Maxine

Thank blhorn!

Right now the only thing left is a tiny scar-----AND believe it or not irratation where I put a bandaid. How crazy is that?! It itches there a bit, and it developed a rash shaped like the bandaid.

I have taken my my temperature for about 7 days, and it was always around 97.5----normal range.

My hands are so dry from using peroxide, alcohol, and antibiotic ointment. The ointment was only used on the small wound. My hands got so dry from washing them so much------------I bought some Honey House Naturals Bee Bar. It's a bar of bee's wax with lavender. I'll be using this to get some moisture back into my hands.

I did wash my wound right away, but I can understand why a doc would want to prescribe antibiotics. Fortunately, it looks like it's healing well. (knock on wood).

She's already looking better. She is on a special diet along with her medication to kill off her thyroid. She loves the new food, and eats a lot of it. She ate her Iams before, but this food has less protein, and more fat. The vet said she has to have less protein due to her low functioning kidneys. She said her kidneys were small.

Take care----and thanks again!

Maxine :0)

Thanks Sue1234!

Wow, what an experience for you!..........

Take care,

Maxine :0)

Babette! Wow, I'm sorry this happened to you and your daughter! Let me know how you come out after going to the doc or ER.

Yes, a stray cat is a different story. I'll be saying a prayer for you both to get through this without any problems.

Thanks Cat Lady----------she's a good girl, she was just very sore. My nephew was petting her, and she doesn't like young kids. He's really 20 years old, but teenagers have jerky moves sometimes startling her. She doesn't like small children-----ages 3 to 10...somewhere around there, so I don't know why she nipped at my nephew Jeremy. I think she was a bit spooked about the whole vet visit. It's weird because she was very good at the vet, and the Doc there said she didn't even try to bite them. Maybe she was mad because I took her there and they poked her. She's never nipped anyone---not even young kids. She would hiss at little kids, and I think I know why. When we got her as a kitten, the tip of her tail was broken. They had a house full of little toddlers----it must have been a day care. One of the kids must have broken her tail.

I hope you and your daughter are doing OK now Babette.

HUGS to all of you who were so kind to offer your suggestions. The wound is almost gone, so I didn't call the doc. I think my constant cleaning, and the fact that I cleaned it right away, then used peroxide, and alcohol helped. The antibiotics may have helped too, but sometimes docs say topical antibiotics keep the wound too moist, and this is an invitation for more bacteria.

Maxine :0)

If this happens while you're standing up moving about, it could be that you blood was already pooling, and was not circulating enough around your heart-----------------BINGO----your heart said, "wait a minute, where's the blood?" So it started flip flooping around until you sat down. Once you're sitting, the blood stops pooling as much and your heart stops flipping out. Just a thought...... Of course if you push too far, you could get both the pre-syncope amd the heart flip flops at once. I usually get the heart flip flops as a warning that I'm not paying attention to the pre-syncope........

I don't watch it as closely as I should, and I will push to far, and my heart will flip out. I often walk around lightheaded, and I shouldn't.

Try adding more fluids and salt. Still call the doc though----it's better to be safe...

Maxine :0)

Thank you blhorn.

I've been putting antibiotic ointment on it, and the wound itself is almost gone. I think my constant cleaning with antibacterial soap, peroxide, and the antibiotic ointment has helped a lot. However, my whole hand is so dry from the alcohol. time for lots of hand lotion.........

I'll call the doctor on Tuesday to see if he thinks he thinks I still need an oral antibiotic. Hopefully not, as those make me sick also. However, I'll take them if he feels they're necessary. I have not had a fever----average temp has been 97.7.

I just feel really overwhelmed lately from my health issues, and I think it's taking a toll on me. I need to get serious about resting better.

