Dr. Alexandru Barboi At Rush Is Moving

[arizona girl]

Hi all, if any of you hear where he is moving too, would you please post the information here. I was just getting ready to give his information to my cardiologist and now I can't.

Rush won't release where he is going to, which is very common, but makes it hard to find out where they move to.

Hopefully one of you is his patient and will be told where he is going.

[statesof]

Have you been to him? I saw him for one appointment, after my neurologist there diagnosed me with POTS, since he was there autonomic specialist, but he didn't really have any suggestions for me other than the basic drink water, intake salt, and don't overdue things.

[arizona girl]

No, I haven't but there are several forum members who think he is great. How long ago did you see him? His bio at rush, said he is now doing skin biopsy for small fiber neuropathy and specializes in autoimmune neuromuscular diseases. A small but very specialized area of neurology. However, I don't know what treatment plans he offered to his patients.

What type of testing did he do for you?

[dacubster]

Glenbrook/Northshore Hospital.

[dacubster]

Just wanted to add he hasn't left yet (July). I see him and really like him.

[statesof]

He did my TTT, before I was a patient for him, but when I did see him he didnt suggest any medications, or other tests (though i've had all sorts of blood tests and mri's in the past), and couldn't really definatively tell me anything about my symptoms; like which symptoms fit for POTS, and which clearly arent (I have more than one neurological disorder). Though you shouldn't take this as a personal critique just about him, because for the most part all of the doctors i've seen seem to be at a loss for being able to figure out my symptoms, or definatively say ok these symptoms are not POTS, lets try and figure out what they are. So for me he wasn't helpful other than giving me a diagnosis of POTS, but neither were neurologists i've seen at mayo clinic, so i think it depends really on your symptoms and if you have more than one thing wrong with you and how well your symptoms fit into the norm for this disorder, mine tend to not.

[arizona girl]

Thanks Ebo, at least we will know where to look. Looks like he is not taking new patients at Rush, so probably just fitting in his current patients until he leaves. Do you know why he is moving on? Guess we will have to wait until July for the info. BTW welcome to the forum, I see your a newbie, with only a few posts.

States, totally understand what you're saying. The initial salt/water loading didn't help me at all, and no one could initially tell me what was from what. That is still hard to figure out sometimes, even though I think we know cause now.

I was similar I had several underlying causes that were hard to find because I had hypogamma on board and didn't know it. That made finding the antibodies for the autoimmune diseases harder, as they don't always show up with hypogamma. The autoimmunities were attacking my small fiber autonomic nerves and I was also have a hyper compensatory response. Several kinds of biopsy along with some blood work and my tilt table finally uncovered everything. With treating everything underlying, my progression for now has slowed way down and I've even had some improvements. I never feel great though and still have triggers like standing, heat and alcohol. I keep hoping to know what normal feels like. I will say though I got very lucky with my neurologist, who knows about SFN and who gets that small fiber damage can be caused by many things, and actually looked.

I hope you're treatment plan for the other disorders gives you some relief.

[dacubster]

Thanks for the welcome. I've been on the boards for years but just never posted. Felt like I should post though to help out when someone had a question I could answer.

I have only started seeing him since early the beginning of the year so he was taking new patients up until that time, but was definetely 3-4 months wait to get into.

And I personally had a different experience than states. He offered different types of new medications to me (none of which my other doctors had thought of) and traced a lot of my symptoms to the POTS. He also ran lots of specialized tests which none of my previous doctors had done. I had come in with the POTS diagnoses so he did know what he was dealing with but he just speaking with him made me feel so reassured. I was also able to easily contact him whenever I was having problems or had questions.

[statesof]

Hey Ebo, just out of interest, because i'm actually going back to my first neuro at Rush this week, what types of medication did you discuss? And what other specialized tests did they do? Cause like I said i have had alot of different blood work and mri's, eegs, to rule things out prior to seeing Barbio so maybe thats why no further testing was done, but I'm always interested in knowing what else is out there that might help my doctors figure out the cause of my symptoms.