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.