Anyone with similar symptoms?

[DragonNC]

Hi everyone, I was diagnosed with FND in August 2023 after almost 2 years of seeing many doctors, specialists, etc. In early 2022, I started having unexplained leg weakness in both legs several months after minor knee surgery. It has slowly progressed and while I am able to walk, ride bike, some golf, etc I am not able to run due to the weakness/pain. I currently suffer from 3 main symptoms which are weakness in both legs, a feeling like there's a "short circuit" that makes me feel like I am going to collapse often when I am walking, and a constant electric/buzzing feeling in my head/face/neck. Started CBT in September of 2023 so I am hopeful that can help. Has anyone experienced similar symptoms? Especially the electric/buzzing feeling in head/face/neck?

[angel-7]

The main symptom I experience through all of this is electricity buzzing, currently in the right side of my head, neck and shoulder girdle. It is very difficult for me to deal with.I wish you the very best 🙏🏼

[DragonNC in reply to angel-7]

Thank you. Sorry to hear you have similar symptoms with the electric buzzing. The only thing I can do to make mine better is lay down/sleep. If I am up sitting or walking its almost constant. If I find anything to help it I will let you know. All the best to you.

[Ralphierover2727]

Hi there! I have similiar symptoms. Have you looked into energy healing? The buzzing you could be feeling could be stagnant energy. CBT therapy can help also with chakra cleansing and chiropractic care. I know it sounds woo woo but it is completely life-changing and helps with my symptoms. Good luck! I know how much this sucks! Sending you love!🥰

[DragonNC in reply to Ralphierover2727]

Hey, thanks for the information. I have not heard of energy healing or chakra cleansing but I will certainly look into it. Glad to you it has helped you with you symptoms. Good luck to you and love back to you🥰

[TheFourAgreements in reply to Ralphierover2727]

Ralphiere, do you have an energy worker you have worked with & recommend?

[Ralphierover2727 in reply to TheFourAgreements]

Hi! I would highly recommend Cathy at Souly Holistic in Raleigh. She is a Reiki Master and is seriously a miracle worker. Her virtual appointments are just as good as in-person. She was my master teacher as well. 🥰

[Corgi_Gal]

Curious if you had testing to look for genetic neurological disorders like Charcot-Marie-Tooth? It's as common as MS but doctors rarely look for it and it takes an average of 7 years to get a correct diagnosis.

Your leg symptoms sound an awful lot like CMT.

It's usually inherited but the mutations can also occur spontaneously.

There's a great company called Invitae that does genetic testing. You don't need a doctor referral. You do a virtual appointment with a genetics counselor and then they mail you the saliva collection kit. Results come back in a few weeks. They can work with your insurance if you have it or you can just pay $300 out of pocket.

I highly recommend getting DNA testing if you haven't already. There are thousands of mutations that cause neurologic symptoms. I would get tested before accepting a FND diagnosis.

[DragonNC in reply to Corgi_Gal]

Hi, thanks for your comments. Yes I have had lots of testing. EMG, NCS, labs, scans, etc. I will look into the DNA testing. Thank you so much for the information.

[angel-7]

I have an appointment this week with Orion Mott. See orionmott.com. I sense my issues began from concussions, he has much experience there as well as other forms of energy healing. He is also a Reiki Master, a medical intuitive and more. There are testimonials. In Toronto, Canada, and provides online sessions. There are videos on YouTube. 🙏🏼🙏🏼🙏🏼

[Brokendeer]

Hi several possibilities:

If you had an epidural for the Knee Operation it may have disrupted the Spinal Fluid flow and that would account for the weakness in the legs and to some extent the lack of pressure you maybe experiencing in your head (as Spinal fluid supplies both areas)

If you had a General Anaesthetic they would have extended your neck to intubate you to provide the surgical anaesthetic gases - this hyperextension of the neck may have pinched a nerve and caused the tingling, buzzing sensation in the face etc.

Having any lower limb surgery means crutches and this posture change, albeit temporary will affect the Spine in general and walking afterwards may not be as natural posture as before -stressing the whole body.

So in essence: Posture would be good to focus on for awhile with a Neuro-Physiotherapist or Muscular-Skeletal Therapist to see if that helps things?

Good luck

Look for the calm in the Storm!

[DragonNC in reply to Brokendeer]

Thank you for the information. I will certainly look into those. I am doing PT for my neck due to ongoing neck soreness I had for years prior but never really all that severe. It's still not bad at all just a little stiff sometimes but thought it couldn't hurt to do some PT to see if that helps.