HopeSprings

musiclover - Just choose the age when symptoms started then. If you were having GB symptoms and were later diagnosed, I would assume problem began when symptoms started. If I add another question, people are going to have delete and re-vote again I believe. Ah! It's so hard to design a perfect poll!

Aussie - we seem to not be the typical GB patients.

12 of us so far and most were very young and I'll bet most were not fat (I wasn't for sure). I don't know if it means anything, but it's an interesting observation I think.

Aussie, yeah, you have a point - I don't know how common it is in the general population. Just noticed a lot of us here have had issues with it and at a young age. I was in my mid 20's.

I added an age question to see if this makes any difference. In order to add your age, you'd have to delete your original vote and vote again. Sorry!

Just curious because I've noticed over the years many people have had gall bladder surgery. I had gall bladder pain (under right ribs) on and off in my 20's for a few years and eventually attacks which felt like heart attacks. Turned out I had multiple gall stones and I then had my gall bladder removed. Just wondering how common (or not) it is for us.

• And the place would practically be a ghost town first thing in the morning and on hot days !

LOL, that's really funny! I can picture that.

I love 7th generation too. I use their dishsoap, dishwasher soap and spray cleaner - completely unscented. ALL (brand) fragrance free laundry detergent, soap is Aveeno fragrance free, deodorant is unscented, hairspray unscented etc. Thank goodness these products are so readily available nowadays. I worry about my children getting older and wanting to wear cologne or perfume - I have no idea what I'm gonna do. I wasn't always like this either Aimes. I used to wear perfume, loved scented candles, etc. had no issues whatsoever. The allergist said to just avoid chemicals and maybe the sensitivity will go away, but it's been years and no luck so far!

Bren, it stinks, but at the same time at least you have concrete answers now. I think I'd feel more peaceful if I at least knew what was going on! Doesn't the test you had done differentiate which type of EDS? The geneticist mentioned the skin biopsy, but said the blood test looks at the same thing -DNA- so the blood test is just as good and she didn't seem into skin biopsies. Let me guess... she's wrong? And when I said to her the test for classical only picks up 50% of cases, she didn't seem to know what I was talking about and wasn't worried about accuracy of the test. I don't understand - how does this Dr. not know basic information that I'm picking up so easily off the internet? I had this image of "Geneticist" as all knowing, super smart Doctor who would know so much and she doesn't! I'm still waiting for a price on the test - I have to pay 10% and as it stands they charge insurance 9000.00 which would make me responsible for 900.00. I can't afford that and especially not for a test that is only 50% reliable. I'm assuming the contracted rate is MUCH lower and if so, I may be able to afford it. Meanwhile my blood sits in the Doctor's office refrigerator. Sorry, that was a bit tangenty. This is just frustrating, it just feels like every.step.of.the.way I'm trodding through thick, thick mud - nothing is ever simple.

Another case of waiting for science to catch up to us. Peter Rowe has been connecting the dots between OI, CFS and EDS for quite some time. I just wonder if EDS is a more serious and involved condition than some Doctors realize.

They scanned their brains using a technique called diffusion tensor imaging, which highlights the bundles of nerves, or white matter, connecting brain regions. They compared these to scans of 20 veterans who were not deployed in the Gulf.

The images indicate that in GWS, these nerve bundles break down and may have trouble forming connections, a phenomenon that has not been associated with any other illness. This suggests that the brain circuitry, rather than any specific brain area, is disrupted in people with the condition. Veterans with the worst symptoms tended to have the most pronounced abnormalities in their white matter.

I want this test.

What are the doctors doing to us? We have to not blindly take things ---question everything and figure out if it makes sense or not. If there isn't scientific proof of a problem --don't create one, by causing more dysfunction in the body with a med.

Issie

YUP! Totally agree.

Geez, musiclover, that's crazy! I wonder what differentiates benign joint hypermobility syndrome from EDS?

I'm intolerant to all chemicals - cleaning supplies, perfumes, paints etc. It triggers symptoms in me immediately. I'd love to tell you what that's about, but I don't know! I know this is also common in CFS.

