Mulling something over my doctor said today

[MightyMouse]

This evening I saw my local ep cardiologist. I'm planning on trying to stick with him for my POTS/NCS related care as I need someone closer than Dr. Grubb.

Today we re-reviewed my history, and I updated him regarding my EDS diagnosis. I will also share with you all that I believe my mother has EDS as does one of my sisters. Anyway, he believes that EDS not a sufficient explanation for my POTS/NCS. It was near the end of my appointment so there was no time to discuss further.

Now I need to re-read all my eds & dysautonomia articles to be more able to have a discussion next time I see him. I have a few months to ponder. Any thoughts from you all??

Nina

[joyrose]

Dear Nina,

Wow! He switched road signs on you. You're still going the same direction, in the same body but now you have a million more questions.

Have you had genetic confirmation of EDS? Even though you fit every one of the symptoms, what if? What if you didn't have it? Or, you're at square one ("oh no!") and have to once again go over your history like you were going on display in the Smithsonian.

You have read and studied so much that if there is a link eventually it's going to dawn on you and you are going to see patterns...

I know that you are doing your best. -Deb

[Ernie]

Hi Nina,

I would do the genetic testing to rule out EDS.

Ernie

[michiganjan]

To Nina.

I, too want to have a good POTS doc nearby without having to rely on Dr. Grubb. I see an EP cardiologist locally every nine months. He has at least some understanding of POTS. However the last two times I saw him, I brought up the EDS connection. His reaction the first time was to look at me and say I didn't have it and his reaction the second time I brought it up was to say, "You don't need any more diagnoses." My conclusion is that he either is uneducated about the connection or he scoffs at it. Otherwise I like this doc--at least he views POTS as a real problem. You and I should make an effort to educate our local POTS docs. Can you find any printable research on the connection? If you can find a good article I will take it to him next time.

To Ernie,

You can't completely rule out EDS by testing. There is a test for the vascular type of EDS. The test is a skin biopsy. I had that test and was negative and that presumably rules out vascular type for me. The other types of EDS are diagnosed based on physical examimation, history of joint looseness and dislocations, and family history of hypermobility. Based on these, one can be assessed as being hypermobile or as having the skin type consistent with classical EDS. (I believe Michelle's diagnosis of classical type was based on examination and her skin type.)

Michigan Jan

[MightyMouse]

Jan is correct. While EDS III is the most prevalent, it's the least understood. There is no genetic test for type III.

My doctor was kind of questioning whether or not I had it, but whether I do or don't, he didn't feel that EDS would play much of a role in my hypotensive episodes.

Perhaps it just is that I need to educate him on the topic. We'll see. I'm going to continue with him, because other than his view on EDS, he's knowledgeable about the medications. When I first saw him in 2001, he wasn't knowledgeable about it at all. Maybe the EDS issue will come along too A girl can hope.

Nina

[sally]

Just to give some insight as well on this subject.

Per Johns Hopkins docs EDS does play a role in orthostatic problems due to laxity of the blood vessels from EDS causing blood pooliing in lower extremities that also causes circulation problems with blue cold toes or fingers etc. Also Per Dr. Rowe published articles as I'm sure you've probably aready seen. It's dual diagnosis given per Johns Hopkins when orthostatic problems are occuring with Ehlers Danlos patients. Although it's not so leave out that you could have this problem by itself without EDS as well.

good luck

[tracy]

This is all new (as a dignosis) to me. I have lived all my life with this, but just recently put a name to it. I may have missed it, but what is EDS? Sorry, just wondering.

[MightyMouse]

No problem Tracy, EDS stands for Ehlers Danlos, which is a collagen defect. If you look at the "help yourself" pinned topic at the top of the forum, there are links to resource files there.

[catmcgrath]

Hi

I have EDS type III and POTS. In fact it was during a consulatation with Prof Grahame (rheumatolgist with special interest in hypermobility here in london) that my POTS was diagnosed. He told me that he always checked his EDS patients for ADS problems and then refers to Prof Mathias for further tests. Both Prof Grahame and Prof Mathias believe that there is some link between the two conditions and having a combination of the two may be a new condition in its own right. I know they are researching this link together and will attempt to find out more when I go in for my week of tests in a few weeks. I do not think they have had anything published yet.

