Current or former patients of Dr. Grubb?

[Jyoti]

If you have personal experience of Dr. Grubb I would be very interested in your advice.  

I put myself on his wait list a few years ago and ..... forgot about it.   In the meantime, I found a neurologist who specializes in dysautonomia within a two hour drive.  Earlier this week, I got a call from Dr. Grubb's office offering me an appointment in April.  (Toledo is REAL travel for me. )  I am trying to decide if following through on the opportunity to meet with Dr. Grubb makes sense and is worth the effort of getting to him.  I know he is widely loved and admired, but......

My neurologist has been thorough, spent lots of time with me, done and ordered a broad range of tests.  He has trialed me on Midodrine, Propranolol, Ivabradine, all to either ill or no effect.  I find that increased salt and fluids as well as compression garments change nothing in terms of my experience.  Currently, I am on Mestinon at a very small dose and it is revelatory.  I can exercise a bit with some enjoyment and my overall function has increased by at least 15%.  Which, as we know, is significant!

There are, however, some areas where I feel my neurologist has kind of 'lost interest' in me.  I am not tragically young, I don't have LC, I am not severe (though my former life has been well and truly wrecked by POTS, hEDS and ME/CFS) and I don't pose any fascinating challenges for him.  For instance--I have had some autoantibody tests that were clearly abnormal but he has brushed those off.  Same with SS-A and SS-B, although I have the symptoms.  I know that those blood tests are not particularly accurate and if there is a suspicion of Srogren's clinically it makes sense to do a biopsy.  Mostly--it seems like there are no huge red flags, so I am now considered a routine POTS patient who gets routine check-ins and nothing more.  My POTS has not changed at all, stand tests are no different to what they were when I first saw him, etc.

In addition, last year I had a dexamethasone epidural for SI joint pain and while it took two weeks to kick in, the pain subsided at about day 14 and stayed away till day 26.  Strangely, from days 14 to 26, I had complete remission of all POTS signs and symptoms.  As the pain returned, so did the increase in heart rate, pre-syncope, etc.  I saw him during this window and he dismissed any connection--no curiosity-- and suggested that, well, basically, I was pretty much cured and we could titrate off all meds and send me on my way if it held.  

I like this neurologist and am grateful for his attention and experience.  He has taken me seriously, he has been willing to try most of the POTS-related meds and he is both knowledgable and kind.  He does not recognize ME/CFS, though, and routinely tells me I need to walk more than 60 minutes every day and really 'huff and puff.'  I just ignore what is contraindicated by my other conditions and take what I can from him.  I feel like the returns are diminishing. 

So here is my question: what in your experience does Dr. Grubb offer that would be different?  That might or might not make it worth my while to travel to Toledo?  I know there is no magic bullet or we would all have better things to do than hang around DINET!  But given what you know, do you think he would have any thoughts/approaches that might differ from my neurologist?  If you also have ME/CFS, I would be interested in how you feel he holds that as a co-occuring diagnosis. 

Thanks for any input or ideas any of you can share!

 

 

[Sarah Tee]

@Jyoti, I have not seen Dr Grubb, but I hope you won’t mind my replying anyway.

I have chronic orthostatic intolerance (not POTS), and I also experienced a complete resolution of my symptoms while on steroid treatment for something else (in my case, prednisolone tablets for a week for allergies).

My current specialist also pooh-pooh-ed this, although it was at my first appointment, which was awful. He was late, disorganised, didn’t seem to listen to me, etc. etc. He has redeemed himself since then, maybe because I have since had a male relative accompany me to appointments and take over communication between times. We are going to tackle him again about this at my next appointment.

I would really hope that Dr Grubb would take note of your antibody results and your response to the steroid injection.

[MikeO]

@JyotiJust my thoughts but i would see him for a second opinion.  

[Jyoti]

6 hours ago, Sarah Tee said:

I have chronic orthostatic intolerance (not POTS), and I also experienced a complete resolution of my symptoms while on steroid treatment for something else (in my case, prednisolone tablets for a week for allergies).

That is really interesting, Sarah. And it must have been a nice week in a way?   I have wondered about steroids in general, but am further baffled by the delay in effect in my case.  Why would steroid injected two weeks ago resolve ANS issues?  It is a mystery (and we live in a world most mysterious!).  So probably will never know.  But I am curious.  Could it have been that addressing inflammation in my  lower back did something to my cervical spine (you'd think it would) where I have instability, and took pressure off ....vagus nerve?  Some other brainstem structure?  

 

6 hours ago, Sarah Tee said:

My current specialist also pooh-pooh-ed this

He sounds awful.  I am glad you found someone he will treat well to be there with you and communicate with him.  If ever there was a graduate course in learning to stay focused on outcomes, it is being ill with something like dysautonomia.  We put up with so much in order to get what little we can.  Sometimes it is easier, but it sounds like this guy is going to give you an AP lesson!

