I Saw Dr. Grubb Monday I'm So Glad I Did!

[arizona girl]

probably due to auto antibodies that are causing small fiber neuropathy and/or the high insulin and sleep apnea. I also have very low Vitamin D, high cholesterol, mild hypermobility joint along with the recent colon infection, and pcos metabolic syndrome.

He told me that he sees it manifest in several different ways. People who's bp/hr mostly go up, people who mainly drop and people that do both. So that's me people who go up and down. When I'm sitting and standing I mostly have orthostatic hypertension and tachy.

He said the IVIG the neuro wants to do can be effective, but should be used carefully, do to the wide number of donors needed to make it. In the meantime he wants to try and treat the symptoms with an alpha/beta med labetalol or bystolic. The labetalol cost less so he wants me to go on half dosage for a week to see how I tolerate it.

Anyone else use labetalo or bystolic with orthostatic hypertension?

He recommended D3 and didn't feel that the prescription D2 was effective. My D is continuing to drop and went to 12 from 19 in a month. He also gave me a prescription fish oil for the cholesterol.

It was worth the long trip from arizona to see him, the plane ride was ruff the motion triggered one of the presyncope sicker than a dog episodes. Almost, but thankfully didn't loose my cookies.

[Mrs. Burschman]

probably due to auto antibodies that are causing small fiber neuropathy and/or the high insulin and sleep apnea. I also have very low Vitamin D, high cholesterol, mild hypermobility joint along with the recent colon infection, and pcos metabolic syndrome.

Thanks for sharing! I think autoimmunity might be my problem, too. I also have PCOS, along with interstitial cystitis and ulcerative colitis. All are thought to be autoimmune issues. Now I just have to find a doctor who doesn't think I'm just crazy.

[bjt22]

I use labetalol, and it has been very, very helpful for me. I could not tolerate atenolol at all, and was therefore very reluctant to try another beta blocker. My experience was very, very different, though. I did feel a few side effects for awhile. Felt a little groggy and drugged feeling for a few weeks, but it did wear off. Along with catapres, this keeps my heart rate in check rather well. Instead of it jumping to 160+ bpm everytime I stand, it usually doesn't go over 110-120 bpm now. That's quite an improvement, let me tell you. Because my blood pressure is not jumping around as much, I have far fewer incidents of variant/prinzmetal angina as well. Even migraines are improved.

Now, this doesn't mean I'm not orthostatic. I'm still very much so. And my blood pressure still drops, but it feels better than it did when it was dropping from higher bp's and hr's.

[all4family]

I am so glad you went and got that kind of help. Sometimes just answers can give us a peace of mind that is priceless. How much vitamin D did he give you? I was given 50,000 ius. of the D3. Let me know if it helps you. Glad you made the trip, I know that traveling can be so hard, but glad it was worth it for you.

Hugs

Suzy

[ramakentesh]

All the texts on POTS including Dr Grubb's own work state that orthostatic hypertension is a manifestation of hyperadrenergic POTS - an excessive vasoconstrictive or sympathetic response to orthostatic stress.

I assume Dr Grubb is stating that small fiber neuropathy is resulting in denervation hypersensitivity in you. Unfortunately I can inform you that denervation hypersensitivty has never been proven in POTS.

Either way, he has used labetol successfully in patients with sympathetic excess and vandy are investigating methyldopa as an alternative now.

Also it is possible that small fiber neuropathies are caused by an auto inflammatory rather than auto immune problem - where the immune system functions correctly but the inflammatory response that it switches on does not switch off - like in RA, etc.

[Mrs. Burschman]

Also it is possible that small fiber neuropathies are caused by an auto inflammatory rather than auto immune problem - where the immune system functions correctly but the inflammatory response that it switches on does not switch off - like in RA, etc.

Ramakentesh,

Are autoinflammatory issues different than autoimmune issues? And do rheumatologists deal with the former, and immunologists the latter?

