Just Diagnosed with FND

[Collie44]

Confused. Trying to work it all out. Just diagnosed

[Hidden]

What are your symptoms?

[Collie44]

Jerking shaking tremorimh, just walked on my own today for first time in nearly 3 weeks, Migraines, vertigo 24/7 .... And it goes on. I also have CRPS. My eyes getting stuck shut again really frightens me. And not being able to walk again. Had to stop drivinbm. My ability to write has finished severely and I find it extremely difficult to type properly. Trying to process and comoled regional pain syndrome. Trying to wrap my head around it all. Just got out 0f Nuero after a rather lengthy stay ... Again ... At least this time they diagnosed me I guess . It's just alot to take in and I can't think. Soooooo slow in my brain functioning. My pain levels went off the Richter scale 10+. Thankyou for replying

[Hidden in reply to Collie44]

Alright I understand. I know it seems impossible right now but if you remain hopeful things WILL get better with TIME and REST. It's not impossible, I promise just take baby steps. Can I ask what tests did you have done for them to reach this diagnosis?

[Collie44 in reply to Hidden]

I know they did the Hoover test. Also MRIs and Cat Scans. I was initially treated as a stroke patient but all brain scans clear. Been in and out of hospital ED for years and previous stay in Nuero. So it's taken a long time to find out whats wrong with me. How long have you been diagnosed.

[LouBL0u in reply to Collie44]

Hi

Sorry to hear you are having such a difficult time at the moment. All I can say has been said, you will make it- honest!

When i first fell and lost the use of my legs and arms it was really scary but I worked on small goals every day... i was fortunate that those functions returned quickly.

The processing and speech are on-going - I had to talk myself through each step in making a cup of tea at first but can now make great coffee too

If you can access specialist rehabilitation it can really help.

Take care x

[Collie44 in reply to LouBL0u]

Thankyou for your kind words. Each day is a new discovery.

[JustDomUK]

Worry was the biggest thing that affected me. I worried whilst I wasn’t diagnosed. I thought “is it going to kill me?” No one would tell me. They just kept saying that I needed more tests. Once diagnosed I felt a great weight lift off of me. Once I’d accepted it of course. I didn’t at first. The scary stuff that I had (I can’t walk and my foot is pointing to the left and spasms day or night) was the loss of balance. I lost it and would swing and lurch all over the place. This eased and only reappears now and again. Not often. There are some symptoms that are stubborn (my foot for example) but you will find strategies for coping. Can’t stress enough about vitamin checks. Check for D and B12 deficiency. Once you feel better then it becomes better. Less scary. Key thing is not to focus on your symptom. My pain eased slightly when I was found to be deficient in vitamin D and treated. Keep calm, to quote the bible, you can’t add a cubit (18 inches) to your stature by being anxious. I wish you well.

[Collie44]

Thankyou for sharing. Your story sounds familiar. You are right. Me being anxious will help nothing. It such a massive life change. I'm in shock still. It really hadn't all sunk in. Like you tho, I am really grateful the doctor's finally found out was wrong with me, because like you I thought it would kill me. And I I had started telling the doctor's that. Getting hypoglycaemia, falling all the time, loss of balance, vertigo, nausea, vomiting, and eventual paralysis where I couldn't walk at all is no walk in the park. So many things were happening so fast. I was petrified thinking of had developed Parkinson's. FND is a confusing disorder. Hard to keep up with what will come next. The seizures are truly awful.