[briarrose]

MightyMouse

Do you think that he said that because he has formulated some other thought about the origin of your POTS? Or maybe he just doesn't realize the impact that EDS has on POTS?

hmmm it's a tough one.

[MightyMouse]

He's never had an EDS patient before, so he's not an expert on the topic. Nina

[MightyMouse]

Does anyone have any articles relating EDS to POTS or other ANS dysfunction that aren't listed as references on PotsPlace? I'm thinking my best strategy is to better educate myself and then share the written info with my doctor.

If you have just an abstract with names of authors, title or journal/year, I can probably find a full text version via my library priviliges at grad school.

Nina

[MightyMouse]

Steph, thanks for doing that. Some doctors believe generalized joint hypermobility and EDS may be related.

Nina

[MightyMouse]

Holy smokes... Steph...

Googly Mc Googlesteph

you're a googling freak! But I like it Thanks for your help. I see I'll be doing quite a bit of reading!!!

[Michelle Sawicki]

Hey Nina,

Check out the "causes" page under Ehlers-Danlos syndrome:

http://www.dinet.org/what_causes_pots.htm

Down at the bottom in the references section you will find references to articles that have been published on the EDS/OI connection.

And Jan, yes I was diagnosed with EDS classical type (EDS 1) by a geneticist based on my stretchy skin, scars and hypermobility.

Michelle

[Guest Julia59]

Thanks Steph for the loads of information. I skimmed some of it and found it very very interesting.

I'm still trying to understand what my body is doing to me lately---it's no walk in the park. Yesterday I went with my folks to help them pick out some furniture for their family room. This was only a two hour trip. I was so miserable I had to go straight home. They wanted my to go out to an early dinner with them---but there was no way.

I don't know what came first in my case-----the POTS---EDS---or all the cervical spinal problems (stenosis) including the instability at the cervical cranial junction. Dr. Heffez said the EDS could further aggrivate this problem. I also have the small posterior fossa/ and the prominent vertebral artery---(the source of the brain stem pressure), and the instability is not good for that eaither. I'm at the point of which came first?????????? There are still a number of unanswered questions in my mind------------which is causing a LOT of anxiety----which in turn makes all my symptoms worse.

My symptoms have gotten increasingly worse lately----- and I feel like i'm at the end of my rope. I have also read where EDS affects the bowels. I have a copy of it, but it's too long to post. I will try to find the link.

I have to go to my appointment with BEV the nurse at Dr. Grubb's office to try and get some help controlling these recent----(JITTERS)---and to once in for all try to see if Dr. Grubb can find me a neurologist.

I will see what I can find out regarding more articles on EDS---but it looks like Steph found a lot already.

Julie :0)

[Guest Julia59]

Steph-----

Trampoline girl here-------NOT...............

The Cleveland clinic may very well be my next venture. I had a long discussion with Bev---Dr. Grubb's nurse practioner yesterday at my appointment with her.

First I will say she is truly a great asset to Dr. Grubb's team. Next I will say she did her very best to help me out with my recent POTSHOLE mess, and she is trying to help me find a good neurologist locally---or at least within a couple of hours away. The Cleveland Clinic is only 2 hours away from Toledo.

Bev wrote two prescription one for 50mg Wellbutrin boost, and the other for Cymbalta. We are going to try the extra dose of wellbutrin first to help with my fatigue and hyper adrengic surges, and if that doesn't work out well then I will wean off the wellbutrin and go on the cymbalta.

She will talk with Dr. Grubb about a neurologist, and also tell him about my recent POTS HOLE.

I have noticed my incision is giving my trouble again. I didn't post about it earlier---I think---I can't remember. I was having trouble with drainage, but then it seems to scab up and start healing. Now the scab fell off, and it seems the left side of the wound doesn't want to clse up, and now there is a perfectly round little hole that is oozing more then before. I don't understand why it won't close up for me.......