Just trying to get some free education here.

[arizona girl]

All the texts on POTS including Dr Grubb's own work state that orthostatic hypertension is a manifestation of hyperadrenergic POTS - an excessive vasoconstrictive or sympathetic response to orthostatic stress.

I assume Dr Grubb is stating that small fiber neuropathy is resulting in denervation hypersensitivity in you. Unfortunately I can inform you that denervation hypersensitivty has never been proven in POTS.

Either way, he has used labetol successfully in patients with sympathetic excess and vandy are investigating methyldopa as an alternative now.

Also it is possible that small fiber neuropathies are caused by an auto inflammatory rather than auto immune problem - where the immune system functions correctly but the inflammatory response that it switches on does not switch off - like in RA, etc.

Hey ram, actually he didn't say what caused what. I have had a very high ANA in the past, that was one of my first findings when they thought I had mixed connective tissue disease 20 years ago. I tend to think that the small fiber neuropathy may be a result of the apnea causing high insulin and the high insulin causing the neuropathy. There are many studies showing the connection between the apnea and insulin and we all know that diabeties on it's own causes neuropathy. The studies are finding it may be the higher insulin not the higher glucose that's the primary cause. In my case my othostatic hypertension/tachy have progressively gotten worse over the years. My episodes where I suddenly tank and bring on presyncope (only pass out was on tilt table) takes an added trigger, and I'm mostly am good at avoiding them, something I wasn't able to do on that puddle jumper plane this week.

He said they are continuing to find new auto antibodies involved in the dysautonomia's, first there was only one now they've identified 5. So, I think he is saying that an auto immune response, even if we don't know which antibody it is yet is the most likely cause of mine. I also have endometriosis, pcos and an sick colon that is going to require surgery, all of these condition can have an autoimmune cause. The neuro think's it is auto immune as well and wants to start IVIG if insurance approves it. If it does improve things then I will know for sure it is autoimmune, if it doesn't the other option is to try and treat the symptoms.

At this point I think his treatment is being directed at treating the symptoms, trying one thing at a time. You know I went to Vandy and they failed to do the Tilt Table Test that would have diagnosed me two years ago, based on my symptoms though they did have me do the salt loading and the inderal, my hypertension actually got worse with these therapies. When I finally had a TTT done, I called the first doc I saw at UCLA, when she found out I was going higher not dropping, she basically scared the you no what out of me and told me I had not been throughly worked up, that many things cause it including cancer. Thankfully my new neuro was able to run most of those tests and rule them out. So, yes I think that I do have an hyperadregenic state, he didn't say that, but pretty much that is what is left and autoimmunity is probably what is causing it for me, not for anybody else on the boards. I think by now we all know there are many causes that can be for different reasons, that bring on similar symptoms. Treatment should be based on trying to determine the primary cause and treating that condition.

You do know methyldopa is an older hypertensive that lost favor due to significant side effects.

But I thank you for your insight, your comments do create thought and discussion, which shows more often then not how different we all are. We are all square pegs trying to be fit into the hole. Some day maybe there will be a square hole our peg will fit in.

[flop]

I've never heard of autoinflamatory as a medical term. As far as I know all inflamation is due to the immune system. Rheumatoid Arthritis (RA) is an example of an autoimmune condition - the immune system mistakenly identifies the synovial lining of the joints as "foreign" and attacks it causing inflamation, the inflamation is what causes the damage to the joint.

There is so much that is still unknown about the human body.

Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS).

Flop

[Mrs. Burschman]

Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS).

Flop

Thanks, Flop. You might have just saved me from an expensive and worthless doctor visit!

Well, frankly, most of them ARE expensive and worthless, but I digress ...

