New Here and a Question

Hi All - I am new here and wanted to see if I may be in the right place.

I have been having issues for about 18 years now. It all started when I was about 30, I think. Beginning with pain that started in my legs and now is body wide, I continued to experience bouts of extreme fatigue, confusion, and limping that lasted 2 days to 2 weeks or so. In 2000, I had a very weird loss of vision in one eye that doctors could not diagnose. I was also found to have memory loss and language difficulties - I cannot process language in my left ear. I've also been left with a small spot in my vision since. The pain, fatigue, confusion and limping continued until my Dr diagnosed me with Fibromyalgia in 2008 - I also developed a very weird, gasping breathing pattern during this time.

Long story short - in April of 2012, I had a complete shutdown - mental function practically absent, only able to speak in short bursts of subject words, incredible pain, bad limp in right leg, weakness, dizziness - my Dr sent me to the ER. Within two weeks, I was diagnosed with MS. The only problem with this is that I have NEVER had a lesion in my brain or spine - how can this be MS? I've asked 5 Neurologists how this can be MS - they all insisted it was, until my last appt. Finally, it's not MS - so what is it? Conversion Disorder - seriously? I've lost my job, my drivers license, income, car, friends, body, independence - and suffered untold pain and mobility difficulty - and I've made it all up in my head?

The day before this 'attack' - I knew account credentials for over 30 accounts at work, procedures and algorithms for account information for over 5,000 employees at our institution, as well as network access for them all and security protocols. In addition, knowledge of hundreds of herbs, their properties and medicinal uses, learned throughout my life, recipes for my own products, running an herb business and consulting with Drs. I also made money on the side crocheting items. The day of the attack, I lost all of that, along with ability to count correctly, or calculate or relay numbers. A large volume of information is missing - no longer available to me. My family doctor sees this profound change - my husband says my entire personality changed.

Symptoms: Pain - numbness, tingles, stings, aches, sharp, buzzing, deep/cold - all in different areas, all over my body. Headaches - weird knife like on either side at the top of my head, usually one side at a time. Pain in neck and across shoulders. Ringing and noise in ears. Strange panting breathing pattern. Difficulty swallowing, especially liquids. Urinary hesitance and incontinence. Memory problems. Calculation problems. Balance problems/falling. Weakness in legs - started in right leg, then left, now left arm. Gait issue - wide based,slow, unsteady need cane/walker/wheelchair. Muscle spasms, clonus. Trouble speaking - cannot speak when very tired - just strings of non words. Fatigue - extreme.

I had a lumbar puncture in 2012 - O-bands and high IgG. Every MRI since the first in 2000, the Radiologist notes Chiari Malformation I - but no Dr has every told me I have this.

Could this be what is really going on? My current Neuro is considering another lumbar puncture.

Thank you Nykki - I actually do have disability from the gov and the company I had worked for - nothing anywhere near what my pay was, but at least we can keep our house. I was extremely surprised and grateful that my SS application was accepted and approved in less than six weeks.

I have wondered about dysautonomia as well - I have arrhythmia, very high (272/124) and very low (104/58) blood pressures. I am wondering about mast cell activation syndrome also - over the last year, I have had anaphylaxis to every med they have tried for pain - elavil, gabapentin, cymbalta, baclofen. The Pain med Dr said I am out of options - allergic to every class. In addition have had anaphylaxis from herbs I use medicinally and some foods. This month I have had two instances of my lip swelling, then an eye and we have no idea from what?

Oh - also, yes - I need to find a Dr. Is surgery always the right answer when you get to this point? My husband has scleroderma and needs me. It worries me to have brain surgery, even though I am really intrigued that reduction or elimination of these symptoms is possible :)

Have you looked up cerebellar ataxia syndrome??

I found two Drs at Penn State Hershey - that is where my insurance is. Is this Dr Carl B Heilman? I find him in Boston, MA

Thank you

I don't see that the LP results corroborate cerebellar ataxia? Also, I am Romberg positive - indicating sensory ataxia.

Confused, yes, in a word. chiari could very well be what is going on. Your symptom list fits. The breathing trouble worries me...have you had a sleep study? If not you one asap. Apnea is common with chiari, but breathing trouble during waking hours is extra concerning and makes me wonder if you could have cranio cervical instability. There are many different types and almost never called out by a radiologist, not to mention NLs. Types of cranial cervical instability are:

Retroflexed odontoid
**Basilar invagination
Abnormal amount of up to down movement at CC joint
Abnormal front to back movement of CC joint
Sharp clivo axial angle

About 20% of Chiarians have some type of cranio cervical instability - the problem with CCI is that it always involves the stretching of the spinal cord and or the medulla. When this happens we get severe symptoms, including pain, breathing trouble and heart problems (autonomic nervous system is damaged)

Not trying to worry you with this but hopefully help you to rule these things out or get the help you need. A challenge with the CCI issues is that many NSs don't know about it. It's hard to get a good chiari NS and even harder to get one who understands CCI too. The NSs who I am aware of who understand CCI are

Henderson, MD
Sandhu, MD
Rosner, NC
Patel, SC
Frim, IL
Trumble, FL


I can see your life has been turned upside down with this, and I'm so sorry. The docs who dismissed your chiari diagnosis were wrong to do that. Hopefully now you can begin to research and find the right NS to help you. Many chiarians have been diagnosed, either incorrectly incompletely, with fibromyalgia- you may have that but you also have chiari.

So glad you found us, Jenn

I don't remember seeing any of this on my MRI reports, but I will investigate - Thank you. The breathing changes are very weird and usually affect me for a few days at a time, but not all the time.

I thought of something else regarding the bel breathing issue…many of us also have Dysautonomia (POTS is a popular type with us although we have all kinds). Dinet.org is a good resource to looking into it.

Thank you jcdemar - I will investigate

Okay all - I found one of the original MRIs - this one dated 2001. It indicates Chiari I Malformation, approx 3-4 mm, more pronounced in right tonsil.

I know I need to see a Dr - I don't trust anyone in the hospital where I have been a patient for all the years this has been ignored. I have trouble traveling as I cannot drive and my husband has scleroderma and has trouble driving/traveling. I will keep going through the list and searching for the right doctor - but, there is where I am at a loss.

I don't think I want surgery after reading everyone's ordeals here :( Am I going to get worse if I know what this is now and how to take care of myself? The thought of getting better with a surgery is a really tempting and exciting thought - but, realistically, how much better will I be? Maybe I'll be able to walk again :) and drive :) but will I be able to remember all I've lost and talk normal again? Is the damage already done to brain tissue permanent? Will I have more issues or different issues?

I know - you all deal with this. I want to give you all a BIG HUG. Is there anyone who opted to not do surgery - or is it a definite only option? I am assuming I will lose my disability if I choose to not do surgery, even though there is a good chance I will still be unemployable in a job like I had even with surgery :(

It really would help if a doctor had ever explained this to me :(

Dr. Sekula is at upmc and has an incredible reputation. He knows chiari and his surgeries are minimally invasive with short hospital stay and good outcomes. I live in St. Louis and am considering traveling to upmc if I need surgery.