Hi Everyone . I'm Ce. I'm sorry my heading sounds so negative. But this new dignoses I got last week from a neurologist makes 13 physical health and 1 emotional health condition I have now and with not knowing enough about this condition and more symptoms have decided to come out to play I'm just really confused an upset.
I posted a question here this morning hoping someone might have an answer to but no one has come forward yet.
I'm just totally at a loss and this is something I never am because I have run a supportive health and information support comforting group in Facebook for a very long time so no one would feel this way an yet here I am myself asking for help.
So if you please can shed any advise or light to be even via message or to the question I put up this morning I be so thankful. Happy Easter to those like my family and I celabrating Easter weekend. Sending Hugs comfort and light. Keep strong 🤗.Ce
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So sorry to hear of the symptoms you've been going through, and it must be so challenging for you.
My wife has FND, and like you, she gets stabbing pains that can feel like electric shocks in the body and also tremors that affect her body, and also her eyelids can tremor, which means she has to close her eyes momentarily, until the tremors have stopped.
Did your Neurologist offer any kind of direction to pursue, or offer any information on FND?
Has he or she prescribed any medication to you?
You will get more replies in time on here, and everyone is most helpful.
FND varies from individual to individual, but most commonly the symptoms include tremors, involuntary spasm, leg weakness and other symptoms.
I'm assuming you have had all the necessary tests such as brain scan etc, in order for you to be told it's FND.
The brain is ok with FND, but the wiring isn't functioning correctly and is 'misfiring', for want of a better word.
If you require any info, then please don't hesitate to reply.
Hi Tony and Kim. Thanks so much for taking the time to chat with your valuable information.
Yes I had MRI, cat scan, vascular scan. Co ordination an hoovers , balance and limb strength exam Tests. The results all came back with FND causing a flair up of my myalgic encephalomyelitis... M.E and my fibromyalgia...FMS as well as the nerve trapping in cirvical and lumber spine osteoarthritis . I'm really battling the last 3 years to avoid being in a wheelchair even though it's 18 an 20 year's I got the FM's and M.E . I'm determined to still keep up the battle even though the neurologist has booked the occupational therapist to call to me Tuesday with one and a Occupational therapy plan. I wasn't started on a treatment if plan. I'm to go back end if may with a diary to see my neurologist and she then will make a plan but I'm on lustral a low dose of 50mg for my CPTSD and the FMS & M.E . IM Just so frustrated with this new condition , I'm so glad that closing your eyes till the tremor passes I so wish that would work for me but sadly they only jump like a stuck I'll old movies rail halfway up and down. The twitching an locking in my right eye just won't stop. So any advise be so welcome 🤗 I wish you both a happy and prosperous new week and a pain free one. Thanks again 🤗🤗👍🙏
Hi Mic. Sadly If I log onto Facebook I would have to be there for hours because I can't go on and not go to my physical health support group I run and I have almost 900 member's still left who have not left my group yet outbid the 1,200 members I did have before I became to unwell to be available and have a dear friend running it for me. I will though log on to them links you sent me that I'm so very greatful for when I am able to go to my Face book. Thanks so much for your time and support Mic I'm really grateful an wish you a wonderful new week ahead. Best wishes Ce. Keep strong 🤗
You’re not alone in having been through many diagnostic hoops.
I just keep my gaze on things through the fndhope and neurosymptoms website to get info from similar space, or else, as you’ll find, there are many different schools of thoughts around the diagnoses, some helpful and done not.
Don’t except a FND diagnosis until your doctors checked absolutely everything else. It seems to be the newest thing they’re diagnosing now when they can’t figure out what your real problems are.
Make sure that you have had the antibody testing for autoimmune encephalitis and check the thyroid antibodies against your thyroid, which are TG and TPO. The autoimmune encephalitis antibodies test can be drawn at most labs, then sent to Mayo, Rochester to be analyzed. That’s a very important tests when you have your symptoms, and it is hardly ever done! The thyroid also controls so many body functions and should be checked completely.
Hi thank you for your message and advice.vtes I have had so many blood's done , scans, MRI exrays different consultants Doing kits of examination while I was an in patient for almost a week and this is where they came up with the dignoses that the FMS and The M.E that o have the last 20 an 18 years and the spinal an knees osteoarthritis flair up is because of several symptoms of NFD . The other conditions I'm to over educated on but this new one has me at a los 😥
The FND has a lot of people at a loss! No matter how many tests you’ve had done, I bet you have not had the Mayo autoimmune test done. Also, probably haven’t had the TPO and TG done on thyroid. Check to see if you even got the thyroid panel done.
I also have to see a immunology specialist every few months as I have auto immune deficiency for years and my IGM is now totally absent it's no longer exists.
Thanks a million. I will do tomorrow night. My daughter has had to be readmitted into Hospital. She's only home 3 weeks after being in 3 month's. She was in life support and induced coma for 3 weeks new year's week. She was so very sick we lost her an got her back thank God but now she's had a little set back and also has been dignosed too with fibromyalgia. So that is me with it 20 year's my husband 5 yes an youngest son since Last year and now our daughter second youngest. I'll be back tomorrow night after I get home from visiting my daughter. Thanks so much for your support time and chats . Talk tomorrow. Night and God bless
My daughter hopefully be home in a day or two in prevention migraine and pain relief medication please God.
So hopefully she will be stored soon , she no Pain threshold so it's hard to treat her.
How are you today how are you feeling?. My OT that was to call this morning rang quite unwell so she's reschedule till Friday afternoon after my Dental Hospital appointment. Today was a orchward one. I almost fell twice when walking. My two legs feal like there is cavity blocks hanging out them when trying to walk and my eye lid is back in tremor twitching again and my eye itself is the size of a pea. But sure I'm alive that's one good positive thing . How's today been for you?🤗🤗🤗😃
😥 sorry your son is not feeling well. I'll keep him in my prayers and I'm going to do as much research as I can and I will be helping both of you as much as I can when I do get results from research. I promise.
Please let me know how your son is doing and if you like you can tell me what's gone on for him at the moment and I'll see what I can come up with that just might be of help to both you and he.
Thinking of you both and keeping yous in my prayers. Hugs Ce.
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