Oh well----i'm going for another wound check tomorrow morning.

Take Care.

Julie :0)

[joyrose]

Dear Nina,

You are so persistent.

You try so hard to find out the answers. You still keep dancing. -Deb

[MightyMouse]

You all have been so very helpful

Steph, I was too busy with school work to fully answer your other questions. As far as Dr. Heffez is concerned, I do not have a Chiari malformation. However, I had profound spinal stenosis stemming from a ruptured disc at c5/6 which happened when I was 10 years old. The cervical spinal bones fused together (isn't the body cool that it can protect itself like that??) and in the subsquent years (2 decades) that followed, the bony matter started filling in the spinal canal.

A normal spinal canal's diameter should be about 17 milimeters. Mine was 7 milimeters. I had surgery to free the two cervical bones from each other, then clean out some of the bony matter in the canal, and lastly, put in a donor bone graft to restore the spacing that would have been there had the disc not ruptured. That bone graft was implanted in February of '05 and collapsed in end of July '05. The first week of August I was having an emergency procedure, this time taking the graft from my iliac crest (hip) to improve the chances of fusion. The bone in the crest is some of the most densely infused with blood supply. Anyway, that bone did heal properly--and helped me be in less pain, improved my swallowing problems, and balance. Not a perfect solution as some nerves are permanently damaged--such as feeling in my left thumb which was the first to disappear at age 13. 20 years of compression on that nerve, and there's not really a shot of getting it back.

Mito disorders--well-- I've never really had a problem with muscle mass loss. Actually, I build muscle quite easily. I'm sore as anything after doing workouts, but I do get a payoff in tone, so that's one reason I'm able to stick with it. Ahhh... the reinforcing properties of vanity...

Off to go pack some bracelets. Nina

[DancingLight]

I've been itching to post on this thread...and finally have I think enough energy to post! Yippee! Okay, so here goes...

If I am repeating, all I can say is that I am blaming it on 1. Dopamax and 2. Ambien withdrawal/no sleep.

Okay, as for the causes of POTS and EDS and all that jazz...I see it that Nina, you have several factors contributing to your POTS...

My POTS doc gave me a diagram. Wish I could just post it. Bear with me here.

Picture a circle in the middle. This is OI. Then, around that are many smaller circles with an arrow pointing inward towards OI. Each of these are possible causes/contributers to OI. They are:

Depression

Anxiety

Food Allergies

Inhalent allergies

Asthma

Infection

Movement Restrictions

Chiari type I or c-spine stenosis

EDS

Pelvic Venous Incompetence

Chronic Fatigue Syndrome is a Big Circle also that has dual direction arrows b/w the OI and its circle.

Now, Nina, of course you don't need me to tell you that you fit into many of these categories! Asthma, allergies, stenosis, EDS!

Here's how he saw my case...in case this might help.

Originally Dr. Grubb diagnosed me with POTS and EDS III. I then followed up with a geneticist at a BIG l'hopital who said that I did NOT have EDS III. That being said, I do have some hypermobility of joints but nothing like what you and our dear Stephy have. I fit a couple of EDS markers, but not enough to qualify as an EDS III person.

When I then saw my POTS doc who is up on the papers connecting CFS and hypermobility, he shared this diagram with me that I am trying to describe!

Some people might be much more clear cut and fit into one of the categories very clearly...and they will be much easier to treat of course!

I, on the other hand, of course, fit in to several of the categories.

So, what we did was take the category that I fit MOST and started there to try to peel away the layers.

I am one of the MOST refractory patients (Dr. Grubb also told me this) and so I'm obviously going to be more extreme on some of these things. And, I have not responded to traditional meds such as Florinef, Midodrine, Epogen, etc. These were clues that there may be a biomechanical basis to my problems. These are movement restrictions and c-spine stenosis. No one else had ever picked up on this before, despite the fact that my mom's cervical stenosis runs down the entire side of my mom's family (grandmother, mom and her only brother all have it--and big time.

