I Missed All Of You---trying To Catch Up

[Maxine]

Hi everyone,

I have had quite a time logging in. First I forgot my password, and when I got my new lap top computer I tried to get a new one. Nina tried to help me, but for some reason my computer was not receiving e-mails, or so I thought---as my other computer wasn't either. The only thing I can think is that when I changed my new user name and password a while ago----I think I also blocked e-mails from the forum.

I was really paranoid after a nurse stalked me on this forum-----so I may have blocked e-mails, but I can't remember. Nina mentioned that it may be my computer---then I started to remember. I e-mailed Michelle too---and she forwarded my e-mails to Nina. I feel bad, because I mentioned that maybe I'm not welcome here anymore----and the whole time they were trying to help----------------Thanks so much for your patience Nina----and for dealing with my paranoid ramblings.

A lot has been going on---and I think you all know that I went to Cincinnati Childrens Hospital to see a Geneticist/EDS specialist, and their cardiologist. They gave me the "official" EDS diagnosis. I was also diagnosed previously by the chiari institute, and the Cleveland Clinic, but I wanted to see a specialist in EDS.

Anyway---the geneticist was mostly concerned with my upper cervical spine, and cranial instability---as the EDS will aggrivate this further---so he recommended no physical activity other then using a kick board in a pool----no upper body usage at all, other then using 2 pound weights to help with toning. Keeping things toned with EDS is very important----but I have a catch 22 due to an unusually supple spine/instability.

Then I had my Dr. Grubb appointment----he was very kind, and understood the severity of my spine issues, and how it impacts my POTS. But what we focused on was getting something done to rule out coronary artery disease because of the long standing low HDL cholesterol----and the fact that I have so much upper back pain that radiates to my chest---and of course my arm numbness----I wouldn't know if my pain would be related to CAD. So we went with the newer 64 slice CT scan to scan my heart and arteries. Well I went to a local----large cardiac facility that has this type of CT scan. They had to stop the test because I couldn't get my heart rate down to 60----even on double the beta blockers, and more IV BB. I even took double the dose of klonopin in case it was anxiety. They wanted to add more BB, but I told them It was starting to affect my breathing----so NO MORE TEST. My heart rate hovered in the 90s, and they need to HR to be around 60 bpm to get a decent picture.

Anyway, the nurses did sort of hover around me looking at their watches, and I could hear heart my HR on the monitor----the nurses were pacing---the brights lights----uggg, just too much stimulation. I called the Universtiy of Michigan, as they have the 64 slice CT scan too. They have had this scan for a while now, and have added more, and they have experts who are very familiar with cardiac scanning, and they said they are very detailed in getting patient history ect. They are familiar with the many complications from other illness they may interfere with this CT scan----and more importantly they are familiar with POTS and other forms of ANS dysfunction---- They will call me next week, and they will get me in by the following week.

Also, I think I may have a local neurologist who may understand the complications from having POTS, chiari related conditions/spinal instability, and the EDS----how they all can affect the other. She looked at my last brain MRI because I had some lesions in the periventricular area, and she said she saw one on the medulla/brain stem----but wasn't positive---and it may be a Syringomyalia----( a fluid filled cyst of cavity) in the spinal cord, but this would be near the brain stem---(not a good place for this). Hopefully it's not a demyelination process (MS) going on, as this was mentioned in the radiology report. I see her again on the 18th. I have more numbness---especially feet, arms and hands/fingers. The pain has been intense at times, and I now have something in my mid spine that is really sore, and my husband thought something about the size of a pencel eraser was sticking out.

So I guess it's kind of good that I'm getting some coordination of my medical care---but still have more to deal with---namely the colonoscopy. The surgeon and I decided to go with the conventional---as 99% of my family has polyups--(brother recently diagnosed with colon cancer)----so the virtual colonoscopy might be a waste of time. She thinks I should be admitted for the the prep because she said my meds won't absord during the prep, and that I will need IV administration of the meds, and also IV to prevent dehydration----I hope I can get a private room---

This is basically what has been going on.............I missed you all.....Glad to be back----

Maxine

[DancingLight]

hello maxine!!!!

i was wondering where you were!!!!! i was getting worried!

i hope you will be able to keep logging on this time around!!!!

i have NO words of wisdom in the health dep't...but it sounds like you are plugging along and continuing to be proactive and search for a team of doctors that will work to help you...

later alligator!

emily

p.s. did you know that they have all these pink panther music cds out right now??? whenever i see them in the flyers i think of you!

