Those in Limbo - Please Read!
 

Since the time I've been dxed, I've learned about many other diseases that mimic MS and there are so many of them I'd never heard of previously! I wanted to post about one of them in particular because I just learned of a second person who was finally diagnosed with this after suspecting MS for a long time. In both cases, the women had been experiencing various neurological problems without any concrete findings and after going from doctor to doctor, were told it had to be in their heads. Yes, it was in their heads alright -- but no one noticed a thing even though their MRIs were NOT normal.

The condition is called Chiari Malformation. The abnormalities in an MRI that can indicate CM are an elongated brainstem and most indicative are low lying cerebellar tonsils. However, most doctors will overlook this in an MRI because they're looking for lesions -- AND if you thought MS was specialized, it doesn't even compare to being able to dx CM! One of these women read up on it and started to compare the MRI of her own brainstem and tonsils to others -- that's how she actually came to ultimately be dxed.

Symptoms can include but not be limited to neck pain, balance problems, muscle weakness, numbness, tingling or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. Hand coordination and fine motor skills may be affected. Symptoms may change for some patients, depending on the buildup of CSF and resulting pressure on the tissues and nerves. Some people are not even symptomatic and come to be dxed accidentally. This seems to be a less common sx but I've also seen 2 people (not these women) say they noticed a change in their voice.

I'm not recommending that all of you get crazy and start comparing your own MRIs to what you see on the internet but if you look up Chiari Malformation and think it might fit, please mention it to your doctor. Here is the link to the a page at the Chiari Institute and there is a lot more information elsewhere:

http://www.chiariinstitute.com/chiari_malformation.html

There is also a Chiari board right here at NT! :) (I wish I could get these women over here but the board I met them on has no way to make personal contact. :() http://neurotalk.psychcentral.com/fo...sprune=-1&f=71

Lastly, some more insight from one of the women who would like to spread the word about CM because it is very under dxed:

- Re: the tonsils, 5mm or more is concidered a "true" Chiari diagnosis but even borderline (under 5mm) can cause someone extreme symptoms.

- Some things can actually trigger the onset of symptoms. Any type of head trauma or something that causes the head to jerk hard can bump and cause the tonsils to descend. Childbirth is another trigger potential trigger -- from pushing OR an epidural. (After this woman had an LP, she went downhill very quickly because of its impact on the fluid pressure.)

Again, I am not posting this to get you all pulling out your MRIs and go crazy trying to compare them to others on the internet. But even if this doesn't pertain to your own situation, please keep it in your mind as something to mention to someone else who's looking for answers. If making people aware of CM helps even one person, it'll be worth it. :)

Hi Bearygood,

My sister was being watched for MS for a several years, and she already had a dx of Chronic Fatigue/Fb. Many of her symptoms matched mine, including numbness, tingling, pain, Trigeminal Neuralgia . . . and since I already had MS, it seemed likely she did too.

Finally they found she had something called Syringomyelia, which is a condition where a cyst forms in the spinal cord. It is quite often dx with Chiari Malformation, but can be a stand alone dx as well. Fortunately she only has only the syrinx.

http://www.syringo.org/

I have a good link to the symptoms of CM, and you are right that it can be overlooked as Fibromyalgia, etc.

http://www.nfra.net/Symchart.htm

CM is still considered very rare, and my doc said he's never even had one patient dx with it, yet he has about 15 MS patients. I have heard of others on the MS forums who were ultimately dx with it though.

Thanks for the info.

Cherie

We have several different autoImmune diseases to choose from in my family....My Doc has stated and my MOTHERS TO....That this is one tough family to Dx properly....And our family history is no help.....

Hey,,,Thanks for that info.....:)

thanks for the info....who knows...I just know something neurologically is wrong with me...even if the neuros dont want to believe it....oh thats right anxiety driven sxs....oh that go away when pregnant as you are happier when preggo....lol...

thanks for the info dear...gonna read a bit, sarah

One of the most educational things for me has been when someone finally gets out of limbo after suspecting MS and it's NOT MS! Since this was not an isolated event in a relatively small community of people, I felt it was worth bringing to people's attention. I'd never saw CM on any of the published lists that have conditions that could be confused with MS and never even heard of it before them -- and they both had so many sx that absolutely could have been mistaken for MS!

I don't know a lot about Syringomyelia but I've often seen it mentioned in conjunction with CM (and you probably know that the board here is combined). Thanks for the links -- I definitely should try to learn about that as well!

Sarah, after I wrote that post I actually thought of you! I have no clue if this is your answer but yes, it's worth reading up on!

Thanks read some....I am thinking not me...as no headaches..not too much neck ache..but some..hmmm

thanks though, it is a great reminder that there are many many neurological diseases out there....eventually one will be me...dont want to have something..but already have something they just dont figure me out..hehe

hugsss all, sarah

Not everyone will have a headache or even all the same sx. Perhaps just look at this as another thing to consider when your doctor next looks at your MRI. You can mention CM and/or ask him if there's anything abnormal about how the tonsils are situated and if your brainstem looks normal. I don't know about other conditions like CM but I wouldn't be surprised if there are other structural things that can cause neurological problems. Maybe just the question will get a doctor thinking! There could be something RIGHT there in an MRI that someone doesn't notice. This was the case for both of these women.

Hello,
It's me, your goofy friend:hug: with a question....when you say, "Tonsils", you don't mean the things in the back of your throat do you? :confused::o


LA

Bearygood, thanks for the information. Actually Chiari malformation was one of the things I remember looking up almost from the beginning of my "weird stuff," because I had so many different strange symptoms, which Chiari can have. (I thought it was always on the MS-differential list, though acknowledged as rare.)

However, I don't have the cardinal symptom of headaches, and my MRI report noted that there was no Chiari malformation (not that I'd ever asked).

I think it was in the news many years ago when it was claimed that CM was actually the underlying cause of fibromyalgia, at least for some people. People were supposedly getting their fibromyalgia cured by having the Chiari decompression operation.

I don't know how that has played out in subsequent years, as I didn't follow the story. It's a pretty serious operation.

I still sometimes wonder whether some structural problem is responsible for at least some of my symptoms, even though no doctor has told me I have any structural abnormality. (A 2006 neck MRI showed bone spurs, but the orthopedist said he did not think that was the cause of my symptoms--but of course, I realized recently, any doctor who does not want you as a return patient--because they can't clearly do anything useful for you or don't want to--is GOING to say that he/she doesn't think that his/her specialty is the cause of your symptoms!)

One reason I wonder is that when I lie down in bed, with bunches of pillows under my neck, I tend to more often get the shocks in my face or other facial symptoms, so I wonder if pressure on the back of my neck causes things to be worse. I also tend to feel more dizzy and nauseated in the mornings, after I've been lying down all night. Of course this is not evidence for anything, but your post reminded me that I still cannot help wondering what is causing my symptoms. Because I have NEVER been given a diagnosis or even a plausible theory for them (most of them).

Thanks for posting this good info!

Nancy T.