 

1 hour ago, MikeO said:

Just my thoughts but i would see him for a second opinion

Always good advice.   Thanks, Mike!

[Pistol]

@Jyoti i was a patient of Dr grubb for years and he helped to diagnose and treat me. If you can see him in April i would not hesitate. I too have to drive 8 hours to see him and did it gladly for years because he was the only one that understood what was going on with me and he patiently tried as many meds as it took to find the right ones.  You dont have to stop seeing your neurologist - Dr Grubb is an electro physiologist that specializes in autonomic disorders and will send any findings or treatment suggestions to your neurologist. He is really outstanding in his field! 

[Sarah Tee]

@Jyoti, it was an interesting week! Annoyingly, I strained my hands gardening on the first day that I felt better, so I didn’t get much done as I had to rest them completely. (It wasn’t heavy gardening, I had just underestimated how “out of shape” my hands were.)

I still have the rest of the bottle of steroid tablets and am planning another “holiday week” soon. Main aim is to make it through a visit to the dentist, but I will also finish a small DIY job (painting a door) and maybe have a couple of mini excursions.

It is interesting that the injection took a while to have an effect, but perhaps that’s how long it takes to work its way out from the injection site. My guess is that when your pain subsided, so did some inflammation, which could be systemic (Sjögren’s?) as well as in your back, and that may be why you felt better overall while the pain was gone.

And, more speculation – I have been reading that steroid medications reduce vascular permeability by reducing the amount of inflammatory substances released by the body. (It is normal to have some vascular permeability, but inflammatory chemicals increase it beyond the normal amount. This is why your ankle swells up if you sprain it, as the capillaries let out extra fluid into the injured tissue to help it to heal. But perhaps in long-term generalised inflammation this same process works against us.)

So maybe some people with OI symptoms have a background or systemic inflammation (auto-immune or auto-inflammatory) that makes their capillaries more leaky than they should be, and steroids can temporarily suppress that extra leak, bringing the blood volume up to normal.

But some people feel worse on steroids, so I don’t know. Just a hypothesis I am nursing until proven otherwise!

Good luck seeing Dr Grubb. Apparently he always runs horribly late, but spends a lot of time with each patient. I have an endocrinologist like that. Take a Thermos and snacks 🙂

[Jyoti]

8 hours ago, Sarah Tee said:

planning another “holiday week” soon

LOL.  Great plan.  It is actually a very good thing, I think, to have some go-to that is either a temporary or emergency over-ride of symptoms.  So you can get important stuff done that would otherwise be almost impossible..

 

8 hours ago, Sarah Tee said:

I have been reading that steroid medications reduce vascular permeability by reducing the amount of inflammatory substances released by the body. (It is normal to have some vascular permeability, but inflammatory chemicals increase it beyond the normal amount.

This is fascinating.  Great speculation!  I immediately went hunting for articles on this and it surely makes me wonder.  I guess the more speculation I can do (aided by you and others!) the more I can bring to whomever it is I see next.  

 

8 hours ago, Sarah Tee said:

Take a Thermos and snacks 🙂

More good advice.  Thanks!

 

On 2/10/2023 at 11:40 AM, Pistol said:

If you can see him in April i would not hesitate. I too have to drive 8 hours to see him and did it gladly for years because he was the only one that understood what was going on with me and he patiently tried as many meds as it took to find the right ones.

Thanks, Pistol, for sharing your experience.  I recalled that you had been a patient of his, and one who had really positive things to say.  Good to know.

[MikeO]

1 hour ago, Jyoti said:

Take a Thermos and snacks

And don't forget your sunglasses.

[Jyoti]

6 hours ago, MikeO said:

And don't forget your sunglasses.

LOL.  If I go....I will be well prepared!

 

17 hours ago, Sarah Tee said:

So maybe some people with OI symptoms have a background or systemic inflammation (auto-immune or auto-inflammatory) that makes their capillaries more leaky than they should be, and steroids can temporarily suppress that extra leak, bringing the blood volume up to normal.

As noted, a definite possibility.  I also just stirred around the internet a bit and found that steroids --injected or ingested--can suppress the HPA axis, which in turn decreases epinephrine and norepinephrine release.   I honestly felt less fatigued during those two weeks than I would usually, so I am not sure how to fit this puzzle together (me and everyone else).....  Still, if my normally high levels of both epinephrine and norepinephrine were reduced....might that have not have had a positive effect on high heart rate?

Just musing and inviting any other thoughts, but without any expectations.....

 

[Sarah Tee]

@Jyoti, I do a lot of musing too. I wish I could speak to a bunch of specialists as though I were a journalist or a colleague from another field, and ask them these sort of questions. In a consultation, they don't seem to be open to general discussion. It's always "Oh, that doesn't apply to you" or "I wouldn't be thinking about that".