I didn't realize how serious cat bites can be. I was fine other then the pain when it happened on Wednesday afternoon, but on Thursday morning it felt bruised and sore still. There was a small area of swelling that got warm around the area which concerned me. It was like this Thursday, but got better little by little each day. Now I just need lots of rest, but can't right now with my two year old little granddaughter over. My husband is helping a lot, but I can't nap until she does. She's so smart--and so adorable. This morning my son dropped her off before he went to work. She came into the bedroom with my husband, and she walked up to the bed and handed me the bottled water, and said, "here's your water sweetie".

Here's my two granddaughter Mackenzie and Kaela together. Here she is trying on her mom's glasses. Here's the little 17 yearl old cat Samantha----the little biter..... (only once though)

Thanks again everyone!

Thank you for your advice and support. I feel bad not thanking you earlier. I'm not myself, and feel very depressed lately.

there's no more redness around the wound other then the small puncture itself, and it's not deep. It had a little bump under it that has gotten a lot smaller.

It doesn't feel warm around the area any longer. The bite was really painful----- the worst I have had. She has given me love bites that have been a little strong---but she was very upset after having blood drawn, so this time she clamped on. It wasn't deep, but as I said I think she got a tendon ir bruised it underneath.

It's turns out she has hyper thyroid, and it didn't matter how much food she ate, she wasn't maintaining her weight. She's 17 years old, still jumping much higher then my other 5 year old male cat Spencer. She ate normally, and even played. It was strange that she was doing fine other then losing weight. I took her in the vet, and they said she seemed fine other then the weight loss. They did some blood work, and found she is in the very beginning of kidney disease, which wasn't a big problem----but the hyper thyroid explains the weight loss.

She will be on a prescription to slowly shut her thyroid down, and she was put on a high fat, low protein diet to avoid further kidney problems. She said her kidneys are tiny. The problem is that shutting down the thyroid could affect the kidneys more, so hopefully the new diet will help avoid that. She said the hypert active thyroid was masking the kidney problems.

My old girl Samantha seems happier now, and back to her sweet cuddily self. She rests her little head on my hand when I'm on the computer. She is the sweetest cat, and never given us any problems other then the occasional chase around the yard----lol. She'll still run out the door and run about 12 feet into the yard, or run around the back porch. I can't believe how high she still jumps.

I'm still watching the bite carefully, and praying for continued healing. I don't mean to sound paranoid, but I'm not up to handling an infection, and tetanus scares the you know what out of me.

I keep putting antibiotic ointment on it, and continue to clean it often while adding peroxide and alcohol before I apply the ointment.

Maxine :0)

Mvdula, I have episodes much like you describe, and I've always chalked it up to my ANS issues, and upper spine/brainstem compression.

However, recently I had my blood catecholamines checked because I've wondered if it could be something else.

They were checked, and the Epinephrine came out to <10, norepinephrine was 277, and the dopamine was <30. My PCP thought it was awfully low, and in fact my colonoscopy was cancelled because he was concerned I wasn't stable enough. He had checked my BP while I was there, and it was only 80/50. He said I needed to go to my endocrinologist. I went to him, and he told me that at any given time people with normal health will get the same readings.

I wasn't quite sure what to make of it. He kind of made it look like it was an over reaction on my PCPs part. My PCP has seen me a lot more often, and has followed my health pattern----he was concerned.

I just had an episode of weakness and felt very jittery on Thursday evening. I got on the floor and crawled into a ball. It seemed to help, so possibly a blood volume issue. I had been standing up preparing a big salad for my sister in law and her family who had come over that night. MY sister in law was so nice to landscape a new garden for me, and I wanted to give them a good dinner. My husband cooked chicken and hot dogs on the grill, and I also made baked potatos. I wanted to make it as easy as possible, but I still got wiped out. Sometimes when I wash my hair in the morning, and I raise my arms over my head I get an intense weakness in them, and I'm surprised my hands still work! For me it feels like a switch just turns off.

I can't tolerate statins at all. I do take a moderate dose of beta blockers, or my heart rate will jump into the 150s. Klonopin does help when I get this way, but most of the time I just try to take in more water and salt. There's times it feels like more of a neurological issue. It's so hard to tell when I have so many other issues going on----------which one is causing it, or is it something else altogether?