[Lukkychrm42]

I'm glad you're back, I remember you were going to the geneticist...

Well, I am glad you've got people who are willing to work with you, and I hope they can figure out what's going on and what can be done about it.

I can't believe you got stalked by a nurse! Yikes!

I'll be sending lots of hugs your way.

[dizzygirl]

MAXINE!! good to see you hear girly!

you do have alot going on.. and that bites.. but im glad that you are finally being taken SERIOUSLY!!.. its about time right? I hope that they can find something that will make you feel better dear.. so your not in so much pain and misery all the time..

Just wanted you to know that im still here for you and rooting for you..even though ive been quiet these days ..take care and good luck..!

love and hugs

dizz

[Jacquie802]

Hey, welcome back..I was wondering where you had gone. I am glad that you are starting to get some answers finally, it's about time!!! Keep us updated on your apptmts..I wish you the best of luck and I hope there's some treatments out there to help you!

Jacquie

[Guest sonotech]

You just have SO much to deal with yet you try and stay so positive.....I am impresed. It also sound like you may finally have a "team" of doctors that really understands what you are dealing with and THATS great! Hang in there.....sounds like you may be getting a few steps closer to more "answers".

[Maxine]

Thanks for the replies girls!

I'm up a little early, but I will definately be going back to sleep. I had a bad dream, and it woke me up at 5:12am. I got up and took my BP and HR because it felt like my heart was racing-----my HR was only 64 bpm, and my BP was 112 over 69-------pretty normal--- When I took it standing it was OK----so I'm not sure what is going on. However, when I sat back down it still felt like my heart was racing--------I figured it out----my spine was buzzing again. I get this vibrating/buzzing sensation quite a bit lately, and I'm starting to feel it in my hands.

POTS wise I'm not doing that bad----all my symtoms get worse with activity or when I have to go out and sit up for an extended period ----like when going to a wedding---visiting someone ect.---basically going somewhere where I can't lean back and take the weight of my head off my spine. Yesterday I went shopping at Kohl's with a friend who also has POTS. As you can imagine---time was limited for us---LOL. For some reason I do better in Kohl's-----the lighting is not as bright, so I last a little longer. Ahhh----a little enjoyment shopping----something rare for us----

She had to keep moving to prevent blood pooling in her legs and feeling near syncope----I need to do the same thing, but if I move too fast then my spine stuff gets bad. When this happens I crash----and quickly. It worked out, but barely. As soon as I hit the cold air when leaving the store---my body couldn't handle it----I was crashing. I'm discovering that my problems with ANS dysfunction are probably related to the EDS and spine issues----and the EDS specialist thought there was a relation also.

Did you ever go out and feel somewhat OK---and wonder how you keep going---then you sit and crash really bad after you sit? Also, I always thought---"I'm not one of the POTS people who has blood pooling". Wrong! I decided to start looking at my legs in the shower-----PURPLE THEY ARE--- I never wear shorts, and just assumed I didn't have pooling. Dr. Grubb also thought I may have abdominal pooling as well. I guess that is what the EDS specialist meant when he said I have EDS with vascular involvement----and skin fragility. The good news is that I lost about 15 pounds---probably from slowly cutting refined carbs in addition to less of an appetite in the evening. In the evening I get a little queasy---especially if I over do it, and have a lot of pain.

I hope to get these other tests that aren't related to my ANS/EDS/chiari/spine related issues over with in the next couple of months----then this will clear a large load of anxiety away.

Emily----would you believe with my love of the pink panther I only one have small pink panther figurine that is a little rubber one that bends like gumby?----you know, with the little wires inside them that makes them bend. My son gave it too me.

Thanks for your replies and support. Your all great people!

Maxine :0)

[jenwclark]

I'm enjoying the image of you and your POTSy friend out shopping. I'm so glad you were both able to do it.

I also have those times when I feel like I'm fine as long as I keep going, but I crash as soon as I relax. In fact, if I've been pushing for several days (e.g. during exams), it usually takes 24 hours after the last exam for me to crash. But, oh, what a crash it is!

I do hope you get all these tests taken care of soon so you can focus on your long term care. I'm glad you managed to get back on the board.

spike