Maxine

Hi Janie,

I've been following your post and praying everything turns out OK. I'm so glad it's over for you, and it sounds like your going to be fine other then the usual ANS stuff. Sounds like another unexplained thing with POTS. I don't think the Doc should rule out a sympathetic surge with the H1N1 vaccine. with us, anything is possible--- Geeze, I took some liguid vitamin D at Costco when they were giving out samples, and about 10 minutes after it felt like my blood turned watery thin, and was pooling everywhere. My heart did flip flops, and I had a huge adrenaline surge. How weird is that...

I hope things continue to improve foe you,------------------meanwhile, your protected from H1N1---

Maxine :0)

Very good article.

I wish my friend could have benefited from this. She had a really aggressive form of MS. She was diagnosed in 1995, and she passed away in Oct. 2002.

I have lesions on my brain suggestive of MS, but I saw an MS doc who ruled it out. However, I still have a lot of the same symptoms. I don't have a lot of confidence in the MS doc. He's local, and most of the local docs here don't know much about POTS, EDS---------and apparently many other things. I've seen too many mistakes, as several docs missed my mothers cancer.

One neurologist failed to see my left vertebral artery was missing, and that I have some other vascular abnormalities with posterior cerebral arteries. NIH noticed this when I had an MRA there. The MRA I had locally said my brain vessles were "exquisite". I told my neurologist to take another look, and she said oops I do see this........ OK, then why did the radiologist miss it. She said he's in his 70s and isn't very good. OK, what else does he miss?

Maxine :0)

Firewatcher--------------the Brilliant and caring doctors are treated terribly by their peers--------I've seen it. It's truly very sad.

These men and woman have a lot more courage then the ignorant, apathetic, and arrogant doctors----and ONE DAY---what goes around will come around for them. What you do comes back to you.

Maxine :0)

This post made me think of my mom. Sure I have tons of pain-----pain as I type this, but nothing compared to what my mother went through.

She loved watching House----she really could have used his help. It's really sad how she was treated by the medical profession, and her illness was obvious.--------CANCER. Those doctors all had their brains removed apparently, because they didn't see her cancer had spread everywhere in her body until 48 hours before she died. They put her though so much..............It's much more then any of you will ever know........more then I will ever know.

She loved Hugh Laurie:

http://www.imdb.com/name/nm0491402/bio

Maxine :0)

Hi Janey,

My GI doc is really nice, and surprisingly he knew what EDS is. I don't think GI docs are that advanced here in the US in regards to the connection of EDS and GI issues. However, my GI doc thought my GI issues were connected to the EDS, but he just kind of faded away as far as any treatment plan goes. He wouldn't do a colonoscopy because of the POTS, and was afraid of sedation drug reactions. My PCP doesn't want me to get a regular colonoscopy because on my upper spine instability, fearing one false move could me IT for me.

I have a surgeon who's one of the nicest people I ever met in the medcial profession. She did my brother's bowel resection, and his incision was perfect! I just heard another woman speak about this surgeon, and she said her incision was perfect also. She was going to do my colonoscopy, and at one point we were ready to go, and then I got a virus. I though my streap throat might be back, and it turned out to be a very mild virus. I was so mad. They had to cancel it, as I needed to be in good shape for the colonoscopy. I felt so bad, and felt the surgeon might get tired of my junk and just drop me. My PCP feels I'm too unstable for a colonoscopy. He likes my surgeon and knows her well---he refers to her as a "good girl".

I'm really confused, and not sure what to do, as I am having more problems. I know this is really TMI, but when I pass gas it's really an odd smell, and this scares me-------------something doesn't feel right. Obviously my bowels aren't normal, and haven't been for years, but when I have any type of change it's scarey. Sorry for the graphic explanation, but this has worried me for a while. I'm surprised I don't have more pain and nausea. I'm bloated about 95% of the time, and the pain I do have is always on the right side of my abdomen, too low for gallbladder, and too high for apendix--------------and in the right spot of duodenum. This is where I have the 5cm diverticulum. They usually don't bother most people, but mine has been symptomatic twice with fever, and hihg white blood count. There was thickening of the 3rd and 4th portion of the duodenum, and some fat stranding which is telling of a past flare up.

