New Chiari Diagnosis + Body Wide Fasiculations

[JConger]

Hello All,

Like many, I'm new to this forum, and am quickly gaining such comfort in knowing it's here and available for review and outreach. Thank you all in advance for your time.

I've recently been diagnosed with Chiari - 5.5mm herniation on the right, after a whirlwind of symptoms including the following:

• Weakness in right arm
• Decreased fine motor skills in right hand
• Cramping in calves and feet
• Body wide fasiculations (i.e., twitches, muscle    
  spasms)
• Tingling and faint numbness in feet
• Slight difficulty raising right foot (especially when  
  driving)
• Balance issues
• Trouble swallowing
• Right shoulder pain
• Severe neck pain
• Headaches
• Occular migraine in right eye
• Occasional brain fog

Because these symptoms so closely parallel other neurological disorders, I continue to be riddled with anxiety that there is perhaps another underlying condition, like ALS, though my EMG came back clean, as did several MRI's for MS lesions.

I'm a working professional and run my own company, I'm the wife of an incredible man, and the mother to a beautiful four year old girl who steals my heart with every beat.

I'm trying to stay positive (because isn't life grand!:), however these symptoms are beginning to feel quite overwhelming and are greatly impeding upon my life - despite my many blessings.

Does anyone else experience body wide fasiculations (muscle spasms and twitching)? My neurologist said it may be Benign Fasiculation Syndrome, and has not thus far been the best advocate for me and further Chiari treatment options.

I might add that during my quest for diagnosis, I was told I'm anemic (which was new), B12 deficient and Vitamin D deficient.

Any and all insight is so greatly welcomed and much appreciated.

Well wishes to all!

JConger

[selmaS]

  Hi and welcome to the Chiari forum.

The twitching and other spasms can be Chiari or a related condition or a symptom of low vitamin and mineral levels.Low levels can also be an indication of Ehlers-Danlos Syndrome which can cause mal- absorption of vitamins and minerals from our food or supplements....

I had just about every symptom you listed and had testing for my swallowing issues and none were found...since my surgery my issues are no longer an issue.....

As the above poster mentioned finding the right Dr is key....and educating yourself will only help you know when you have found the right Dr.......

There are many Drs out there that may offer to do surgery to "fix" or cure you...surgery is not a cure or fix....it is only a means to restore CSF flow and slow progression if a syrinx if one is present....

So many run to Drs that tell them these things and end up worse off in the long run....take your time and know what tests you have had and which you still need....

Know you are not alone....

[Elisaandbucky]

Hello chiari sister. Your post makes me want to respond with all the reassurance I can give. We in this community are so glad you are here - welcome to a safe place to find comfort (and some valuable information). There is a member-contribution list of chiari specialists, listed by geographical location for you to begin your search. Which is what brings up the first important point. Do find a specialist. Chiari Malformation is not well studied or understood by the general neurology community. The second thing to think about is something you have already been doing. Keep a detailed list of your symptoms to help you remember to report everything when you are in an appointment with a surgeon. I don't know about you, but whenever I see a doctor, I somehow feel incredibly well that day and struggle to remember the other days. You want to be complete. Also make note of what activities may bring on symptoms.

I truly hope we can help you and that you can find some relief. Rest is a constant and loyal friend. Please keep current so we know where you are.

[Krispt]

Wow you almost mimic exactly what I have!
I've not been diagnosed either way yet but read a lot anout sympotms and nearly all of what you have has been attributed to chiari by many people on here and elsewhere
what tests have you had so far? Also what was your b12 level?