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charlie1Participant
Oh my Goodness!! Allyb I’m in tears. What a powerful and poignant story is told through your poetry. Don’t ever stop writing. You are ONE TALENTED LADY!!
And I’m sorry about the boots. Breaks my heart ๐ Sending you a Huge Hug right now.charlie1ParticipantI’m sorry Janelle but I can’t read MRI’s ! I do want to say though that I feel your pain.Most people would think it strange to hear you’re frustrated with the news that your results show your brain to be normal. But I know what you mean… you just want answers. Knowing that significant issues can be missed or disregarded by radiologists doesn’t help us. Wishing you the best in your quest for answers and better health.
Charliecharlie1ParticipantI forget what the exact number was but my B12 was off the charts! My doctor immediately told me to get off supplements but I informed him I wasn’t on any! I was told not to take any and he wanted to keep an eye on the level, especially because at the time I had such strange, undiagnosed symptoms that had me in the hospital more than once. My memory is shot now b/c of this illness but I think he was concerned about something to do with my liver??
Oh well, I’ve got enough other things on my plate now!charlie1ParticipantI had blood work done at the onset of my POTS/DYSAUTONOMIA symptoms. The only abnormal results were Neutropenia, LO ferritin and VERY HI B12 (I was not on B12 supplements). The ferritin was corrected but the B12 continued to be HI until about 8 months ago. I don’t know why it was HI in the first place but it does seem unusual to have too much B12 instead of not enough. Also, I now have chronic mild Neutropenia.
charlie1ParticipantTotally agreed!!!! They’re very special people ๐
Did you fly back and forth in one day…today?
Sleep well!!charlie1ParticipantElaine, I’m glad that you have an appointment at Total Eye Care! I was just there last week and was nervous about the flying too(2 1/2 hr flight). I was fortunate not to run into any issues with the flight or the 3 day stay but it did wear me out. It took 3 days to get back to my ‘normal’ unhealthy self once back home ๐
You might find the testing day to be long but it’s SO WORTH IT!
You won’t be sorry!! All the best!
Charliecharlie1ParticipantHi Shondra,
Ya it’s strange you weren’t in the 50% of classical EDS’ers that have the marker seeing as you know their are others in your family with it. I don’t know of anyone in my family, perhaps my mom. Agreed.. it will be nice once markers are discovered for all eds and also for other mysterious/invisible illnesses.23andMe- All in all, it was interesting but not sure how valuable it will be yet. I’ve only just looked it over this evening. It’s quite a lot of material to read!
There are 23 disorders that I have an increased risk of getting. I have no idea if that’s unusual or not but some of them aren’t very nice. It also shows that I have a decreased risk of getting 38 others that are listed. Then I have average odds of getting the rest of the disorders they list. They ‘locked’ Alzheimers and Parkinsons as they want you to be sure you want to see those results. Clicking a button will bring me those results but I’ve not done so yet!
charlie1ParticipantThanks Shonda! Will view the video at first opportunity ๐
charlie1ParticipantHi Shondra. Yes I just had the 23andMe gene kit picked up for analysis a few days ago! Other than saying there were some glitches with international shipping (all got worked out), I don’t have an opinion yet on how I feel about the testing.
Hoping it will provide some insight into what might be going on with my health and of course, hoping to learn if there are genetic disorders my children should be made aware of.charlie1ParticipantHi Kenzie. I love horse too!! Beautiful artwork ๐
charlie1ParticipantHi, I don’t think I’m going to have that problem with my family (children and siblings)! They are amazed at my strange and many health issues over the years and especially during the last 18 months when POTS symptoms came on. They do not want my life! They’re scared to have anything I get diagnosed with and I’m sure they’ll jump at the chance to have their own health investigated to rule out any of the same diagnosis’.
My kids are adults now but still top priority for me! I don’t take them to doctors anymore (!) but they are keenly aware of what’s going on with me and how it may in time affect them as well. They, along with my hubby, are my very supportive partners during this mysterious health journey.Today I received my 23andME gene kit and am eager to get that sent away for analysis. It will be good to know which disorders I may be susceptible to which in turn might be passed on to my kids.
charlie1ParticipantHi there LabsciLady! I have never had these things happen to me before other than just recently. The tongue swelling to the point of interfering with speech was scary and I don’t want it to happen again! I read its very rare, but since I’ve upped my midodrine dose lately, I’m thinking its possible I reacted to that. Pretty unlikely though b/c I’ve been increasing it slowly over the past month. Started at 2.5 mg 2x day (which did not increase bp at all) and presently I’m at 5.0 2x/day so that’s pretty low still. I’m grasping at straws until I get an app’t with my doctor hoping she’ll refer me to an immunologist.
As for the bug bite, it wasn’t a mosquito. The very small bite never swelled at all even though I would itch it constantly. The redness and swelling occurred beside the bite and was about 20x larger than the bite itself!
Hard to say what’s going on.charlie1ParticipantHi Denise. I’m sorry this is happening to your son. I have a 25 yr. old daughter so I know how you must feel. We don’t want our loved ones experiencing things such as this, at any age. Not trusting the local professionals is an issue all on its own! Been there, still there…
All the best to both of you while you travel this journey.
charlie1ParticipantHi JJ. I also am hypersensitive to smells and have been for as long as I can remember. Often, I get headaches or migraines b/c of perfume, smoke (even the smell of smoked cold-cuts!), vinyl, new leather, rubber, glue, and so many other things. I’ve also felt my lips and tongue start to tingle and a few times my throat has felt swollen during my strange ‘neurological episodes’ but this almost always happens when my blood pressure is extremely low. Maybe our hypersensitivity to scents is related to mast cell activation?
August 3, 2013 at 1:13 pm in reply to: pulse pressure of 7 preceded by varying bp results and usual bizarre symptoms today. #4039charlie1ParticipantHi dab78- Ya, I don’t understand what’s happening to me. I can feel ‘it’ coming on and then BAM, I suddenly feel and act like I’m drunk plus I’ll get lots of head pressure but not really a headache. It’s crazy. It’s full blown out of my mind DRUNK! Unfortunately, I don’t get the nice warm glow like I would with a vodka/ice tea. Those days are long over ๐
I’ve responded very well to Mestinon but for the tachycardia issues only.
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