whenever I feel bad I distract myself by watching movies and videos and being around family. All you can do really is to ride it out and try to be calm and know you can get through it.

Agnes78 profile image
Agnes78 in reply to AjaStar

I know, I went to A&E twice myself and each time were sent back home... Everything came back normal. What I am struggling to understand is this progressive or your symptoms will stay like it is?

AjaStar profile image
AjaStar in reply to Agnes78

I’ve had this for six months. I got stroke like symptoms drooping right face right side weak and numbness tingling blurry vision, but I was able to walk, then the following week my face dropped again and I started slurring my speech was dizzy and could hardly walk..that was for three weeks, then I was able to walk again but was having trouble swallowing tongue and face swelling and that was two months..then all of a sudden got extremely dizzy off balance I was feeling stupid dumb spacing out head slurring constantly had tremendous pressure on top of head and heavy weight over my body and a weakness that feels like a mind power body drain and going pale but mri came back normal again. It’s been 3 months and I can’t walk more than a block but at least my head doesn’t hurt as bad. The severity and symptoms constantly change and I only felt normal maybe three days out of the last six months, im going to physical therapy and my doc prescribe cymbalta but I haven’t tried it because it’s not a cure anyway and I’m scared of the side effects of the drug.

Agnes78 profile image
Agnes78

So sorry to hear about your struggles. If I were you I would probably give cymbalta a go, it won't make it worse. I have heard a good thing about it

Pink_Muse profile image
Pink_Muse

Hi Agnes I to had the diagnoses about 12 months ago after 10 years of another diagnoses of MS I also got the badge of FND to go with it. I just believe it's another excuse for that the doctors don't know what the fuck is wrong with us. I don't think that there is anything different between me before diagnosed with FND or after just that now I'm more determined to get better. I still have MS leisions and ms but I'm also added psykosomatic to my diagnosis 🤯😤

I have chronic lower backpain, chronic migraines, chronic high blood pressure, cognitive problems, anxiety, depression and my vitamin D levels are low if not maintained also I have reynaurds decease. This is topped with the every day stress of life and I also end up with struggle breathing and falling. 🤗😉

Agnes78 profile image
Agnes78

So sorry to hear that, there's a lot on your plate... Are you taking any medication for fnd?

You may also like...

Newly diagnosed need advice

Newly diagnosed

weakness and pins and needles in my right leg and foot, and exhaustion. I read up on FND and sounds...

newly diagnosed

I was diagnosed with FND a month ago. My story is a bit of a tough one. I got tinnitus from covid...

Newly diagnosed

fingers and feet and lots of other symptoms which I won't bore you with since jan. and after a...

Newly Diagnosed

get other symptoms that last a couple of days-2 weeks such as numbness (but still have sensation),...