Poll On Neurological Symptoms

[sue1234]

Since I can't put 64 symptom options on the poll, I am going to break it up by ranges of numbers of symptoms you check off.

http://chiarione.org/symptoms.html

Back in March, before I was making my return trip to the clinic to finish testing and have a neuro consult, I wanted to find a good list of neuro signs/symptoms to go over to let the neuro know what had been going on with me other than being lightheaded when standing. I mistakenly thought a neuro consult at the clinic meant that I'd get a fresh new pair of eyes on the neuro part of my POTS. *roll eyes*. What a waste of time it was. But anyway, I had printed up this list that I found that just happened to be on a Chiari page, that I will link, and checked off what symptoms I had been having. I planned on showing it to the neuro, but she didn't have the time or want to be bothered. I EVEN HAD MY LATEST MRI FILMS OF MY CERVICAL STENOSIS, AND SHE DIDN'T EVEN LOOK AT THEM!!! Anyway, again, on the list I found the really pertinent symptoms and either checked them with two or three check marks. After I did all that, I was thinking WOW, I sure have alot of similarities with Chiari symptoms!

I realize some of the symptoms are so not specific to Chiari, such as insomnia. However, some of them are pretty specific, such as an uneven feeling when walking, sensitivity to noises, touch, light, and full feeling behind eyes and ears. I've acquired alot of the weirder stuff along the way, and alot of it is with me whether sitting or standing. I am just curious if alot of us seem to have ALOT of these neuro symptoms or just some. I was surprised that I had alot of the very specific symptoms!

[Katybug]

Sue,

I had 39 of these symptoms but I don't feel like there are very many symptoms on this list that are specific to chiari. Most of these symptoms overlap for many of the differential dx'es I have looked into for myself.

Katie

[CharmedLinz]

I agree with Katie a lot over lap.

That being said I DO have a borderline Chiari Malformation.

I'm the one that just voted..... over 60 of the symptoms.

Here is a link to a questionaire I filled out last year for my PCP when he wanted to send me to a Chiari clinic.

It's more for interest than anything else.

I don't think all my symptoms are caused by my Chiari.

I now think maybe CCSVI since it's been mentioned here, but my PCP has long thought I had benign pressure Hydrocephalus.....pretty much seems the same.

My Cardio has long thought I have Concussion Syndrome..........same symptoms.

UGH UGH UGH

Go to this link and click on the 2nd form for the "Questionaire"

http://chiaricare.com/Consultation/Patient-Forms.aspx

[issie]

Whoa........48. Unreal!!! And yeah, sort of thinking some of them are related to other issues - like EDS for example.

Issie

[issie]

So what did they do for you at the Chairi center in Denver? Thanks, for the link by the way, helps to know more of the symptoms.

Issie

[GypsySoulNicole]

Wow...only 4 I didn't have. I had my MRI with and without contrast today, as ordered from the opthamologist. I hope they can find something out!

[CharmedLinz]

Sorry Issie, should have been more specific.

I haven't been to that clinic yet. We got a little side-tracked by more pressing things last year when I filled that out.

My PCP spoke with the Doc there who said he would look at my case which is why I filled it out, but right now it's the least of my worries. My Chiari is very borderline, at least laying down on MRI it is.

[sue1234]

I know these symptoms are not all specific to Chiari, and I think I mentioned that. I listed this list so that people could have a good idea what structural neurological issues, such as Chiari, cervical stenosis, syrinxes, and I'm sure just about anything that obstructs the flow of CSF and maybe blood flow could experience.

The way I see all of my symptoms is, POTS doesn't cause all of my neuro symptoms. POTS, afterall, is just a "symptom" itself. And, something caused my POTS to hit in my 40s. So, since doctors aren't doing a great job at treating my symptoms, much less trying to figure out why the POTS came about, I am having to look at my cluster of symptoms and look at the possible causes. If I find I have another diagnosis that contributes to me having POTS, then I won't have spent years accepting that I just have to live with POTS.

Of course, besides the possible structural issues, I still am interested in the autoantibody theory. But, no one to test me for that.

I watched a webinar on Chiari this past weekend. It is a doctor from a neuro institute in Houston talking about symptoms and diagrams/MRIs of the issues. He speaks a little slow and it drove me crazy, but even though it says it is an hour, it really ended around the 30-minute mark. Anyway, in it he said that sometimes it is not so much the issue of cerebellar tonsil dropping, but the crowding of the cerebellum. That doesn't allow good CSF flow around the area, and that can contribute to symptoms. Kind of like having a small posterior fossa that crowds the brain in the back.