Confusing--AND depressing.

I can really "get it", and I'm sorry you're going through this also. This isn't fiar-------it steals things away from you! I hope this is just a set back for you, and your body snaps out of it. Maybe it's hormones messing with your body, and it's temporary....let's hope!

HUGS,

Maxine :0)

As I said puncture wound isn't deep.........barely broke the skin. I think she got a tendon. It seems less red and swollen. It's looks like the infection is thinning out possibly----I hope and pray. It seems to hurt less also. Thanks for your replies and HELP----I appreciate it!

Trying to relax now-------------depressed, and tired of all my drama...........really, really, tired of it.......

Maxine :0)

Doc isn't in today........ I do NOT want to go to an ER......I panic just thinking about it. The bite is near the wrist, and the area is warm----about the size of a quarte and a little swollen. I think she got a tenton. It's not a full thinkness wound......barely punctured. I don't understand why it got like this-----it's very rough. i'm having a horrible time with other issues----spine, ANS issues ect. I can't face going to an ER----I'll lose it.

You have to understand the ERs here........they treat woman like you know what........ Hopefully I can hang in there until tomorrow, and doc can call in an antibiotic if things haven't gotten better.

I have a house full----my sister in law is doing some landscaping, and I don't know what to do. My son is having us babysit the little ones too---age 2 and 6. I feel shaky as you know what. Just took a half of klonopin. I feel pretty horrible, and belly is way bloated...........

Maxine :0)

Hi,

Yesterday I took my 17 year old cat to the vet, as she was getting too thing, but eating a normal amount of food if not more. She was laying next to me, and my nephew went to pet her, and she almost bt him. I went to comfort her because I knew they drew some blood, and I could see she was not herself. She wrapped herself around my arm and latched on with her teeth. She left one fairly deep puncture wound. I washed it right away with soap and water, and pit peroxide on it. This morning it was red around the puncture, and my arm seems discolered slightly----a little splotchy, but not swollen.

I had my last tetanus in 1997. I don't want to get another fearing a reaction to it with all my other existing problems, and sesitivities. The redness seems t be fading some. I have also put on antibiotic ointment and alcohol. the one on the other side of my arm isn't deep, and looks fine.

Any sugestions? It feels like a bruise underneath, but as I said the redness seems to be fading.

Maxine :0)

I'll be saying a little prayer for you when you're up there speaking Sara. POTS it rough, and certainly adds lots more disabling symptoms. You're doing a great thing helping those kids. Just do what you can-----I'm glad your friend Matt is helping you.

Sugartwin, Sara, and Babatte -----let's all keep in touch. I know you're on facebook Sugartwin------- I think you have my ph# already. I'll give my phone numer to the rest of you, and we'll meet somewhere in the Hotel.

I'm praying to stay somewhat stable so I don't have any problems with traveling ect.

Maxine :0)

I'll be sying a little prayer for you when you're up there speaking Sara. POTS it rough, and certainly adds lots more disabling symptoms.

Sugartwin, Sara, and Babatte -----let's all keep in touch. I know you're on facebook Sugartwin------- I think you have my ph# already. I'll give my phone numer to the rest of you, and we'll meet somewhere in the Hotel.

I'm praying to stay somewhat stable so I don't have any problems with traveling ect.

Maxine :0)

I'll be looking forward to meeting you too Babette & Sarah!

Issie------I'll be seeing Dr. Henderson, and I've read his Bio, and it looks pretty impressive.

I've also seen Dr. McDonnell when I atttended the EDS study in 2008. I'll be going two more times in the future.

Dr. Tinkle is my EDS geneticist, and I see him for regular check ups. All of these doctors will be speaking at the conference also.

Sara, that's great that you're working with teens, and that you're running the kids/teen program-----I know this must take a lot of energy, and I know it's limited with us. That is so great to see people like you who give so much of themselves. I wish I could help at the conference, but I'm going through such a rough time right now, that I barely have energy to run small errands. I used to co-lead a support group for dysautonomia several years ago, and took flyers for years to Dr. Grubb's office with this website on the flyers.

