Appoint with Dr. Grubb Sept. 22nd

[Guest Julia59]

I have an appointment with Dr. Grubb on Sept 22nd. I know in the past he told me he didn't think I had EDS based on my looks and body weight ----about 10 pounds over my ideal weight. Not fat----but heavier then I want to be . I think he also based it on family history, and a difficult chilbirth I had with my son.

I was later told by a chiropractor that my x-ray showed a problem with my birth canal being too narrow, and that my son should have probably been born through a c-section. Good thing he was not in any distress-----but I sure was, so they pulled him out with forcepts and snaped my pelvis/tailbone out of place.

Long story short........How do I approach this subject again with Dr. Grubb. He's a great doctor and I just love the respect he shows his patients, but I think this subject needs to be addressed more with further testing. He has so much experience with ANS dysfunction and I really admire his strength in the long long hours he puts in every day to help all of us. He will give us time he doesn't have to answer the many questions we have because of this disease/disorder.

I still have on going problems with all my joints, especially my shoulders and hips. Now my left elbo is slipping. None of my joints have completely dislocated, but most of them slip----even my jaw. Really------I can't do any physical activity without further aggrivating the situation. And the pain is another uncomfortable factor, not to mention what this is doing by throwing a monkey wrench into my on going cervical instability issues. I guess this isn't a long story short---is it?

Sorry to go on, but I guess i'm a little mixed up about the whole thing. I just have never had much testing since this whole POTS thing began. Just a lot of MRI's for my neck/brain-----and some electrical testing. In other words no ANS testing or EDS testing. Just blood work looking for other causes---like lupus, lymphoma, cancer----and so on--------the buck stopped right after the POTS diagnosis---other then the testing for my chiari/cervical stenosis/instability. Couldn't EDS complicate the cervical/cranial instability more? I hope and pray I don't have this problem---because i'm guessing it would make a further mess.

Maybe i'll just not bring the subject up at all and go get tested somewhere else for it. Any thoughts on where to go? Dorothy told me of a place up in Michigan, maybe i'll call her.

Julie :0)

[KarenLorrel]

Hi Julie,

I think Dr. Grubb will listen and look at your symptoms again especially if he know it would give you a peace of mind.

Did he do the Breighton Scale test with you last time? That is the one where he bends your figures back...wrist...arm flexibility...etc.

While you are sitting on the exam table did he look at your legs?...often mottled in appearance as blood pools.

o you experience tachycardia when you stand up?

He does a clinical diagnosis...I didn't ask for the test to verify that my DNA is different.

Do you want the DNA testing to either confirm or rule out? I bet he will do it...especially if you tell him it would give you peace of mind.

I hope your appt goes well...you are so right...he is a great doctor!

Lorrell

[Guest Julia59]

I want the DNA testing to rule it out. EDS is the last thing I want to add to my list of problems. I'm on the fence about it as I don't fit some of the criteria. The main thing that fits is the extensive flexability which might be nothing more then that. But the joints slipping is another story. When I get up in the morning I feel my clavical and shoulders slip when I go to get up. This has increased considerably over the last year.

I just want to know where the heck all this is coming from. Now when I walk my hips clicks in and out. This is more then what I want to deal with---Seriously.

Julie :0)

[Guest Julia59]

I was thinking that maybe i'm so out of shape with my muscles that I lost some of the support towards my joints. Maybe i'm just flexable---and out of shape. Especially my upper body because of the weakness caused by all the cervical spine problems.

My tests from New York pointed out some problems in my thoracic C7/T1 and lumbar areas of my back----but more in the lumbar L5/S1 area. I don't really notice anything other then the problems in my upper back and neck. I want to get in better physical condtiion---but how can I strengthen my upper parts?

My muscle tone just might be shot-----how embarrassing......

Julie :0)

[Ernie]

Hi Julia,

I would tell my concerns to Dr Grubb and ask him directly if he could order the DNA test for EDS and if he does not want to I would look for another doctor who would order the test.

