Aa
Don’t know what to do..
My symptoms the lightheaded feeling, shortness of breath, and just feeling really unwell and disconnected are getting worse.. Is this signs of progression or worse? I don’t see the neuro until next week but I do have an appointment with my pcp this Thursday. I just don’t know if I can make it till then :(...
Just left the hospital a bit ago they did an ekg and blood work and sent me on my way my heart still hasn’t come below the 100 mark...
3 Comments
So it is not your heart, otherwise the testing would have shown something,and they would not have sent you home.
Were you tested for POTS?
Were you tested for POTS?
No I haven’t don’t they do a tilt table test? They’ve checked my blood pressure lying to sitting to standing and it never drops or anything.
Yes, the tilt table is one of the tests they do for POTS...and something I feel your Drs should rule out if they haven't already.
I’m at the hospital again I’m having heart palpitations elevated heart rate and shortness of breath I’m so worried... I’ve been working in the heat all day today and maybe that’s a contributing factor.. All day today every time I bend over I feel faint and short of breath :(.
1 Comments
The heat is definitely a factor.....
So I went to the doctor today and he pretty much said he’s gonna let the neurologist do everything like he doesn’t want any part in it.. I’m so short of breath today and it’s just getting worse every single day :(. So this is either a syrinix or brain stem compression causing the shortness of breath don’t you think?
10 Comments
From what I’ve read online this could cause respiratory failure I’m so worried....
Hi....there are many things that could be going on, my question is why didn't your Dr get you into see a NL ...I figured he could not treta you since it is a neurological issue.BUT he could refer you or consult with the NL to get you in sooner with the breathing issues.
Try to relax as stress will not help and could make symptoms increase.
Try to relax as stress will not help and could make symptoms increase.
I already have an appointment with a neurologist next week I guess that’s why he didn’t wanna do anything...
Well they do not go outside their area of expertise....so, the best he can do is chart your issues but since they are breathing issues he could have consulted with the NL that you are to see to maybe get you in sooner.
He probably won’t think my breathing issues could be caused by the chiari
Regardless, if you are having breathing issues they should be addressed by a medical professional if not a neurological issue, then a physiological approach and exam should be done.
It’s more than likely neurological because I’ve had a extensive cardio and pulmonary work up so I know it’s not my lungs or heart.
Selma have you ever heard of someone d with chiari with the same symptoms have you ever hear of some going into respiratory failure ?
The only person I heard of having respiratory issues has Ehlers Danlos Syndrome and it was not respiratory failure..but she is having major issues.
What causes the shortness of breath in EDS?
I see my PCP tomorrow and theirs so much I wanna mention to him but I don't wanna overwhelm him. Like the er seeing the chiari on a ct scan and everything. Should I tell him I need mri's of my head and full spine? I see a neurologist next week but I just wish my PCP could get these tests out of the way.
1 Comments
Tell your Dr about the Chiari and what other testing is needed.....and let him/her decide what involvement he/she wants to be part of.....your INS will determine a lot of that too...but your PCP should know what is going on.
Well I may be back to square one again.. I went to a different er awhile ago and they did a ct scan and the the doctor told the radiologist to look for chiari and it was normal. So idk what do now :(
5 Comments
Do you have a copy of that MRI?
The one I had 4 months ago?
Yes and I have and the report but it was normal. I have the ct scan report from a month ago that said there is extension of the cerebellar tonsils through the foramen magnum by approximately 5mm consistent with chiari I malformation.
I am asking if you have a copy of the MRI, not the report...it is good to have both, but the MRI on disk is important to have since not all Drs read the findings the same way, so the report is an opinion of the radiologist that did the testing....while he/she feels one way which is in the report . A Chiari specialist may see something different....so having a copy of the MRI on disk is important to have.
Chiari is not the herniation, but so many Drs want to see a herniation of 5mm's to classify it as Chiari, but Chiari is a malformation of the skull so, this is why I say you need more then the report.
Chiari is not the herniation, but so many Drs want to see a herniation of 5mm's to classify it as Chiari, but Chiari is a malformation of the skull so, this is why I say you need more then the report.
Yes I have the mri of my brain and spine on a disk.
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