Amy

[arizona girl]

Actually you guys autoimmunity is also treated by neurologists. I was treated for many years by a rheumy because of my positive ANA. Recently revisited one had new labs done, showed nothing. Sent me to cardio where positive TTT was done, told my neurologist he had me come in for an emg, that was norma, then I was sent to a local neuro who specializes in small fiber testing, that biopsy came back positive. The neurologist tested me for a whole bunch of auto antibodies and Dr. Grubb also looks at autoantibodies being study at Mayo, he said they have now found 5.

I will be getting if approved the IVIG infusions from the neurologist. I don't even know for sure if rheumy's are using this form of treatment yet to treat rheumy disorders. Neurologists, however are on the front lines of this treatment.

If you are curious you can go to Phoenix Neurological Associates web page, there is a wealth of info on autoimmune neuro disorders and treatments.

[Mrs. Burschman]

I keep getting the urge to walk on over to the National Institutes of Health and check myself in. Donate my body to science while I'm still alive.

[ramakentesh]

I've never heard of autoinflamatory as a medical term. As far as I know all inflamation is due to the immune system. Rheumatoid Arthritis (RA) is an example of an autoimmune condition - the immune system mistakenly identifies the synovial lining of the joints as "foreign" and attacks it causing inflamation, the inflamation is what causes the damage to the joint.

There is so much that is still unknown about the human body.

Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS).

Flop

Auto-inflammatory = arthritic inflammatory disorder.

In conditions like RA, Ankylosing Spondylitis, Crohns, UC etc, the primary problem is inflammation as a result of abherant inflammatory marker activity - TNF alpha, Interluekins, c-reactive protein, substance P, etc. This could be caused by an autoimmune response in terms of autobodies, but there is also a growing belief in the Rheumy comunity that antibodies are not involved - rather there is a normal anitbody response and then an ongoing abherant local inflammatory response mediated by genetic histocompatibility.

As Im sure you are aware, no antibodies have been identified in AS, RA, Crohns, UC or many other inflammatory disorder. It could be that rather than there actually being a simple antibody attack, there is abherant inflammatory marker regulation.

Again, in small fiber neuropathy no antibodies have been consistently found or proven to result in the nerve damage present - other pathological processes could be at work - and considering the fact that antibodies in many of these conditions prove illusive, some rhuemies would say its also probable.

http://en.wikipedia.org/wiki/Rheumatoid_arthritis

[ramakentesh]

This is highlighted by the success of TNF alpha blockers in many of these inflammatory disorders. TNF alpha is an inflammatory regulator that is involved in local inate immune responses, but its primary role is inflammation rather than hunting nasties.

[dsdmom]

He said they are continuing to find new auto antibodies involved in the dysautonomia's, first there was only one now they've identified 5.

Do you have more information about what, specifically, the 5 antibodies are? Other than AChR? Or could you find out for us?

Thanks!

[arizona girl]

He said they are continuing to find new auto antibodies involved in the dysautonomia's, first there was only one now they've identified 5.

Do you have more information about what, specifically, the 5 antibodies are? Other than AChR? Or could you find out for us?

Thanks!

I can ask his nurse the next time I talk with them. I'm pretty sure though it is Mayo who has found them. I know there is a link to that test on this site. I didn't get the impression that he even needed to test me for them. I think my skin biopsy showing the neuropathy was enough to make the conclusion. Also his point was that there are probably many antibodies causing problems that science just hasn't identified yet. So if you have symptoms, you have symptoms and just because that haven't been able to find the trigger doesn't mean you are not sick, just that they don't know why yet!

Maybe some one might want to talk to Mayo for us! I'm not up to doing that right now, because I'm getting ready to have a colon surgery.

[jjb]

Thankfully things are beginning to shift and other specialists and sub-specialists are becoming interested in immune and autoimmune quriks.

At least w/ peds.

For example, some neurologists and and gastroenterologists that have an interest in autism have began looking for/at and treating these quirky immune or autoimmune issues.

Autoimmune conditions are treated by rheumatologists not immunologists. Immunologists usually treat allergies and immune deficiency states (but not HIV/AIDS).

Flop