Ernie

[DancingLight]

hey julie!

i have not been good at keeping up with posts lately! oops!

but i wanted to respond to your dr. grubb/eds post...

as you know, i ended up going to hopkins to see a geneticist...and he did not agree with dr. grubb's diagnosis of eds for me...

however, in your case you sound like you fit a lot of the criteria!

i don't know what to say about the appt. with dr. grubb...

it depends how many other ANS questions you have for him...

really, he is not and expert in eds, he is an expert in the dysautonomia and he doesn't really do the complete exam for eds.

it sounds to me like you really want to get the thorough, completel profile to screen for eds, not just type III but the other types too. am i reading your posts correctly on that?

i felt so much better having gone to someone who really just focused on the eds aspect and getting a second opinion.

this is NOT slander towards dr. grubb. there is no way he can be an expert in everything!!! this stuff is too darn complicated.

the eds exam took a long time at hopkins. and i just don't know if dr. grubb has the time or expertise to go into the detail you would like. especially if you want the genetic testing. remember, there is NO genetic test yet available for eds III, only for the vascular and a coupel of other types. eds III is diagnosed cmpletely on physical exam and family history.

also, another thing to weigh is that i don' tknow how much whether you have eds or not would affect dr. grubb's treatment approach for you.

does this make any sense. i feel like i am in a grumpy mood right now, and although i am trying to write things out nicely, i wonder if i am sounding snappy and not even meaning to! hopefully, you know that is not at all how i intend this!

that's just my rambling two cents for now...just whether or not it would really change anything from dr. grubb's perspective. also, since he hasn't been real open to it, maybe it is best to keep focused on ANS needs, and get the EDS stuff done somewhere else.

it's a tough call, esp when you want drs. to look at the whole picture. but it is also so complicated! maybe if you went next time armed with the actual diagnosis of eds (if in fact you do have it) then you could discuss how it might affect treatment at another visit?

just some thoughts.

take care!

i really am curious if you have eds, given your symptoms! either that or you are super hypermobile!

emily

p.s. did you buy your pill holders yet???? sorry, had to tease you.

[KarenLorrel]

Hi Julie,

I wanted to let you know I found a Physical Therapist in Blissfield which is 15 to 20 minutes from Toledo. I gave him Dr. Grubb's book, took in research and we talked about EDS...and POTS. I also talked with him about the exercise intolerance, my inability to breather deeply. He did a thorough exam...talked much differently than most PT's which in fact have worsen my condtion. Right away he recognized why I PHYSIcALLY cannot take in a deep breathe. He explained why and said he could fix it so I could breathe deeply. I am a very swallow breather.

He was very interested in learning more and adapting a PT program to help stabilize my joints...build the core muscles and open up my chest. He might be someone you want to check out. I know you have lots of neck problems so you might be able to go to a PT...but thought I would mention him because he is close to you.

If you are interested I will give you his name and number.

Just a thought...Karen 'lorrell'

[Guest Julia59]

Thank's for the replies everyone! Emily---can you believe it---I still did not get the pill holder. I will------I promise----------

Lorrell, I will give it some thought regarding the PT. I'll see Dr. Grubb in just a couple of weeks. I plan on telling him that Dr. Bolognese did say I have EDS---but I should see a rhumatologist or another expert on the subject.

I sure am hypermobile, but i'm just not sure. I'm telling you---I can not understand why most of my joints are so loose. It's not just the hypermoblie---it's the slipping of the joints. It's even difficult for me to sit up at time's, and lately it's getting worse.

Today, I drove to the Mall to pay a bill from Marshall Fields that falls at an odd time of the month. Always due on the 6th---and if we mail it , it will be late---then $25.00 late fee. Anyway, just walking from the car to the store----and the store to the car I got real flushed, out of breath---just felt like collapsing. It's got to be the heat------but how did I manage at the John Kerry event for 5 hours. I know I had Ice/shade ect.-----but it was Hot.............

Maybe I over did it then---and now the heat is affecting me quicker. I'm telling you there is no rhyme of reason to this crappy disease. Then I went to Sherwin Williams to look at borders for our bedroom. Fortunately I parked right in front. Still, I was slurring my speech and had a difficult time picking up the wallpaper books. The good news is that I found a good pattern that will fit nicely with the paint-------$1.99-------------normally $12.00---

My parents house is close, and I drove over there for a quick visit. My Dad could tell I was wiped out and carried my new bed comforter in the house so I could show my mom how it matched well with the border. I blasted the AC all the way home.

Sorry to be rambling about myself---as so many of you are much worse then I am. I'm just having some bad days------and the heat is bothering me today. Yesterday it was not bad-----but today-------so quickly it bothered me.

The joints are so unstable feeling...... I wonder if i'm blowing this out of proportion. It just doesn't seem real..Maybe i'm just really out of shape---and a physical therapist could help strengthen the area's near my joints. This will have to be done with no strain to my neck. I will talk to Dr. Grubb about it Lorrell------but i'mm not sure he will know enough about it. I'm not going to stop with Dr. Grubb-----I will look into seeing someone else.

Thanks again,

Julie :0)