Wednesday I'll be seeing that surgeon, and I'll discuss this with her. She is the most open minded of all my LOCAL doctors, and will most definately be happy to read anything on EDS/POTS ect. She's already read some of the information I have given her on POTS----or was it EDS? It might be both. I'm always pushing something.

I think my bowels stretch a lot also. I go days between "going", and I'm getting sick of it. No doubt my intestinal tone is poor. When I see my EDS geneticist, I will be discussing this. I'm sick of that little baby fist sticking in my right side of my gut feeling. I always get full very quickly when I eat. I can never eat a full sized meal. I haven't been able to do this for several years now.

It sounds like you have a very good gastro/neurologist, and it sounds like they care.

HUGS,

Maxine :0)

I'm glad everything went well for you Daisy, and I hope you nausea passes for you quickly. I'm never one to get this way much---(knock on wood)----this is surprising considering I have such slow bowels & constant bloat. Once in a while I wake up this way in the middle of the night.

You won't believe this, but the last time I vomited was in 2002 after my cervical spine surgery. The anesthesia made me sick, and after I got sick I felt like a million bucks----well almost. I'm afriad to get sick like that again because coughing, straining, or any pressure of any kind near my neck and cranial area causes lots of problems, more pain, and worsens my instability. That enlarged vertebral artery on the right scares me to--- .

I wish you speedy healing, and praying for NO COMPLICATIONS....

BIG HUG

Maxine :0)

I'm going to bring it up to Dr. Grubb next time I see him. I'm going to ask why I had such a bad reaction to the liquid vitamin D that COSTCO was demonstrating one day. I couldn't believe it. I was dizzy, losing my balance---and on the way home I felt like I could literally feel my blood running through my veins----(kind of like it does when I take a few sips of wine----but a lot worse).

My heart started to react by fluttering, then pounding. It was pretty bad, but thankfully it passed pretty quickly. We had my 5 year old granddaughter with us, and a perfectly fun time at COSTCO was ruined. I only last so long on me feet when out shopping, so I like to make the most of it. We love take out granddaughters to costco. When we took Kaela home, my son came out with little Mackenzie who is 2 years old, and all I could say to him was we had to get out of there and get hom asap. This is right about the time my heart started going crazy. I'm thinking why in the world would this happen from vitamin D????

Too weird.

Maxine :0)

I love good beer---imports usually. Now I can't tolerate even one of them. however, I do have a few sips of my son's beer every now and then.

He takes after me, and also loves imports.

I used to love margaritas, no wonder I liked so much salt on the rim. Sometimes I'll have a few sips of one of those too.

For some reason I have never tolerated wine well, even before I crashed with POTS. It made me feel a body rush, and like I could feel my blood running through my veins.

Maxine :0)

Sorry to hear your having gastro problems too----BIG HUG to you.

I have a large 5cm diverticuli in small bowel, and 3/4 of large bowel covered in diverticuli.

There's rarely a day when I feel completely comfortable with my gut. BLOAT, BLOAT, BLOAT!

I'm lucky to "go" twice a week. Things just pile up in there until they can't anymore, then finally........

I had a lower GI, and this is where they found the excessive diverticuli. They were screening for colon cancer because my brother had it, and in fact he didn't survive and passed away in Feb. It was really sad, and he fought a good battle....but it hit the other side of his colon and got into 17 lymph nodes.

He survived almost 3 years, and it got his liver. Docs thought a regular colonoscopy was too risky for me at the time, so a lower barium enema/lower GI with double contrast was done. They usually do this to screen older people, or people who have a twisted bowel who can't have a scope.