I live about a half mile from his office. I've met many dysautonomia patients since late 2001, and have sat with many of them before their appointments, or often met with them after. Some have even stayed at my house.....I used to enjoy making them a good breakfast or meal depending when they were at my house. I remember one couple that drove all the way from Washington state. I met people from Canada, NY, SC, Washington state, MI., Iowa, Southern Ohio, Cleveland Oh., Penn., and I'm sure a few other states I forgot. I know Dizzygirl enjoys my brownies----lol. I remember a whole family from southern Ohio came over-------they were such a nice family!

It has been quite a journey, and there were good times also!

Maxine :0) I'll be looking for your PM Babette.

We're looking forward to it, and hoping for tolerable weather. We would like to see the aquarium, and possibly DC. We are leaving on the 13th, and I have an appointment with a neurosurgeon who will be speaking at the conference on the 14th. We are staying at the hotel where the conference is held.

http://www.marriott.com/hotels/travel/bwis...mp;app=resvlink

EDNF members are getting a great room rate, as I know this hotel is very expensive. We will be staying at the hotel for 5 nights. The doctor I'll be seeing is in Bethesda, MD. Hopefully we can find a decent route that won't be too much of a white knuckle drive. For me it's really hard because my spine is so unstable.

Let's all pray we're feeling decent enough to enjoy this conference.

Maxine :0)

(((((HUGS)))))) sugartwin.

That happened to my friend from NY who comes to Toledo to See Dr. Grubb. She went to an ER in a smaller town in NY, and she was having atrial fibrillation. They told her they didn't want to see her in the ER again, and they discharged her without the option of being commited for mental illness. She would have let them commit her because she was afraid for her life-----it would have been better then nothing. They DID call a cab for her. She was so sick that her weight went down to 95 pounds at 5ft. 7in. She ended up letting them commit her to the psyc floor at one point because she was afraid she was going to die. She was an engineer with a great career, and she was reduced to this!

Sometimes I think the word "angry" is an understatement. There's times I feel absolute rage.

How do we get this kind of abuse to stop? How do they get away with it? It still continues!

Maxine :0)

Issie, you sound like a pleasure to be around. I separate myself from the negative things, and live another life with wonderful grandchildren, family, friends ect. They have no idea of the things I deal with in my other life with EDS, POTs, spine instability, and vascular complications.

There's good docs out there. They need to let us know they don't have the time, but would love to help us with what they DO know. They can tell me their limits anytime. I understand a lot of it----especially when I know a doctor personally, and I see the other side. There is no excuse for a doctor to give "below the standard of care" which is what many of us get.

I've heard about people getting thrown out of ER rooms------ literally. "Get out, and wait for your cab lady!" This is what the ER personnel did. She cried when she called me 9 years ago looking for someone to believe her. Thankfully, she is doing better now. What happens to people like this who live alone, and have no one to advocate for them?? We had a local support group, and had people like this coming to our meetings. I've heard too many tragic stories of abuse and neglect from the medical community, and I know some docs mean well. I can tell the difference.

I had an older doc that simply didn't agree I had a problem with cervical cranial instability, and I know I do! However, this doctor was respectful, and he had a healthy debate with me. He never suggested I needed psychological help, he just didn't have the experience with EDS, and the secondary problems that can heppen with it. He has since passed away, but to this day I still feel respect for this doctor because he had respect for me, and he had the decency to to admit he didn't know enough about the EDS and the relation to spine instability. At this time the EDS was diagnosed by a spine surgeon I saw in 2004, but the EDS diagnosis wasn't official until 2006 when I saw a geneticist. It's was still new to me, but I knew enough to know it was affecting my spine.