Maybe I should study human biology or something so I can learn more myself and pester the lecturers with questions.

If you happen to get steroids again, perhaps you could you get your ep and norep measured beforehand and again while you are feeling better. Although you'd probably have to organise the tests yourself, and then specialists would look askance at the results because the tests weren't ordered by a doctor (even though that makes no difference to how the pathology lab runs them).

I'm afraid that I know nothing about the HPA axis but I am sure others here will have interesting thoughts to offer.

[Jyoti]

12 hours ago, Sarah Tee said:

I wish I could speak to a bunch of specialists as though I were a journalist or a colleague from another field, and ask them these sort of questions

👏👏  That'd be so cool, wouldn't it?  

 

12 hours ago, Sarah Tee said:

f you happen to get steroids again, perhaps you could you get your ep and norep measured beforehand and again while you are feeling better.

Excellent idea.  And you know, pretty much the only way I have gotten anywhere with most of my doctors is to lay out facts in an organized way that leads them to the unavoidable conclusion I have already reached.  Of course I let them think they got there first, but it would be so nice to have someone to just sit down with and look at the big puzzle, pick up a piece and together try to find out where it belongs.  

[Pistol]

On 2/14/2023 at 4:38 AM, Sarah Tee said:

I wish I could speak to a bunch of specialists as though I were a journalist or a colleague from another field, and ask them these sort of questions.

@Sarah Tee It wouldn't make a difference. I have a background in the medical field and have researched dysautonomia extensively, as well as having been educated by my specialist about many details of my personal case. If I have to see a new doctor they dont understand why I am on certain meds or why I have to get IV fluids ( "You can drink, can't you?" ) and I mention I have HPOTS they just look at me with a blank stare. Then they continue to order certain meds that are contraindicated for me, and when I try to explain to them why I cannot take that they think I am hypochondriac, mentally unstable or attention seeking. So I only go to providers that are in the same system as my PCP, so they can look into my medical record. If that is not possible I ask doctors to call my local cardiologist, who has educated himself about dysautonomia and knows my case very well. 

 

[MikeO]

4 minutes ago, Pistol said:

they just look at me with a blank stare

I can remember this happening quite vividly the first time i tried to explain my Whooshing episodes. 

[Sarah Tee]

@Pistol Ah, the blank stare. Better or worse than the eye roll and sarcastic sigh?

:-)

[Sarah Tee]

@Jyoti

Quote

it would be so nice to have someone to just sit down with and look at the big puzzle, pick up a piece and together try to find out where it belongs

That is what I naively thought would happen, especially when I was referred to specialists.

I sometimes read the "medical mysteries" type columns in the Washington Post and New York Times. The patient goes undiagnosed for years until they finally find a doctor who will sit down and listen to them, and who is conscientious and curious enough to do research and contact colleagues outside the consultation.

If I was a doctor, I would never let a patient leave with an "I don't know". Both because it's a horrible thing to do, and for the intellectual challenge and satisfaction of solving a mystery.

But I suppose I would go broke and suffer from burn-out pretty quickly.

 

[Pistol]

9 hours ago, Sarah Tee said:

The patient goes undiagnosed for years until they finally find a doctor who will sit down and listen to them, and who is conscientious and curious enough to do research and contact colleagues outside the consultation.

@Jyoti @Sarah Tee To come back to the original question of this thread: Dr Grubb is exactly that kind of physician. He will not only listen to you but he will SEE you, in your entirety. Not just the illness or symptoms but the whole person. And that is why he understands dysautonomia so well, because it is not an illness confined to ONE system but rather the symptoms affect ALL of us, body, mind and spirit. I am lucky to also have found a PCP and a cardiologist that have the same qualities when it comes to treating their patients. I had to kiss a lot of ( slimy ) frogs to pick my princes! Keep looking, they are out there!

[Jyoti]

9 hours ago, Sarah Tee said:

The patient goes undiagnosed for years until they finally find a doctor who will sit down and listen to them, and who is conscientious and curious enough to do research and contact colleagues outside the consultation.

 

3 minutes ago, Pistol said:

Dr Grubb is exactly that kind of physician.

I just read a bunch of his papers and watched a few talks and....I get it.  I am going!   Thanks all, for your contributions to my decision.

[MikeO]

6 hours ago, Pistol said:

I had to kiss a lot of ( slimy ) frogs to pick my princes!

Haha tell it like it is. I have used the kissing mud puppies.

 

6 hours ago, Jyoti said:

 I am going!

If you remember ask why (mestition helps some of us) 

[Jyoti]

19 hours ago, MikeO said:

f you remember ask why (mestition helps some of us) 

If I get a good explanation, you will be the first to know!