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December 3, 2012 at 9:33 am in reply to: excruiating ear pain,vertigo,loss of balance,and help Dr.Diana #3186mommyandmeParticipant
The doctor says she has orthostatic intolerance while the cardiologist says it’s hyperad. pots. So,it’s been a mixed diagnosis. Then the EDS diagnosis came 3 years after. When she was tested for mast cell she was not tested lying down. They did the blood work just like they did any other blood work. She does take xanax and she began this almost by accident. He gave it to her for a dental appointment and I found out it helped her to relax and “feel better” so I asked if she could take it everyday. So now she takes it all of the time.
We see him tomorrow and I’m going to ask him about the Diamox but I can’t make him prescribe it. I just know “something “needs to be done because she is miserable.
December 2, 2012 at 9:20 am in reply to: excruiating ear pain,vertigo,loss of balance,and help Dr.Diana #3181mommyandmeParticipant@Barbara–thank you for your reply. Although her MRI says normal those words just keep haunting me. I have not heard from her doctor yet but when I do I plan to bring this up and I’m trying to arm myself with evidence so I can show them that there are people that have issues with low-lying and chiari 0. I do believe something is terribly wrong. It’s been 7 days of headaches and its located in the back of her head near the base of her base of her skull. She has all the other problems too that I mentioned. I just wish the doctors would listen to me. I’m so frustrated with the entire medical profession right now. Does my daughter have to be dead either by suicide due to the pain or by her health before they listen???
December 1, 2012 at 8:22 pm in reply to: excruiating ear pain,vertigo,loss of balance,and help Dr.Diana #3177mommyandmeParticipantDr.Diana—we got the results of the MRI and it says normal. One thing however that keeps standing out to me is one line—-“somewhat low-lying cerebellar tonsils is a normal variation” Could this low lying be an issue with all of my daughter’s headaches,vomiting and restless legs etc…
November 30, 2012 at 3:55 pm in reply to: excruiating ear pain,vertigo,loss of balance,and help Dr.Diana #3171mommyandmeParticipantHi Dr.Diana:
My daughter takes a mess of drugs. She takes (are you ready???)
Florineff
Midodrine
Pindolol
Zrytec
Necon
Metformin
Prilosec
Klor-Con
Flexeril
Tramadol
Wellbrutrin
Alprazalam
Viatamin D OTC
B-12 OTC
MylantaShe was diagnosed with POTS in 2007 and EDS in 2011. She also has Acanthosis nigricans that’s why she takes the Metformin. For about a year now she’s been having swallowing issues and it may have even been longer than this but we were always blaming her chest pains on the EDS when now we see they are really from her swallowing issues.Last year she was tested for mast cell but it was at the high end of normal the doctor said. We had her on large doses of benedryl and zrytec but she had strange reactions to the drugs. She was having reactions like “wanting to run scissors across her hand” or go run in front of a car”. She said Mom I am a rational person and I know this is wrong as soon as we stopped this medicine within a day it subsided. I think she just had too much in her system but he cut it out completely. I did see changes in her symptoms though. These eating issues have been subtle. One day they seemed to have just been there and she couldn’t eat. We weren’t really paying much attention to them. Now she can’t eat at all and everything is getting stuck in her throat. She can’t drink anything cold,eat solids,spicy or she WILL go into a severe chest spasm. I will get that clear benedryl tomorrow and try it for her. I am willing to try anything that will bring her comfort. I am not complaining about her losing weight cause she did need to lose weight but she’s losing important nutrients,vitamins and she’s lost so much hair that it isn’t even funny. She’s not the same teenager she was 6 months ago. Today I had to take her for IV infusion because she was so weak she couldn’t even stand up.
She’s went to the ENT on Tuesday and they thought she had superior canal dehisence but that was ruled out but the pain is still there. The doctor sent her for an MRI yesterday but I won’t have the results yet for a few more days at least. I will definitely ask about the sella. My daughter is NOT on Diamox and I will try asking about it but her doctor isn’t one that likes to put what I ask for so I think the chances are going to be slim,but I’m sure going to try. I appreciate your assistance. I have to tell you that I had words about you with our doctor. He informed me that you were “just an opthamologist” and I said “Yes but she is an opthamologist who has POTS and EDS and a family who also has it so she has a vested interests in this disease!” Sorry,Dr.Diana but sometimes these doctors think they are too big for there britches with their diplomas and think they are above everyone else…and I am finding they are far from it! Thanks for breaking that barrier and being human.
mommyandmeParticipantAre you going to GBMC? I know that families can stay for a small fee at the Ronald McDonald House http://www.rmhcbaltimore.org/about-our-house/staying-at-the-house-faqs/. Also the closest hotel to GBMC would those on Charles street or in the towson area. http://www.roadsideamerica.com/hotels_motels/poi/65259.html Stay away from the Inner Harbor as this would be expensive. If you have any questions let me know. Does your son have EDS?
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