When I went to the NIH EDS study in April 2008, the geneticist who was running the study saw my GI films and said this was way too many diverticuli, and I needed a regular colonoscopy for a biopsy. My PCP wants to do a virutual, and cancelled the regular one I almost had done last year. I cancelled one other time due to being sick with a virus. So here I sit, I'm going to see the surgeon who was going to do my original colonoscopy on Wednesday next week to discuss what we are going to do. I haven't been stable at all with my other health issues, so I have no idea what to do-----------I'm worried about my GI stuff. I think my EDS has a lot to do with my digestive problems, and so did the geneticist at the EDS study, but she felt something else is going on also. My regular EDS geneticist thinks my GI problems are related also.

Maxine :0)

She was out of line acting that way. When she said, "Oh wait, I asked you that yesterday and regretted it"-----I would have said, "WAIT---but you haven't read my whole story in this book I brought you". I usually try to come up with something that will throw them off----basically letting them know I know their being rude, but I may as well have a little fun with it.

I can't believe she's carrying on about your daughter like this--------------FOUR! Why does she want a four year old to "harden up"!? Sounds like a real cold fish----that woman!.........

I don't have patience for idiots like that. Your being kind.

I guess hearing so many stories about people like this, and all my own struggles have made me "harden up".

Now I find it kind of easy to deal with ding dongs like this-----------I just give it back, but only so they get it, and no one else notices.

I'm not one to play games like this, but if someone wants to mess with me like this, I do whatever I need to do to keep my dignity.

Maxine :0)

HUGS to you Earthmother.

I so understand your situation------that IS a big OUCH.

It didn't seem to matter anyway-----(citing research, showing my medical records, or the MRG (medical resource guide from EDNF on EDS)-------------it's just more for them to dismiss. My brother looked at me like I was nuts when I suggested he get his youngest son checked for EDS because he's so floppy. I said he should atleast get a ultrasound of his aorta done.

Some of my family members have been really cruel, and it doesn't seem to matter to them that I went to one of the top research centers in the world (NIH) to have all of my health problems validated, and be part of a research study for EDS. The people at NIH must be nuts too! I'm sure Dr. Grubb hasn't had much fun being on our side all these years---------I can only imagine how some of his peers may act. It takes courage for doctors to stick by us "nutty folks". Well, you know what I mean, nutty in their minds anyway. My psychologist wrote up a very nice thoughtful report for SSDI proving that any psychological problems I MAY have are seconday to my PHYSICAL health problems (his words), and of course from the continuous ignorance by anyone who doesn't know any better because they still live in a neanderthal world---(my words, not his). He put this in more of a diplomatic tone, which was very kind of him.

My other brother is much better about it, and his ex-fiance was wonderful. She has a sister diagnosed with NCS---and possible POTS. Her sister is a beautiful person too. It's so sad they broke up. His new girlfriend seems COLD.

It's bad enough we have to still deal with an ignorant medical society-----it's worse when there's virtually no family support---a much needed cushion to land on when we're feeling beaten down by the world.

EM, you have a stong mind, strong will, and a good attitude, and this will get you through. I'm glad you have this place to come to.

Maxine :0)

Wow, I'm glad your Ok now, and it's reassuring to hear you have the pacemaker now.

I wonder if this is what happens to me when I get that sudden THUMP feeling like my heart is stopping----vasovagal response.

I've only had this happen when I push way beyond my limits, otherwise I usually ge the usual tachycardia, lightheaded, OI----extreme body weakness ect.

HUGS to you.

Maxine :0)

Sending good thoughts and prayers your way.

Let us know how your doing when you feel up to it.

BIG HUG

Maxine :0)

Wow Caron----------good for you!

Glad she was fired!

Maxine :0)

For some reason I have trouble taking vitamin D. It makes me feel fluish, and aggravates POTS symptoms.