So last time I saw the geneticist she couldn't decide if I have EDS. Today I went back armed with pictures of myself doing Beighton moves and we counted somewhere between a 4 and a 6 - she couldn't decide about my legs which is why I don't know if it's a 4 or 6. Don't they have some way of measuring this?? I also found pictures online of EDS diagnosed people doing other moves and duplicated some of those to show her. I really never considered myself flexible, so was surprised that I can do many of these. I felt dumb bringing in these silly pictures, but she actually found them useful. She thought the uterine prolapse was significant and thinks some things with my skin point me to classical EDS, but STILL wouldn't officially diagnose me. She said I might just have lax ligaments. So apparently lax ligaments don't necessarily mean EDS?

My Veds test was negative and now we're testing for classical, even though I understand it may only pick up 50% of cases. She doesn't seem to get why I so desperately want an answer. I once again told her I'm trying to find the underlying cause of my POTS. She said not everyone with EDS has POTS. I said, I know, but an awful lot seem to - it has to mean something. She does think I have a connective tissue disease, but didn't elaborate or offer to look into that more. Before I left I wanted an answer and directly asked her if I have EDS or not. She said she needs to look at all her notes and she'll write up her opinion to be given to me at a later date. WHAT THE???? Help.

Mine felt internal too. I don't know Joann, like you said, just so many weird inexplicable symptoms.

When this first started I had what felt like a pouring sensation, mostly in my chest area. It was scary and I hadn't been diagnosed yet, so I had no clue what this feeling was. Looking back I wonder if it was pooling? I was telling the Dr. in the hospital it felt like I was bleeding internally. I'm sure I sounded crazy, but that's what it felt like. Is it like that at all?

This is from an information pamphlet by PoTS UK. I think it's cute and cleverly captures the pooling in legs/feet, racing heart and brain fog. I think he's got a tummy and headache as well!

http://www.potsuk.org/UserFiles/File/PoTS_UK_Flyer_v_2_Formatted_25_feb_2013_folding_line.pdf

And the creator of POTS stick person - if you scroll about halfway down the page, you'll see it.

http://www.stickmancommunications.blogspot.co.uk/

Wow, even volunteer jobs are hard to get now too? How about going through your town? Our little local paper always posts volunteer opportunities, like working at the animal shelter or shopping, helping, visiting elderly or housebound people. You could try asking at your town hall or local library too. I think it's great you're trying to do something - hope you find something you like!

Thanks all! Shona, that makes me feel better about the vocational expert. June is a while away, although in POTS time, not really!

Rich - could you please post or PM me with info about what Doctor in NJ is willing to try IVIG? Hope you get it worked out with insurance!

Oh, I totally get it! And congratulations on your beautiful brain. Along the same lines, my temporal bone was reported as "exquisitely normal" on a radiology report. My dumb, ringy, cloggy, pressure filled ear is exquisite?? Kind of like us, looking pretty good despite all the dysfunction. Speaking of temporal bone, this is something a neuro-otologist might look at. From my experience they deal a lot with dizzy people and investigate vestibular causes. I'm surprised you haven't seen one yet!

After being denied twice for SSDI, I hired an attorney for my appeal. She felt my case was strong enough to ask for a decision on the record and submitted the request about 3 weeks ago. I got a call today that they couldn't approve it on the record, but they scheduled my hearing date for early June. This is really good because I was originally looking at the end of the year, possibly into early 2014. She said they will have a vocational expert for the hearing. This makes me nervous because unless this expert understands POTS and knows me, how are they in a position to say what I can and can't do? Anyway, I'm just happy for the early hearing date and hoping for the best.

Makes you feel like a fraud when you tell the docs though and their neuro exams always come up "normal".

I know! As bad as this feels in real life, I don't understand why it doesn't show up on neuro exams.

Are you going to be getting IVIG Rich? Were they able to find your underlying cause?

What's going on? Hope everything will be ok.

OK, my brain is struggling. I think an injury to a nerve coming directly off the spine, like if a herniated disc was pressing on a nerve or something might show up on EMG, whereas the more widespread small fiber neuropathy or autonomic neuropathy would have to be diagnosed other ways - skin biopsy, QSART, Valsalva. I'm going to ask my POTS Dr. about CAN next time I see him. Please let us know what you learn, Joy.

I'm confused - what's the relationship between spine problems and neuropathy (the kind we have SFN)? And if you have autonomic neuropathy, is the heart (CAN) likely involved too?

I can't tolerate medication either, or alcohol or chemicals like Kelly mentioned. I think these sensitivities are all related somehow. This is also common in CFS. Makes treating this illness really difficult and after so many bad reactions, it's scary to try new medications. I have no idea what causes this.