I have to respectfully say the doctors my mother saw gravely neglected her when they missed her cancer over and over again despite many CT and MRI scans from 2003 until 2007. Something is horribly wrong when so many doctors are in the picture and all of them miss it----and we find out 48 hours before she dies that she has terminal cancer. They put her in physical therapy the last week of her LIFE! Now I witness my mother in law who fractured her transverse sacram going through unthinkable neglect. You don't want to know what she went though-----but I can tell you I sat at the hospital every day babysitting the DOCTORS and NURSES. I have to say most of the nurses were great. The main OBTUSE nimrod was the surgeon.........let's just say it was a circus. I can't really take it further then this.... Just trust me when I say the medical profession needs some changes......

It's not just us they don't treat well, it's a lot of people. When my Aunt in Calf. had a brain tumor, they kept telling her she was anxious. She finally collapsed on her living room floor and the surgeon told her if it would have been 24 hours later she would be dead. This sounds dramatic, and I wish these things didn't really happen, but this is only part of what I have witnessed.

VASCULAR COLLAPSE is something that is serious, and needs to be looked at much more seriously then it is. EDS causes life threatening problems.

Check out this Pub med abstract;

Disabil Rehabil. 2010;32(1):1-7.

Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome.

Berglund B, Anne-Cathrine M, Randers I.

Nursing Division, Department of Medical and Surgical Gastroenterology, Karolinska University Hospital, SE-141 86 Stockholm, Sweden. britta.berglund@karolinska.se

Abstract

AIM: The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care. PURPOSE: To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences. METHOD: A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective. RESULTS: After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'. CONCLUSIONS: The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.

PMID: 19925271 [PubMed - indexed for MEDLINE]

I have a positive attitude, but I'm not going to stand by and let doctors continue to neglect me, or anyone else I know. Believe me, like I said---I know a doctor, and the experiences I have shared with he and his wife have left them speechless.

Keep your head held high------but wear a helmet!

Maxine :0)

I believe in a positive attitude also...........................

Sometimes we have to state the HARD CORE facts to these doctors so they understand the seriousness of this, which means we have to discuss the possible demise of people with ANS dysfunction associated with vascular complications, EDS, and autnomic neuropathy if they aren't taken seriously. This can appear as someone not having a positive outlook, but if docs would just listen then we can have hope. This hope can be a good jump start to a positive attitude.

It's very tragic that some people die because doctors fail to listen to their patients. There's some things that are so obvious, but patients still go untreated for serious medical conditions. Also, important details of their MEDICAL condition are often NOT documented in thier records. Half the time doctors don't even read all of the medical records. I know this because doctors at the Cleveland Clinic didin't read my records, and NOW I find that this whole time that the missing vertebral artery in my brain could have something to do with my cervical cranial instability. I suspected it could, and I asked them about it, but they completely dismissed it. It's documented from NIH----how can they ignore records from NIH?!

Now I find that since an ultrsound of my carotid, vertebral, and subclavian arteries that there's blood flow in the left vertebral artery, but apparently it's stops at the cervical/cranial junction. WHAT DOES THIS MEAN? It's pretty obvious even to a layperson that if blood flow shows in the cervical region, but MRAs of the brain show the left vertebral artery missing completely, and the person has a history of almost 8.0mm of cervical cranial instability at the c1-c2 joint WHICH THE VERTEBRAL ARTERY WEAVES IN AND OUT OF, then it's obvious the blood flow must be cut off somewhere in this region. YA THINK?

This is veering a little off the main subject, but the point is that there's dangerous things associated with EDS and POTS-----one of them being skeletal problems affecting soft tissue and the vascular anatomy. The EDS also causes poor vascular tone which causes severe blood pooling.

I find it maddening that one of the doctors I saw at the Cleveland Clinic has ordered a CT of my neck, and one of the diagnosis codes is a vertebral artery dissection. We put the CT on hold becuase I've had so many CTs in the last months. We were going to try another MRA, but this time with different views.

http://emedicine.medscape.com/article/252062-diagnosis

There's also a type of MRI---CISS MRI;

http://journals.lww.com/spinejournal/Abstr...ertebral.7.aspx

Why do we have to research this stuff ourselves------------

Shouldn't the doctors we see know this? Do I have to wait until the overloaded right vertebral artery blows up? I have been told the right vertebral artery has been enlarged since 2002----before I had my cervical spine surgery. The docs have blown that off too.

