Vision? Autoimmune? What else?

[christiemon]

I began having constant double vision a little over a year ago which lead to my Chiari diagnosis on an MRI.  I had a 20mm herniation and blistered tonsils so I was pretty compressed.  I did see a specialist (one of the best) that did my decompression surgery in October.  Since then my vision got better while I was resting from surgery, and than was even worse after I returned to work.   I also have difficulty breathing due to diaphragm weakness, a new weakness in my left leg, facial and tongue weakness, extreme fatigue and difficulty thinking, memory is shot.
In January I was diagnosed with Myasthenia Gravis, an autoimmune disorder and began treatment, however I do not respond much to the treatment and show nothing on the blood tests, so my doc's question the diagnosis. One thing I did do well with was IVIG treatment, however since I had an allergic reaction to it, I can't continue it.

I had eye muscle surgery last month, it straightened my eye's back but I still have trouble maintaining a gaze.

I went to see a new neuro who believes it's all caused by the Chiari, even though my flow looks good and new symptoms began as far out as six months after surgery.  Personally I don't think that fits.

Does anyone have any suggestions or similar symptoms?  I don't understand.  

[Trixie2000]

My son (teen) has chiari and was decompressed 2.5 years ago. He went downhill afterward and developed POTS - then multiple infections. We now know he has Babesia and Bartonella along with autoimmune encephalitis (aka PANS). He was bit by a tick a year before the chiari diagnosis. He also has severe eye issues, floaters and blurry vision. Caused by Lyme. Total nightmare.

[selmaS]

  I know many of us have Hashimoto's thyroiditis....RA-.....

Dr Oro's site has a list of related conditions...here is a link-

http://chiaricare.com/Related-Disorders/Other-Related-Conditions.aspx

I know getting a Dr that knows and treats many of the related conditions can be as daunting as finding a true Chiari specialist....

[christiemon]

Hi Selma.  I have asked about POTS as I have several of the symptoms, and one of my neurologists is supposed to send me for testing but I haven't heard back as of yet.   I did go to a rheumatoid Dr as I am hypermobile and have many other connective tissue symptoms and she basically asked me why was I there and if I was to find out about Ehlers Danlos I was to go to Boston and see a specialist there.  Ouch.  I feel I have some sort of auto immune condition, however I'm having a hard time getting the care to sort out what's going on, even though I've been seeing some pretty high regarded doctors.  What types of auto immune conditions can be related to Chiari?

Thank you for your help. = )

[selmaS]

  It is possible that u have developed a post op condition or issue...it is not uncommon for some to develop ICP, POTS or to not be aware they have ehlers-danlos.

Do try a rheumatoid Dr. to rule out ne possible connective tissue disorders and or auto immune conditions that may be related to Chiari ,

[christiemon]

Thank you so much Lisa!  Do you have a good local neurologist you see?  I see several but some haven't offered much information.  I will message you. = )  Thank you so much!

[desertstorm2009]

Although I can't solve or speculate as to the correctness of your diagnosis.... I see you are in Az and I can offer you my support. I do have information which may help. You can send a private message if you like. You're not alone although you may feel like it :-) Lisa