Could it be Chiari? Neuro says no...

[Mastiperous]

For a few years now I have been having problems with dizziness and undescribable changes to my vision and speech.  I also have the feeling that my muscles are weak (but I can still perform activities), tingling in my extremeties, sharp shooting pains in my joints, and fatigue.  After dealing with this for three years I was refered to a neurologists who did a MRI and called a few days later to say I have Chiari, but it wasn't anything to worry about since my symptoms didn't seem to match exactly (mostly the absence of severe headaches, but the back of my neck does ache some and my symptoms seem to come and go every few months).  He thinks I just have anxiety and the Chiari is asymptomatic.  

I tried talking to my general practitioner about this, but he had never heard of the disease and so he couldn't really help.  I guess I am looking for advice from people that have expererienced the illness.  Is my neurologist right and I shouldn't proceed further or has anyone else had similar experiences as me?  I am so tired of seeing doctors and being told it's nothing when I know it's something, but then again I don't want to push for something that's not there.

Appreciate any help!    

  

[*Stormy*]

Hello and Welcome,

Your description is very close to how things started to happen with me. I know what you mean about having a hard time explaining what is going on with your vision and speech, I also had some weird swallowing and spasming in my throat. I know what you mean by having muscle weakness but not actually seeming to lose strength (at least initially anyway). I would tell Dr's that my muscles feel weak but then they would test me and seem to think it was fine. The problem was I could lift a heavy load but if I had to hold my arm repeatedly to brush my teeth, my hair or even drive, it was impossible. All my muscles started to spasm around my neck b/c they were trying to hold my head and arms up. I remember the tingling started first in my feet and it was just this throbbing tingling that I could not ignore. The reason I am telling you this is b/c my symptoms most definitely came and went for a long time but then eventually they stayed for good and that's when the trouble began. I progressed very swiftly at that point and it ended up that I could barely walk.
You are one step ahead of where I was b/c you have a dx to work with. My Chiari was missed by the radiologist and ignored by my NL as incidental. He didn't even have the decency to tell me about it. So I was left for months and months to get worse.
So my advice to you...don't let this go, find a DR who will look into this for you. I highly recommend that you find a NS, NL are not really the right type of specialists for this and most of us have had very little luck in getting them to help us. A knowledgeable NS will know exactly how bad Chiari can affect people and they will take a closer look. Seriously, don't delay, it is the best thing you can do to help yourself. I had the surgery done 8 months ago and I regain about 80% of my leg function back and I am still seeing other improvements, there is still a lot I am dealing with, but SO much better than before.
Good luck...please let us know what happens!
Carolyn

[lu7997]

I am not sure about th MRI. But I would think pending no injuries or other problems 6 months to a year. And as far as referals. Some do some don't. I couldn't get my neurologist to refer me. He felt I was fine an basically making it all up. I called and self reffered. An go in 4 days after my call. (and 2 days were weekend).   I would start making a list. Most speacialist for this are neuro surgeons.  Call around and see.  If u go and don't like him/her. Go to another one. U are intitiled to a second opinion (3 or 4 sometimes ).   Your gp doesn't know mug about this he would gladly give u a referral to any doc u requested (or at least e should).   Good luck and take car of yourself. Take it easy and be careful until u get answers.  And everyone on this forum is so helpful. Don't ever be affraid to ask

[Mastiperous]

Hi to everyone. I appreciate the support and advice.

My last (and first) MRI was in early June, I got the diagnosis in mid June and have since been holding on to the information.  I only recently (perhaps prompted by another dizzy spell) have been thinking about pushing further.  I do have it on a CD and I've also got some blood work ruling out things like lymes, thyroid, etc. etc.

I know the answers to some a lot of my questions really depend, but is it customary for neurologists (especially one specializing in Chiari) to need a referal before they see you.  Also, how long would my current MRI be "up to date" before I would need another?

[selmaS]

HI and welcome to the Chiari forum.

May I ask when was ur last MRI?...do u have copies and the report?...if not, request copies of both and send to a NL(neurologist) for a second opinion.

A chiari NS will want to see these and it  can go a lot faster to get in if u have these in hand....make copies for back ups.

Do u know if ur MRI shows ne changes from the original one where the dx was made?

Symptoms can come and go...and be misdx'd...so that many feel it could not possibly be chiari when in fact it is....keep pushing for answers and a true chiari specialist will be the best option at this point.
Here is a link to our list of drs...u do ned to research the drs, this just gives u a starting place.Please note u may have to travel to get to a dr.

We r happy to have u join our little family, not happy for the reasons u had to seek us out.

"selma"
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

[rod44]

It is best that you find a NS with Chiari experience, any doctor who dismisses CM as anxiety is not worth his salt.
If your GP dose not know CM then you are well within your rights in educating them if they are willing to educate themselves. Learn as much as you can about your illness and pass it on to your GP :)  

Ray

[lu7997]

I have a lot of the same symptoms u said. I do have severe dibilitating eadaches as well. But I have been tol from MANY docs that chiari is asymptomatic and that is not my problem. (stress,migraines,phantom pain, carpel tunnel,neck strain, and my favorite.  I am makin it up).   I finally found a chiari speacialist at Cleveland clinic who confirmed that everything is linked to chiari. And though I am still not better I am at least headin in that direction.  I would search out answers. U don't want to risk doing more harm to yourself because u have the wrong dx.  Also there are many disorders asociated that cause similar problems. And why risk never being able to do wan u want in life just so u can start it NOW.  Good luck. U may be suprised to find out. U can get help and do school.  I know these forums have a list of speacialist.   Look at them an find one reasonable close to u.   Good luck.

[CB1122]

Hey I do not have a dx but my symptoms sound soooo similar to yours! I don't really have headaches either, but I do have neck stiffness/pain and occasionally a headache, but nothing really severe. I have had episodes (similar to how you described) for 10 years... usually its vertigo and speech problems and slow cognition. Sometimes they would last for a few min and sometimes a few days. In the past 3 months I have experienced a new sort of dizziness and this weird sensation on the back of my head. Also I have weakness in my legs - my knees just buckle. Of the past 3 months I have had more bad days than good days... so it seems my symptoms are worsening!!

I have always complained of joint pain and shooting pains in my legs and arms and fatigue, but it was always "growing pains" then when vertigo started I was told I  was stressed (at age 13!)

The ENT I saw recently thinks I have Migraine Associated Vertigo... and I am on Verapamil (not even been a month yet) and so far I still have symptoms. I can't find anyone on any forum that has this dx so I feel sooo alone! I feel like it could be chiari so I am probably going to see a specialist - but its so scary!

I barely can drive anymore and have missed sooo many days of work. I can understand how frustrating it is! I wish you the best in your search!

[Mastiperous]

Is it possible for symptoms to come and go?  I can be perfectly fine for months and then get slammed hard with all of the aforementioned symptoms for three of more months and then suddenly everything is okay again until the next episode.

I live in Virginia.  Of course, the timing of my diagnosis could not have been worse as I am getting ready to start law school.  I am just worried that if I don't take care of this now it will only get worse.  Then again, I am worried about taking time off to figure this out when I have been able to live with it for so many years already.  

[dkdean]

My biggest suggestion is to find a neurosurgeon who specializes in Chiari.  That was the best advice I have ever gotten!!!!!!!  I now travel 2.5 hours one way for appts, but it has made such a difference.  I was told by several drs (and through several dx's) that my 'low-lying cerebellar tonsils' had nothing to do with my symptoms (dizziness, travelling numbness, ringing in right ear, visual disturbances)....now I know better!!!!  Where do you live?  People here will be able to give some leads for someone to see!!!!!  Good luck!!!