update with neurologist

[Jennifwe223]

I went to the neurologist on Tuesday because my symptoms began to worsen.I thought I was going to see one who specializes in Chiari Malformation because that is what I was told, however he did not seem to know much about it. He saw my episode firsthand and told me that most of my symptoms are not related to Chiari. He was clueless to what I have because he has never seen anyone like me before. He does not know what could be the cause of me having these symptoms or had any idea of what it possibly could be. He sent me for blood work and I have to return for an MRI to check on the Chiari. He did say that it could be a psychiatric problem. However, when I did see a few psychiatrists they were not able to help me either and sent me back to the neurologist. He did say it could possibly be an underlying cause that no one yet knows about because he did not even know who to refer me to or where to send me since he has no clue what it could be. I guess I am a mystery just waiting to be solved. Now I am just waiting to get results to see if anything comes back positive. He said it could possibly be a nerve situation but he is not sure. Every time he tested my reflex in my one leg or both my ankles, it did lead me to have an episode for a few minutes because I would be able to feel all of the nerves in that part individually and shoot up to my head and feel those nerves individually and move fast. My example of how it feels is if someone ever ate pop rock candy that is what happens through my legs and head. He did seem interested and curious about what was happening and why though and does want to see me get better! If anyone has any ideas of what I could possibly have or advice about what to do next if everything comes back normal, that would be great! Thanks in advance. I think I might have to be my own doctor if everything remains to be normal!

[selmaS]

A neurologist should  be able to set up this testing for you....and or a Chiari specialist.....

  Deff  something to have checked and ruled out.....

[Jennifwe223]

Do you know anyone who has gotten this done...or where to go for this? i did look up the tests doesnt seem so bad.Also, I looked at people who put videos of themselves having an episode and those are the same symptoms and what I go through when experiencing an episode. I think I am going to do some research and find a place to get tested just to know for certain whether I have this or not.

[selmaS]

  The  do  a   tilt  table  test....also look  at  BP....etc....but  the  tilt table  is  a main one....along  with  looking  at symptoms....

[Jennifwe223]

How do you test for POTS..what kinds of testing is done to rule that out

[selmaS]

  I had that....too....but I was  not DX'd with POTS....but had it ruled out......

  Temp regulation issues is deff  a Chiari thing....but to be sure it is  not  POTS or something  else ....have some more  testing....

[Jennifwe223]

Thank you for all your help and support...I greatly appreciate it :) To answer your question.. yes at the time of my symptoms changed..i do experience the temp really hot I do burn up my body gets extremely hot its crazy how fast the temp. changes. However, sometimes the temp will be very hot and then I will be freezing and extremely cold. Cold temps are only temporary where as the heat occurs every single time when the symptoms increased

[selmaS]

  Forgot to  ask....did  the  temps  get  really warm/hot  around  the time  symptoms  changed?

  If yes, checking  for POTS is something  to rule out  as  heat can  trigger and make  existing symptoms  worse.

[selmaS]

With an  EDS  DX I would look into going to  Baltimore,MD to see Dr Francomano....she is an EDS specialist  and  top choice  for those of  us on  the  East  Coast.....

  EDS can  cause all  sorts of issues that could  cause the symptoms you mentioned....make sure it is not from  that...and if not let the Drs at TCI know  your symptoms have changed.,....

  With Change  in symptoms that can also indicate a change to the condition....ie- Chiari....??

[Jennifwe223]

The symptoms began to changed and increased in June 2014 this summer. No he did not refer me to anyone because he did not know what I could be going through. I got the MRI because I was experiencing headaches constantly, dizziness, and weakness and missed two weeks of school. Keep asking questions if we can get to the bottom of this possibly that would be awesome. Right now I think I am going to see what the blood test results are and how my new MRI comes out and go from there! These are all good helpful suggestions that I can use if everything comes back normal

[selmaS]

  May I ask  when these symptoms changed,increased....??

  The  symptoms you  have may  be from  the  EDS and not Chiari...did you  get  a referral to Dr Francomano?

If you did not have  many  symptoms,what lead  you  to  get  the MRI  that DX'd you?

Sorry  for all  the questions....but may help make sense of  this for you.

[Jennifwe223]

Yes, I have been to the TCI and that is when I got a chiari DX. They told me that I was not a surgerical candidate because mine is only 4mm. However, this was when I was first DX where I did not have many symptoms. They DX me with Ehlers Danos Syndrome don't know if I spelled that correct. Now, I am presently experiencing many more symptoms along with the ones that I previously had. The first DX of Chiari I was still able to live my life and do whatever I wanted, it never affected me or slowed me down. Now, I live day to day not knowing how I am going to feel and experience episodes every day. They can appear whenever because sometimes I will be doing nothing and then an episode will appear. I will be out with my friends having a good time and unfortunately while I am out, I could have an episode. It's hard to track because they do not happen at a certain time or after I do something. The only thing I did notice was sometimes after I eat certain foods or have certain drinks that could trigger it. Literally I could be doing anything or nothing and they just come on. Sorry for the long messages...im a strange case!

[selmaS]

  Sorry  I am  confused....you  went  to  TCI   and  got   a Chiari DX...did  they say  you were not a surgical candidate?

  I know  not everyone  is, and that can leave us hanging wondering what to do next.....

  Did the Drs  at TCI give  you any  other DX?

   Have  your  symptoms changed since you were there??

[Jennifwe223]

At this point I am used to all of these doctors saying the same thing because they do not want to admit that they don't know. It is frustrating how doctors will NOT admit that they do not know. I will consider going back to the Chiari Institute it's closer to me than the city if I remain with no answers. I'm not a candidate for surgery though because I found a really good neurosurgeon in New York city but he said to speak to a neurologist first and I am not even a candidate for the surgery which in a way I am glad about. I was hopeful that this one might be the answers that I have been looking for but unfortunately he was not. I am actually going back to the city on Monday for the MRI and hopefully hear from my neurologist on tuesday whether he wants to see me for a follow up visit or not. It is a lot of traveling an hour each way but if I actually find something out it will be worth it :)  I am staying hopeful!  I appreciate all the prayers and thoughts! Hopefully other people on here as well are finding out answers and are able to get the help they need to be better or manage their symptoms!

[Elisaandbucky]

It sounds like a pretty frustrating situation when something very real is happening to you, and no one has a clue. I really hope you can get some answers.

You said that your diagnosis came from the Chiari Institute. Did you try to schedule a visit there?  I am not sure where you live, and if it is outside of the New York area, you will have to think of the expense of more travel. I hope you can learn something meaningful from the blood tests you had recently. There is a list of Chiari surgeons that is posted on this forum. If you do live outside of NY, I hope you can find one close to where you live. Let us know what you find out. You are in our thoughts and prayers.

[Jennifwe223]

As I was talking to him, I know he was not a Chiari specialist. I am in New York and went to see Dr. Peter Kim who is associated with Colombian Presbyterian hospital. I was diagnosed with it from the Chiari Institute. People are telling me to travel but I don't want to keep going to doctors who are supposedly Chiari specialists and it turns out to be a lie. I am going to wait for the blood work results come back and the MRI and then go from there. If something comes up okay if not then i will probably continue my search for other neurlogists and hope that I find a good one at some point.

[selmaS]

  Not sure where you are but this Dr is obviously not a Chiari specialist....Chiari does  affect the nerves so  yeah,it could  be a nerve  issue.....


Please do research on Drs  and  try another one,,,,sometimes it takes a  few visits to find one and  sometimes  we have to travel,

Hang  in there