Hi..
Throwing this out there..I am asking members who have EDS and POTS , as well as CM to share their stories with me..as I am wondering if some of my symptoms may be due to related CM conditions.
Thanks!
Lori
Thanks for your replies Emmaline and Beeba...
I know, Beeba..I wasn't very clear! Sorry...As many of you folks know I had decompression in 2008...2 cervical fusions..1 before decompression and one in 2010...all 3 surgeries had no complication..thank God..
Thant being said...I have an ongoing issue (s)..and I am not not sure what is causing what..as Emmaline said..which came 1st..chick or the egg??
Here are my Symptoms:
Upon getting up from sitting or laying...after aprroximately 3--45 seconds..I get extemely light headed..severe enough that I must reach out for something to hold on to.
Unbearable anxiety...which increases as the day goes on.
Blurred vision which has been getting worse...this comes and goes in regards to severity.
Trembling hands...muscle twitches in mostly left bicep area.
The above are Sx's that I am thinking are POTS and or EDS (?) I did not write my other symptoms..generalized pain, headache..ect..
As for hypermobility...I just had always thought I was limber..though , I had never been an athelete..I can still put both palms on the floor without bending my knees...pretty impressive for an ole gal like myself, right??LOL
I was diagnosed back in 2005, maybe a few years earlier with osteopenia..through bone density scan.
My thumbs are flexible...both can touch the forearm when done..I never tried this..but I saw somewhere..that this is common for EDS...I know one cannot go what one reads on the internet all the time..so, I am coming to you guys.!!
My understanding is that there is really nothing that can be done for EDS..so, my thought, for myself, is this: why bother to get an official diagnosis ? As for the POTS....if there is any way a proper Dx can be made and treatment with medication...I am for that.
I am just at this point where I cannot handle emotionally another diagnosis and another 'specialist'..yet, I want my cake and eat it too..I wan to feel better...but I don't want to go to a new doctor...I know this sounds child-like...But those of you who really know me..know my story...Besides my own health issues...I had my moms ,, then she died in my arms..and 5 weeks after her passing..my beloved brother in law was Dx'd with Stage 4 colon cancer...I helped care for him as well ..and we lost him this past July...
Emotionally..I am being a fool...but this is how I feel...emotionally...I cannot bear the thought of seeing the inside of a doctors office (other than my primary..who is more like family!) ..not to mention the inside of any hospital for testing..ect...
I have even put off a mammogram for over 1 yr now...they sent me a letter stating the mammo was questionable and that I needed it re-done in 6 mths..Well....that 6 mth mark , I believe was over at least one year ago...
Now..if a member here wrote what I just share ..about the mammo...I would 'nicely' BLAST her...GET THAT MAMMO DONE!!! I a an intelligent..well, kinda..woman...I am just done with my health stuff...yet, again, child-like...I wanna feel better...bear with me guys!!
Any input and support would be so appreciated!!
Thanks!
The Doctor who diagnosed me with Dysautonomia and HEDS simply put it this way ; you don't know what is causing your symptoms any day. It could be any of those conditions. I agreed with her. My HEDS symptoms were there years before and so were my POTS ( I was just recently formally diagnosed). I saw a Neurosurgeon who said that most of my symptoms right now are mostly Dysautonomia and the HEDS. Trying to manage those symptoms can help not cure . For example my fatigue, I don't know if it is Chiari, Dysautonomia, POTS or EDS related. The best advice I got was tackle one thing at a time.
Lori, I have diagnosed myself with dysautonomia. I just got lucky with my NL who wanted to prescribe a beta blocker for my continued “migraine” (she can’t bring herself around to say the word Chiari). The beta blocker has controlled my heart rate, and my blood pressure is not as low now either. I can understand not wanting to go for another diagnosis, but honestly this dysautonomia just comes with the CM territory. I think that if you get a medication that makes you feel a lot better you will probably spend a lot less time thinking about what’s wrong with you, and more time enjoying your life. The anxiety is the worst, you deserve to feel better.
Jenn