Why...

[Halobean]

My first experience with fnd was in may of 2017. I was driving home from my brother college graduation. I had my 2 year old son in the car. I started to feel off, my face was tingling and feeling numb. I look in the rear view mirror and saw my face drooping. I thought I was having a stroke. Called an ambulance got taken in they the said it was bells palsy. I thought I was fine. Time passed and I thought I was better. Symptoms never went away but I was better. I months later in August we went to a fair outside of our home town. I was fine never felt better. We where heading home. In seconds I lost all motor control. I couldnt talk, couldnt move and could barley breath. My vision was gone. My fiance took my to the closest hospital I was put on stroke alert stayed over night. So many tests were done. Ct scan showed abnormality but the MRI came back normal. It was the first time I head the words functional nerological disorder. It was a blessing and curse at the same time. Now in the present day. I am stuck at home I cant drive. I cant pick up my son. I can't sleep. I cant do the things I love because my hands don't work. The pain is excruciating. My whole left side of my body is lifeless. The doctors have no answers except wanting me to take pills that make me feel sick. I wish there was treatment that works so I could hold and pick up my son...

[Chingona]

That sounds like a scary experience! Have you had a lot of tests done since? Do did they label FND and stop looking for other answers?

[redhead63]

Hi:

If you had an abnormal CT Scan then you should seek another opinion. Your MRI is normal? Get the Report and read it yourself. You might find that MRI isn’t normal, please get another opinion. Sounds like more than FND which I don’t believe in. I was also told that I have FND. I have Sjögrens, a Small and Narrow Basilar Artery in my brain, Autonomic Dysfunction, POTS, Small Vessels Spasms and Celiac Compression Syndrome and the Mayo Clinic couldn’t find these problems, so disappointed with the Mayo Clinic. Keep looking for an answer and don’t give up.

[Kittilyn in reply to redhead63]

Sorry to hear this, sounds very hard. I had very similar symptoms & was also kept in hospital with suspected stroke after a Bell's palsy episode. I was told my mri's & CT's were clear, & that it's FND. But then I got more tests with a private naturopath & am now being treated for Lyme disease & co-infections, & getting better at last! So, there are infections causing my functional symptoms, & they can be treated. Please keep asking questions of your Drs, if you're still unwell. My advice is get more tests done if you can. Good luck. I hope & trust you will be able to pick up your little one again soon x

[Momofson in reply to redhead63]

My son has been diagnosed at Mayo Florida with FDN...I don’t believe it either! He also has a thyroid surgery coming up because he has suspicious tumor on thyroid and many other nodules and goiters. I think his symptoms have something to do with the thyroid...possibly AE or paraneoplastic syndrome. I too am very disappointed in Mayo!

[redhead63 in reply to Momofson]

Hi:

Just make sure that your Surgeon is positive that your son has a tumor. What kind of tumor does he have? Did they check his Calcium and PTH?

[Momofson in reply to redhead63]

My son has had thyroid nodules all over his thyroid since he was 12 years old and is 45 now. They were growing again so he had biopsy. One looks like cancer and many mor are very large. He even has them on the isthmus. It’s time to take out the thyroid. I think it has been the reason for many problems and I think it is the main reason he is having so many issues right now. He possible has paraneoplastic syndrome.

[Momofson]

Has anyone tested you for antibodies? Sounds like you could have Autoimmune Encephalitis. What you describe sounds like it could be that. Your local doctor can send your blood to Mayo to be checked for all the different antibodies that they have discovered. I think other places check for them too.

[DonandLisa]

I am really struggling to except this diagnosis my husbands experience was so terrible as well. Thinking of you

[redhead63 in reply to DonandLisa]

Hi:

Then keep looking for an answer, Doctors are lazy and they don’t care about their patients anymore.

[Momofson in reply to redhead63]

Yes! Keep looking! So much autoimmune out there these days. So many things that they are just finding out about. All the symptoms on here seem to be the same as Autoimmune encephalitis and Neurosarcoidosis. Also Hashimotos

[redhead63]

Hi Halobean:

How are you doing?

[redhead63]

How are you doing? Did you ever get your answer? Did you see a Specialist for Autoimmune problems?