Forum Replies Created
-
Posts
-
Dr. Diana,
What do you mean by borderline immune problems? Is there a certain problem you were referring? Just trying to “connect my dots” 🙂
I have to admit I was wondering if the shot set off inflammation throughout my body because it seems I pain a lot more pain in other places like both shoulders, both hips, my neck and my thumbs. I am happy to report though that the pain in my ankles is much better though! Very strange.Thank you both for responding!
I was doing quite a bit better after the zantac/zyterx and was to the point I could get to my home office upstairs without getting short of breath. About 2 days after the shots (1 in each ankle) my symptoms exploded. I don’t have the energy to even leave the house, let alone go upstairs to my office. My heart rate is erratic, I have constant headaches and nausea. I think I had mild POTS since I was 16 (now 46) but for the most part I was functioning fairly well. Then a couple of years ago I started getting a lot of injuries with ligament tears and ended up getting a lot of shots. I don’t remember the shots doing much then, but last Jan. I was getting a huge number of shots (2-3 every visit) due to a bad ankle injury that wasn’t healing. I am pretty sure that is where my decline began. By April I was incapacitated for the most part. I was just starting to get some semblance of a life back then a couple of weeks ago I got 2 shots and feel like my symptoms are out of control again. I will be weighing very heavily the pros and cons of corticosteroids next time. I think I would much rather deal with the pain.
I just got lab results back (via a patient portal) and will be seeing my doctor on Tuesday. My vitamin b 12 was greater than 2,000. I have always felt better when I took b12 sub lingual but I haven’t taken it for at least a couple of months. I would like to gather as much info as I can about a possible vitamin b12 deficiency vs. very high levels. I am pretty concerned what this dr will say as she is a new dr. for me. I also might add that my vitamin d was pretty low at 19 (values 30-150). I have been searching the net an haven’t found any real reliable information. I did watch the video that was posted (most of it before I got kicked off for some reason).
Would love to have more info on this.
Shellie
Thank you 🙂 your response was well timed as I am feeling really bad today and your comments were a great pick me up!
I live close to Canon City which is way south from Greeley. We are about 2 1/2 hrs from Denver. I have a good friend who lives in Greeley.
I have problems regulating my body temperature too. It seems I have a very narrow range of temperatures I am comfortable in. Too much either way and I am miserable. I think the heat is the worst though because the heat makes my heart rate go wild. At least in the cold I can put warmer clothes on…until I get too hot, lol.
It is funny you mention the tip of your nose, my husband teases me about it all the time too. Mostly the tip of my nose gets cold and he keeps telling me he is going to make me a “nose jacket”.
My hands get so hot that when I touch someone, it is uncomfortable for them. Most times I don’t know my hands are hot unless I put them together. I have noticed along the way that when I am feeling really bad, my hands are like this.
EDS99,
I was diagnosed with IC several years ago and had the same symptoms as you, the urgency and frequency. It would also wax and wan. I never thought the horrible pain I was having was IC pain because I didn’t have the same symptoms as I had before. It was really a surprise to me when my Dr. told me it was IC. I am back to the urgency and frequency. Apparently there are 2 different flavors, the pain or the frequency/urgency.I was diagnosed with IC by a pelvic pain specialist and she gave me a HUGE amount of things to try. I have a mixture of natural, herbal and prescription. I would be more than happy to share what she gave me. Most of the stuff I never saw on the internet through my research. The information she gave me is several pages, so it would be difficult to put into a post. The meds she prescribed me were; Atarax, Desipramine, NSAIDS (over the counter–max dosages, and vaginal Valium (to relax the pelvic floor). The Atarax helped me the most, but I needed almost everything she suggested to get the pain under control. I suffered for 4 months in excruciating pain and had no idea what was wrong. I couldn’t find a doctor who knew either. Finally I was referred to Dr. Ellis who knew what it was and was able to help me. I see her as a genius and an angel. I know the pain associated with IC and I don’t want to see anyone else suffer like I did and not help. I am more than happy to share my list if anyone is interested.
I have no idea if my great grandfather had EDS or not, but it is a possibility. I wish I had more medical information on him.
I have a really good ophthalmologist I have been seeing for years. She is very willing to learn about EDS. Matter of fact, I printed out the list that Dr. Diana suggested we take to our eye Dr and gave it to my Dr. My Dr. was very excited about it. She wanted to know where I got the information and I told her about this site and about Dr. Diana. She said she was going to check it out. She was very impressed with Dr. Diana’s list and she plans to do all the tests on it.
Shellie
Yes they were both spontaneous. I know my great grandfather was in a lot of pain right before it ruptured (i guess that would make sense). I didn’t know the same thing happened to my great uncle until recently so I don’t have many details about his eye other than it ruptured.
Shellie
Hi Lab-Scientist-Lady!
My great grandfather and great uncle actually lost their eye. The orbit ruptured. In my never ending research today, I found EDS VI (kyphoscoliosis type) that has been known to have orbit ruptures. It is extremely rare though. I don’t have much medical information about my great grandfather, but I do have a small amount on my great uncle believe it or not. It is a physician evaluation of my great uncle and my grandfather when they entered an orphanage around 1909-1911. The medical terminology is different than today and I would need to research it out. Maybe it would provide some clues.
I have an appointment with a geneticist in March 2014. It is such a long ways away…