So, with my severe neck popping sometime around the time that POTS hit, I think I'll have this all addressed by a specialist to rule in/rule out if this actually is an issue. Here's the link to the webinar:

https://memorialhermann.adobeconnect.com/_a976765836/p98w2t7l8ho/?launcher=false&fcsContent=true&pbMode=normal

[lgtaylor100]

I have most of the symtoms and also have cervical stenosis. I have been to several neurologists and not one of them have mentioned this. Any suggestions for how to proceed with investigating this. I have had MRIs, MRAs and MRVs but nothing has shown up.

Lynne

[sue1234]

Here's an interesting excerpt I found talking about Chiari and EDS: (don't have the original source, but probably not too hard to find)

I am interested in mechanical reasons as a cause for POTS because it seems that alot of us share connective tissue disorders. Just as some people are seeking out a MCAS diagnosis and others here are helping them with presenting symptoms and the best doctors, the mechanical issues of neurological symptoms might explain symptoms in other people. I hope for people who have never thought of it before to see if they see some of the similarities in their own history and make a judgment call from there on whether they should have this checked out. This is a path that I am going to have checked out. I have been going over the various POTS causes and have been slowly through the years having them addressed. My last two causes are this and autoantibodies.

Chiari with EDS as shared from Dr. Clair Francomano at Harvey Institute of

Genetics.

"The term "Chiari Malformation" is used to describe the situation where the

cerebellum, a structure at the base of the brain, is extending through the

opening at the base of the skull, which is called the foramen magnum, The

extension through the foramen magnum is called "hernation". This can result

from cranial settling, which "pushes" the cerebellum through the opening, or

tethered cord, which pulls the cerebellum from below. The conventional

definition of a Chiari Malformation states the cerebellum tonsils must protrude

at least 5mm below the foramen magnum. However, patients with less extreme

herniations can also experience signficant neurological symptoms involving the

brain stem and cerebellar functions. A wide variety of neurologic symptoms,

include headaches, neck pain, tinnitus, swallowing difficulties, visual

dusturbances, a sensation of pressure behind the eyes, autonomic nervous system

dysfunction (POTS, neurally mediated hypotension), sleep disturbances, brain fog

and memory issues may result from Chiari Malformations.....Another complication

of hereditary connective tissue disorders is called occult tethered cord. In

this condition, a band of connective tissue called the filum is wrapped around

the base of the spinal cord and exerting pressure on the nerves that go to the

legs, pelvis, bladder and bowel. This condition may cause numbness in the legs

and pelvis area as well as severe incontinence as well. Because of the

hyperextensibility of the connective tissue in patients with this disorder, the

filum may become stetched out over the years and is not visible on an MRI. This

is why it is called "occult", it cannot be seen using current imaging

techniques. Diagnosis is usually made based on clinical findings and also the

consequences of tethering which may be seen on a cervical and brain MRI,

effecting the angles between specific landmarks in the spine and skull (Milhorat

TM et al. Association of Chiari Malformation type 1 and tethered cord syndrome:

preliminary results of sectioning filum terminale. Surgical Neurology 72:

20-25, 2009). At this time, it is not known why this condition occurs more

frequently in patients witih hereditary disorders of connective tissue."

[lgtaylor100]

I forgot to ask if this is something you are born with or if this can occur later in life?

[sue1234]

Igail, I'm not sure myself. I read around on all this over the last year, but I'm not sure on all the specifics. From what I understand, one can have this as a child, so assuming someone can be born with it. It can present later in life related to idiopathic scoliosis. I developed scoliosis as a teen, which never limited me, but in my 40s I began to "feel" that I was getting more spinal curves in various directions. I developed POTS around then, so I have never had the scoliosis really addressed. But, I think it is time to go down that road.

As far as specialists to go over MRIs and history, I think there are 3 top places, of course which are not convenient for me at all! One is in Wisconsi, one in New York and the other in Colorado. I think I will see the "best" that I have in my area and go from there.

[bellgirl]

I guess this is why I have a neurologist, but I still have normal MRI's. To me alot of these symptoms are dysautonomia whether you have chiari or not. I have kyphosis, too, btw!