Now I will be ssing another surgeon in Maryland who specializes in cervical cranial junction instability. I'll see him the day before the EDNF conference in Baltimore, as he will be speaking at the conference also. We wanted to schedule this near the conference to avoid driving there twice.

Maxine :0)

I can understand completely Sugartwin. Especially about have a life threatening experience, and no explanation behind it.

I'll never forget the time I was in the mall, and I thought I was doing OK. In fact I put a little skip in my walk since I had been feeling better then I had in months.

The next thing I know it felt like my heart stopped, I had grey tunnel vision, and then it felt like my heart Rebooted itself and started to beat really fast. I had other occasions this happened, but never that bad. It was pretty close-----close enough to discuss the implantable loop recorder with Dr. Grubb. Of course after he implanted it, this didn't happen once. Each time it did happen was when I was walking.

It's very disturbing to have something take you down like that, and never know what really happened. It's always on the back of my mind. I don't know if it was actually life threatening for me, but it sure seemed like it. The other times it happend I would squat down, and it went away faster.

I'm told tilt table testing should not be done on patients with EDS.

Maxine :0)

I have the EDS, but never been checked for hypovolemia. Overall, ANS testing has been scant.

But I know it should be check, but too overwhelmed with skeletal problems, and other CNS issues that I haven't broached the subject with my ANS doc. I don't even want to set up my next appt.

My catecholamines came out so low, but endo doc said everyone is like that at some point during the day.....hmmm. I don't know about that. I feel like I need to be scraped off the side walk after two minutes in the summer heat----much worse with the sun. My hands swell immediately, and go back to normal as soon as I hit the air conditioning.

I feel like I'm walking around in shock a lot, and it doesn't have to be hot out. I just run an errand and I'm wiped out.

I'm going to the EDNF conference in mid July, and it will be interesting to get some insight from all the different doctors who will be speaking------some will even have a short 10 minute consult with us. That's more then some of us get when we pay $$$$$ for an appt.

Maxine :0)

The Wellbutrin worked fine for me, but it did make me GAIN weight. Dr. Grubb said people lose weight-----which they can do. However the drog can work both ways. It helped with the panic feeling. Dr. Grubb told me it makes my body less sensitive to my won adrenaline. I do have POTs secondary to the EDS, but I got the same kind of panic/tachycardia attacks for years----way before the POTS and EDs diagnosis. Beta blockers worked for 10 years, but after POTs crash, the wellbutrin helped me regain function, and I had less issues with the panic type feelings. It also helps constrict my blood vessels which helps with blood pooling.

I would start out with a very small dose. I only take 100mg SR once daily. Not taking it causes me to have virtually no function, but when we tried to increase the dose it left me feeling too weird, and feeling overly sedated.

Now my dopamine levels are really low, and I'm not sure what to do. I went to my endocrinologist which was a total waste of time.

Maxine :0)

I'm thinking the "panic" is actually part of the POTS-----or IS POTS............

That's one of the first symptoms I expereinced when I was younger.

When I get those attacks on occasion I feel helpless, and to me this is thw WORST part of POTS.

It's also the one symptom that if often misinterpreted as "anxiety", or having a "psychological" disorder.

I used to take xanax in the early 90s. I think I took it for about a year. Back then I just had the tachycardia whihc was mostly controlled with the beta blockers, and the xanax helped with the panic attacks. In fact I was able to lower the beta blocker dose when taking the xanax.

Now I take Klonopin which does the same.

I take a small dose of klonopin-----.50----usually only half though. I keep the other half on reserve for those occasions when my body is stressed more.