Based on my extreme reactions to the PT exam he did and my movement restrictions we are focusing on doing PT--basically neural tensions to reduce the tension on the spinal column. I may or may not have cervical stenosis, but I do have a LOT of neuropathic pain that could be caused by several things, but right now we are doing the PT. And trying to find meds to control the symptoms as much as possible so that I can toleartte the PT better (manual therapy).

I'll go through the list as it worked for me...

Depression and Anxiety...often factors in chronic illness. Anxiety more an issue for me, but under control with an SSRI. He did not feel this was an issue with my POTS.

Food allergies...I probably have a hypersensitivity to milk protein. This means NO MILK...not even in my meds. If they have milk in them, they need to be compounded or I can't take them. We have not been able to confirm celiac, but I am on a strict gluten-free diet. Rigth now, until we sort things out, also am egg and soy free.

Inhalent allergies...always a problem for me. Especially ragweed, but lots of other stuff too. Under some control with Allegra and Singulair and avoidance of triggers, using A/C, etc.

Asthma...nope.

Infection...a remote possibility. Possibly lyme disease, but hasn't been confirmed with tests. The only way to figure this out is to do a three month trial of anti-biotics on me.

Movement restrictions....a big one for me...For me, I can't lie down or sit or do anything without the pull on my neck causing heart pounding and POTS symptoms.

Chiari/stenosis....probably the other big one for me. Even if it is not stenosis per se it is some sort of restricted movement of the nerves in the spinal column and nerves that exit it. He looked at my MRI films and felt that my spinal column looked too narrow, but we have not done new MRIs...He is very conservative and I think he feels that unless PT doesn't work, it isn't worthwhile. We are doing PT and meds to try to avoid neurosurgery.

EDS...a few markers, but not enough to make a diagnosis.

Pelvic venous incompetence....probably not.

CFS...yup.

This got long. But, then again, it's complicated. This stuff is a lot to sort out. Also, many of you have asked me for more details about my situation...so here ya go! Watch what you wish for! As my mom would say!

Hope this helps! And of course, if you have any tips for me, I'm open!

Right now we are not making much progress b/c we are trying to fix the meds. The PT causes POTS symptoms for me, so we have to find meds to reduce those symptoms so that I can tolerate more PT. Then, as I mess with meds I feel like crappola and feel like I am going backwards. It is a slow, slow, process that my doctor reminds me takes much patience.

I, too, like Steph, am wondering one thing...stenosis would have been there for a long time probably. Especially if I actually have a spinal column that in and of itself is too narrow.

But, I too, got sudden onset of POTS. This is why we have explored Lyme disease some. Still, I wonder why the sudden onset.

Okay, time for yoga. The exercise thread is really kicking my butt in gear here.

Later alligators!

Emily

[Guest Julia59]

Emily---your post actually helped me a bit.

AS you know all too well----I also have the cerival spine stenosis. This has been confirmed even by the Docs who blew me off. Dr. Heffez and Dr. Bolognese were a lot more serious about it, but the other docs blew the stenosis off even though they admitted I have it.

Unfortunately I also have a small posterior fossa/chiari 0 and additional pressure from the prominant right vertabral artery---or is it left-------- , So basically I have stenosis from my c-spine all the way through my brain stem.

If in fact my EDS is the correct diagnosis----that would be a very bad mix----EDS and stenosis. Dr. Heffez said I had slippage on extension of my neck-----which could be related to the EDS. It's a bad mix because too much movement + stenosis could be dangerous for the already compressed spine. The instability from the EDS only magnifies the compression when my neck is moved in various positions.

Ugg----I can't imagine surgery with all of this going on. A laminectmoy is a BIG DEAL surgery-----In my current state of health---i'm wondering how well I would do under anesthesia------- There has been no surgery date set yet. I still have to find a good neurologist--------------------. Do you think if I send in enough box tops from captain crunch they will find me a good one this time?--------

Julie :0)