My levels are -3-----yes that's right, this was the last reading I got. I'm not sure what to do. My PCP was more interested why mine was so very low like this. I did make a point to get out in the sun on cooler days, but it didn't make any difference, and ended up even lower in my levels of vitamin D3. however, my calcium levels are normal, so I'm not sure how I'm absorbing it. Bone density test at NIH was fine also. This was just done when I was at the EDS study at NIH in April 2008. The only thing found was some osteopenia in hips. Even though I have all kinds of spine problems, the bone density was good there. All spine instability is related to my EDS.

The cancer risk is especially scary, and my family history of cancer is scarier yet.

The ball just gets dropped with me all the time. I'm just getting tired.

I don't even want to hear about it anymore.

Maxine :0)

Crohns is pretty serious, and you have every reason to be MORE then annoyed.

Thankfully your prescription is covered, I can't imagine the poor soul diagnosed with crohns who can't affort this or doesn't have prescription coverage.

I feel very fortunate to have prescription coverage, but not all have great coverage.

Sending you a BIG HUG for having to dealing with yet another diagnosis.

Maxine :0)

Different things work for different people.

Scary though-----------cigarettes have so many different chemicals that cause cancer, I think I would find other ways to constrict my blood vessels. Nicotine constricts blood vessels, and it's true, some people I know said they feel better when they smoke.

I smoked for about 15 years, and I quit in 1990. I quit because smoking aggravated my symptoms---I had spells of tachycardia at the time, and had no idea what was wrong, and the only thing doctors could attribute it to was a MVP. However, a couple years later I was told I didn't have MVP. I was officially diagnosed with MVP back in 1982, and after suffering panic attacks for a few months in late 1981 and part of 1982, I was symptom free for the most part until 1990. After a bad spell in 1990 I was put on beta blockers that controlled my symptoms. I had no other symptoms other then mild fatigue and fluish feeling along with tachycardia in late 1990. The fatigue and fluish feeling went away in about three months, but the tachycardia still had to be controlled with beta blockers. I was able to cut back on the BBs, but in late 2000 I crashed very badly, and you can see what happened after that in my signature line.

I can't imagine any type of smoking as an actual treatment for POTS. However, it does make some people feel relief in symptoms probably from the constriction of blood vessels. I think when I was having panic attacks from the POTS back before I knew it was POTS my smoking definately made me feel worse. Now that I don't really experience the panic attack type symptoms, I wonder if a smoke would help in my blood pooling? I sure wouldn't start back up, but I do wonder.

MY brother who passed away smoked, and he had many POTS symptoms for years. I often wonder if smoking made him feel better. He smoked more when he was playing in gigs with the band. He would stand for long periods either playing base or lead----sometimes acoustic guitar. He used to have such bad spells of tachycardia, and docs never found anything wrong with his heart.

Who knows if the smoking caused his colon cancer. I just know I quit at the time I was having panic attacks.

My theory is that my blood vessels were constricting big time back then trying to correct the blood pooling I didn't know I had. I remember feeling a WHOOOOOOSH in my gut every time before the attacks hit me. It almost felt like I could feel my blood pool---especially in my abdomen. I suppose the nicotine aggravated my symptoms at the time-----but might not now.

My lungs have mild institial marking on them now, and I'm very scared of the cancer in our family. Smoking is just dangerious.

Maxine :0)

This is a tough position to be in---I can't imagine.

I'm sorry I can't help.

Hopefully your doctor can help you find the right balance.

Sending you a BIG HUG.

Maxine :0)

I saw this post a couple days ago, and I had a lot going on this week.

I'm really losing my patience with these doctors, and they should know better to say such a thing, but yet I still see it happening.

Lets see, eight years have gone by since I have been diagnosed with POTS, and later the spine problems, and lastly the EDS.

My EDS wasn't diagnosed until a series of events took place to finally take me to a geneticist in 2006. I was 47 years old!