Don't feel guilty about the xanax. You need this to help with your POTS, just like someon needs insulin for diabetes. My PCP said not to worry about it. I don't take it to get high, I take it to be able to function in normal life.

That's an interesting article.

Maxine :0)

Sorry Lieze,

I remember times in the ER with the tachycardia, and being scared--------then of course they say there's nothing they can do to help------ALWAYS.

I'm glad you had an understanding nurse at least, and she has a good understanding of POTS.

That's what I need if I ever go into the hospital----a telemetry that doesn't let ME see my pulse and BP. I get more anxious if my HR is too high. At home if I take my BP/PULSE, I won't take it again if my pulse is high-----not until I calm myself.

Take care of yourslef, and DO keep us posted.

HUGS,

Julie :0)

What I especially like is that fun questionnaire they have you fill in at every appointment-------------it's on a little computer note pad thing---( I'm not sure what to call it). It clearly looks like they are trying to get a psycologica assessment.

The Cleveland Clinic is definately not up to par on dysautonomia, but does have a doctor there who is familiar with it. They are in the dark ages when it comes to EDS, and the spine instability related to it. They gave one of our fellow potsplace members who is diagnosed with POTs and EDS a psyc diagnosis. This very intelligent young woman clearly has all of her faculties, and I'm sure she has the ability to relate to these doctors. I do question if some of those doctors have a sound mind themselves, because when I talked with this young woman I couldn't figure out how those docs would come up with such an obtuse diagnosis. It's clear that her PHYSICAL symptoms are related to POTS and EDS.

The Cleveland Clinic has areas of interest, and they are one of the top teaching hospitals in these areas------------BUT, I assumed wrongly that this was the place to for help with my spine instability related to the EDS. They have very little knowledge on connective tissue disorders, and the many complications that are related to it.

Maxine :0)

Odd enough------The omega 3 codliver oil with vitamin D is the one I tolerated the best believe it or not. However, after taking it a while my blood thinned too much, and I pooled worse ending up with more uncomfortable heart palpitations. It looks like the one time I took that liquid formula of vitamin D in costco I seemed to turn my blood to water instantly. I reacted very badly to that. My levels have been around 6-7 on average since 2005----probably longer. There was the one time I read a level of 3----this was from the blood work at the NIH EDs study----I THINK-----don't quote me on that.

I heard this can add to my pain. My pain levels have actually been higher lately, and my vitamin D levels went up to 12. I know this is still bad----I'll see the endocrinologist on Friday. Hopefully he can tell me why I feel like I need to be scraped up by a spatula off the ground lately.

Maxine :0)

I have adverse reactions to it, and of course not one doc I have seen so far has heard of this either. My levels have been as low as 3-------but now they are up to 12. this is still extremely low, but The last time I took a liquid dose of it I got dizzy, faint, and my heart starting having palpitations, and then started pounding. When this happened we were at costco, and we had to leave. I was in such a panic, then it stopped-------I wanted to go back to costco.

I have tried prescription vitamin D several times, and the reactions before this have been a chronic fatigue----flu like symptoms. I know I need it badly, and I don't know what i'm going to do. I'm in the process of trying to contact my endocrinologist now. I have had bllod work done, and my catecholamines are really low too, but normal can start at -0- from what I'm told. I have no idea what normal limits are put I posted the results on an earlier post.

I don't feel good at all lately, and had a horrible night of pain Monday night. I went to the dentist thinking it was my upper left molar, but he did an x-ray and roots look fine, but he did notice some bone wasting in the pocket between the back and mid molar. The mid molar is crowned. It hurt all the way into my neck, jaw, head and shoulder. I told the dentist about my neck instability, and he said the pain can spread to my jaw & teeth from my neck. My neck is really bad, and I'm assuming being so low in vitamin D can't help. However, when I had my bone density test done at the EDS study at NIH it was in the normal range except for a little osteopenia in my hips---(surprise, surprise)-----basically still normal.......

Thankfully my bone density is OK considering my connective tissue is making me fall apart.

Maxine :0)