Anyone seen Dr Bansal, Dr Lulsegged or Paul Jenkins ?

Hey all

My cardiologist (Dr Gall) is talking about referring me to one or more of these specialists. Has anyone seen them and were they helpful? I'm severe if that makes a difference.

I'm particularly interested in the endocrinologists because I have a history of head injuries and never ruled out hypopituitarism

I did have a clear infectious onset though.

Thanks.

 

Hey @V.R.T.
Sorry I don’t know anything about them. I do hope you find someone helpful soon.


I wondered how these Drs made your short list?, and if it was from some ME related websites could you link,

I have hit a dead end with my 3 local hospitals and I am having some cardiovascular and immunology issues post COVID that I need to investigate.

Is your cardiologist good with ME or LC?

Best of luck x

 

Yeah, have seen two of them, will PM you soon.

 

In my experience Dr Gall (and Prof Lobo, who he works with) are some of the nicest doctors when it comes to ME & LC. They do believe in your symptoms. Sometimes I think they may have difficulty understanding the severity of severe ME symptoms though, but generally, extremely nice doctors.

Also have a look at the PoTS U.K. website for a list of cardiologists if those doctors are not in your area.

 

Thanks @lunarainbows, that’s very helpful advice.

 

Paul Jenkins has amased lots of negative reviews here: https://www.ratemds.com/doctor-ratings/4012985/Dr-Paul-Jenkins-London-ENG.html/

 

Oh dear.

 

I had an excellent experience with Dr Lulsegged - he got my reactive hypoglycemia under control, which had insidiously become my most disabling symptom by far.

Very friendly and empathetic, but more importantly he tried to break all my issues down, identify and treat or refer onwards. Aside from Dr Gall & Prof Lobo i'd never experienced that from a consultant before, someone being methodical and actually wanting to improve my QoL rather than just exclude a few classic diseases and then give me the boot...

 

He is the kindest and most approachable doctor I’ve ever met. One of my other friends (also a complex patient with other conditions), said the same thing about him, that he’s the nicest doctor she has ever met! He will rule out endocrinological issues. He believes complex patients and listens. He also refers you to other doctors.

However, it’s worth knowing that if you remain his patient after ruling out the endocrinological stuff, he is also very interested in a lot of “alternative” things especially nutrition, diets and food related issues, such as the keto diet, MCAS diet, no sugar diet, mold toxicity and low yeast diet, supplements… etc, which some people are happy with and some aren’t.

 

I was in two minds about bringing that up because I didn't want to give the impression he's a quack, but its a very fair point.

If it helps others, Dr L investigated my "classic" endocrine issues more thoroughly than previous docs had - i'd have confidence that he is a very competent endocrinologist. I also later went back to him with concerns over my local Rheumatologist dismissing suspicion & some evidence of Spondyloarthritis - Dr L referred me to his recommended Rheumy specialist and I got the AxSpA diagnosis + biologics that have helped massively.

So despite the open mind he still does the important stuff right, at least in my experience

 

Prof Lobo is retiring before November this year. (May have already retired)

I know this because we moved an appt with him to Nov. The clinic emailed that it would be with someone else as he was retiring. My daughter will have her appointment with another doctor, do not yet have a name.

 

That’s sad. I wonder if the post is filled by someone also understanding of ME patients?

We lose a generation but we don’t have successors do we?

 

That's a shame - I had a wonderful initial appointment with Prof Lobo (1hr+ on the phone) and since then have just had check-ups with his registrars, who don't seem knowledgeable/interested in POTS. They've just pushed for exercise unlike Lobo/Gall.

They plan to discharge me after the next appointment because my BP is stable now, wouldn't be surprised if that's more to do with Prof Lobo retiring!

 

Oh no, this is so sad! He was so lovely, understanding and kind and really smart. That’s probably why they recently changed my usual doctor from Prof Lobo to another person in his team. I was going to ask to change back to Prof Lobo but it looks like I can’t now!

 

Thanks everybody!

 

Is this thread private? I have experiences with two of the doctors mentioned above but need to know if thread is private before i proceed.

 

Is this a Members Only thread is what I meant?