EDS can cause so many things to go wrong with our bodies. One thing leads to another........and another. Some days it seems endless, and it can really be a nightmare. Only those who have a connective tissue disorder can relate. NOT EVEN THE CLEVELAND CLINIC GETS IT! I'm still working with doctors there to get them to understand my cervical/cranial area REALLY IS falling apart, and really is unstable. the EDS geneticist has tried to find someone to help me other then the orthopedic surgeon who also validated the instability, but I need a neurosurgeon due to the vascular issues in that area, and the cleveland clinic doesn't believe there IS an ISSUE even though I have fluid buildup in mastoid area with no explanation---no history of ear infections.

My friend had surgery in August, and DIED of a ruptured aorta just after surgery. She went undiagnosed of her connective disorder until she was 40. She was 41 when she died. She was diagnosed with hypermobile EDS. What does this say?! It means this this is serious, and needs to be taken seriously no matter what age someone is before they finally get a diagnosis. EDS is grossly UNDERDIAGNOSED. Many people go years with the secondary effects of EDS before they get diagnosed, and sometimes it's too late. My friend wasn't taken seriously when she went to three different ERs, and at one point they considered her to have a PRIMARY anxiety problem because her BPs were running 180/120. Then her pulse pressures were running narrow----big red flag, but they still didn't take her seriously.

Check out this article;

"Centre for Rheumatology, University College Hospital, 3rd Floor Central, 250 Euston Road, London, NW1 2PQ, United Kingdom. r.grahame@ucl.ac.uk

Joint hypermobility syndrome (JHS) was initially defined as the occurrence of musculoskeletal symptoms in the presence of joint laxity and hypermobility in otherwise healthy individuals. It is now perceived as a commonly overlooked, underdiagnosed, multifaceted, and multisystemic heritable disorder of connective tissue (HDCT), which shares many of the phenotypic features of other HDCTs such as Marfan syndrome and Ehlers-Danlos syndrome. Whereas the additional flexibility can confer benefits in terms of mobility and agility, adverse effects of tissue laxity and fragility can give rise to clinical consequences that resonate far beyond the confines of the musculoskeletal system. There is hardly a clinical specialty to be found that is not touched in one way or another by JHS. Over the past decade, it has become evident that of all the complications that may arise in JHS, chronic pain is arguably the most menacing and difficult to treat.

PMID: 19889283 [PubMed - in process]"

WHO CARES WHAT AGE YOU ARE, The point is that you are diagnosed with a connective tissue disorder that complicates things and contributes to your ANS dysfunction.

I really wish some of these ignorant docs would do a little research before they open up their big flapper.

Maxine :0)

Bloat is my middle name--------waiting for insurance to clear me for virtual colonoscopy. Not stable enough for reg. colonoscopy lately. I have so many problems with bowels----for years and years. Excessive diverticuli---way to many covering 3/4 of bowel. I have a really big one in upper small bowel measuring 5cm.

I often tell my husband I feel pregnant by evening. If I lay down often during the day the bloat isn't as bad.

Maxine :0)

YAY! I'm so glad you have a better working Colon. How nice it must be to have that old gut discomfort relieved.

It sounds like you have a good surgeon, and that Dr. Grubb has been a big blessing in all this too.

I have colon problems too, and wish I had bowels that worked. Too many diverticuli (3/4 of colon), and I don't know how I'm not worse off. I'm lucky to go twice a week. Sorry, I know this is graphic--- . I know how sick of it you must have been. I'm supposed to get a virtual colonoscopy done due to risks with the conventional, but my PCP was waiting for insurance approval.

I hope you continue to feel better, and I'm praying the infection was caused by your colon and you won't be dealing with that anymore.

Nothing worse then a bloated uncomfortable belly daily. Feeling this way on top of everything else is really awful to say the least.

I'm glad to hear Dr. Dirty has been caught, and I hope he's never able to do that again. I'm so sorry you had to go through that, and I'm glad you have had a good expereince to help you build your trust again with Docs.

HUGS to you.

Maxine :0)

Maisie87,

Have you seen an ENT (eras, nose, throat,) specialist? Maybe check out to see if you have an ear problem---possibly inner ear causing the dizziness.

I know another woman who was diagnosed with POTs and had the exact same experience, and it turned out she had an inner ear problem. Once this was treated she felt a lot better.

WELCOME to the forum!

Maxine :0)

I'm very simular to skyblu in how I function. I love those days when I feel almost normal.

I have exercise intolerance, so any exercise has to be done in small bits.

There's times I feel pretty good and I want to go out and do everything, but then when I do my switch goes off if I don't pay attention to the warning signs my body gives me.

Today could be better------this virus I'm fighting is making me cough so hard it's beating the back of my head and neck up, and I can actually feel everything crunching and moving -----------------it's so hard to explain this-----everything is just too mobile--- .

I hope you have more good days coming------

Maxine :0)

My neurologist told me about this, and I was pretty impressed that he was even interested. He's the new neurologist that I'm seeing at the Cleveland Clinic.

Here's what I posted a while ago.

http://dinet.ipbhost.com/index.php?showtop...eds+antibiotics

Pretty Serious stuff.

Maxine :0)

Tachy, I think the ER doctors did know. The trouble is that people with EDS aren't taken seriously about how serious it can be, and that vascular complications can happen with ALL forms of EDS, although type IV/vascular type the chances are much more likely.

I don't know if her death could have been prevented, she was treated very poorly that I question the ethics of all of those hospitals who blew her symptoms off. You would think that one of the three hospitals would have had one of the docs GET IT. Her BPs were VERY HIGH with very narrow pulse pressures, and this was completely out of her usual symptoms. She was so upset those weeks. Her EDs doc did do a ECHO and ultrasound of her heart and aorta a year prevous to this. However, her aorta was thinning, and I don't think the ECHO picked this up. When she went to the ERs, they could have done an abdominal CT because she complained of abdominal pain, and pain in her mid back.

If the ER docs would have known more about EDS, taken her physical complaints seriously, and the obvious HI BP issue in their face, they would have done a CT scan and caught it, or at least I assume they would. She could have been taken to the Cleveland Clinic. However, she was there a few weeks before this to see a spine surgeon, and they didn't know much about EDS, and I can't find much on their website on EDS. I went there to see spine surgeons for my cervical/cranail instability, fluid in mastoid area of skull but no history of middle ear infection, left vertebral artery missing, blown disk on thoracic spine, and other spine issues.

These surgeons didn't know much about EDS either, and one surgeon was very arrogant and dimissive. I stood up to him, and I informed him that he needs to look at the DVD from EDNF on vascular EDS, as surgeons especially need to know about the vascular complications, and how they are handled if they occur. He said "duly noted" in a very condescending manner. I "handled" the situation, and I continue to talk with the doctors at the Cleveland Clinic about EDS. The other doctors have been more receptive, and one neurologist has taken me on as a regular patient.

Cat Lady I have been hypermoblie all my life, and had I known about my EDs back then I would have never stood on my head and folded myself up into a box. As a kid I used to show off all the positions I could put my body into. As I became a teenager, and up to mid 20s, I workd various jobs that were physical, and I know this contributed to a lot of my spine problems combined with the EDS. Retrieving grocery carts was the worst on me. I ended up working in commercial collections in an office after that, and eventually became an office manager over the next 16 years while going back to college. I had to drop out of college due to crashing with my POTS---and at this time still didn't know I had EDS. I went back to college after cervical spine surgery and complete a certificate program in medical coding. I hope to work again someday, but for now I'm on disability.

Right now I'm battling a virus, and coughing is horrible on my neck.

Doctors need to look outside the box, and LISTEN to thier patients. I notice a lot of discrimination taking place, especially on woman-----and it's especially prevalent among overweight woman, many of them being treated with egregious disrespect.

Maxine :0)