Has anyone seen Dr Bansal or Dr Chaudhuri (UK)?

[Seadragon]

Hi there,

I'm trying to decide between seeing either Dr Chaudhuri or Dr Bansal. My GP has said she will refer me to whichever specialist I would prefer to see. I have already seen several specialists and had very thorough testing and investigations over the nearly three decades I have been ill!

I have signs of immune dysfunction (currently chronic and recurrent chest and throat infections and I also had severely swollen and painful lymph nodes in my neck, armpits and groin for 7 years at the beginning of my illness along with intermittent low grade fever and night sweats and, of course fatigue).

I also have a lot of neuropathic pain and what my doctor calls severe sensory neuropathies which are my most troubling and distressing symptoms.

I have on bloodwork had consistently very high Rheumatoid Factor in recent times, positive ANA for 15 years now, positive Anti Smooth Muscle Antibody, intermittent high ESR (sed rate) and slightly low Free T4. I also have a liver granuloma (revealed on ultrasound 10 years ago - was told it was not significant) and a lesion in my thoracic spine on MRI scan 10 years ago - was told it was not significant).

I thought Dr Bansal would be better more for the immune side and Dr Chaudhuri might be more helpful for the neuropathy which is why I can't decide who would be more appropriate to see for their opinion and maybe some help!

Can anyone tell me of their experiences with either of these specialists, what each of them test for and what treatments are offered?

Thanks,

Bunchy x

 

[jodie100]

Hi, I haven't seen either of those doctors but there is an article here by Dr. Bansal that might give some idea of his approach and other things he checks for http://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0493-0
It is a bit surprising that your doctor doesn't seem to be considering that there may be something other than or as well as M.E./CFS with those abnormal test results, but hopefully an M.E. specialist will be able to clarify this.

 

[Seadragon]

Thank you Jodie for the link. I am too tired to read it all tonight so skipped straight to the treatment ideas! It seems like Dr Bansal takes ME seriously and is at least willing to try a few things other than the usual CBT/GET with his patients which, to me, is a good indicator that he might be someone willing to put his thinking cap on and think outside the box, so to speak.

I'm not really looking for treatment as such right now but more for a specialist who may be able to figure out why I seem to have a strong autoimmune component to my illness and some atypical symptoms too.

Yes I know, my test results suggest something more is going on and my GP thought I had autoimmune disease but further investigations by a rheumatologist haven't revealed anything specific.

Bunchy x

 

[Cheryl M]

I'm not sure whether this comment will be any use to the OP, but I'm just warning any curious readers not to try to see Dr Bansal on the NHS. I attempted to do so and went through a torturously slow referral process with dozens of blood tests, waited months for an appointment and all I got was a brief appointment with a nurse. I then got a letter telling me that the nurse had discussed my case with Dr Bansal and he had given me a diagnosis of CFS.

Phone conversation roughly as follows:

Me: How has Dr Bansal given me an ME diagnosis without meeting me?
Nurse: Oh, he often does that. We discuss the cases with him when we need advice, and if it seems like an ME case he says so.
Me: So when do I see him?
Nurse: See him??
Me: Yes. Meet him. Have a consultation.
Nurse: Why do you want to meet him?
Me: So he can decide whether I have ME?
Nurse: He already has, and Trust policy says specifically that he's not allowed to meet you now you've got a diagnosis.
Me: ...Well, if he's not allowed to meet patients what do you keep him hanging around for?
Nurse: We meet him and discuss the patients with him. I mean, look! Really! Aren't you pleased you've finally got a formal diagnosis after 23 years of illness?
Me: Well, I suppose so, though I'd always assumed it would come from someone I'd, you know, met. But when do I get some investigation and treatment?
Nurse: Investigation?
Me: Yes. SPECT scans and immunological testing and stuff.
Nurse: But you've got your diagnosis!
Me: But when do I get treatment?
Nurse: Treatment?? Such as, um, what?
Me: I don't know. Drugs. Anything.
Nurse: Oh, DRUGS! Oh, well, you'd have to see him privately if you want him to prescribe anything. The Trust's very stern about this nowadays.
Me: Thank you. *Click*

If I had known I had to see him privately I would have done so straight away. I wasted right months in attempting the NHS referral.

The only handy loophole I discovered is that low-income patients can claim back the cost of travel to receive NHS treatment, and since I travelled 350 miles to see the nurse, this was extremely helpful.

 

[wiltedflower77]

Hi @Bunchy just wondering if you saw either of these Doc's and how you got on? I'm currently looking to see someone in the UK. thankyou

 

[Cheryl M]

I've just remembered I never reported back on my appointment with Dr Bansal. It cost £250. He seemed astonished that I'd travelled all that distance just to see him. I had written a summary of my illness; I do this every time I see a potential ME doctor, and I have no idea why, since none of them ever reads it. Sure enough, he didn't. He checked off a list of symptoms. When we got to the hypermobility and clicking joints he ran me through the Beighton criteria, got a positive result and said my GP's surgery should have had me assessed for Ehlers-Danlos syndrome years ago. He told me he would write to my GP recommending B12 injections, which he said helped the majority of his ME patients, but that my GP would have discretion about whether to implement the recommendations.

He glanced through the list of treatments I'd tried and made a few comments. When he got to nimodipine he said he knew others used it but that he was sceptical. I said that benzodiazepines had been helpful and he replied that the B2 injections thing was already controversial and he didn't want to risk alienating my GP any further! I suspect he has a point.

He then mentioned that Ampligen had become a government recommendation in South America and that rituximab looked promising, and said that sadly it might be a long time before those were NHS policy in the UK (or affordable privately).

He gave me this handout listing supplements to try; I hope he won't mind my uploading it here, since most of it is fairly common knowledge. I had already tried most of them to little or no effect. I tried tocotrienol (no noticeable effect) and NADH (seemed rather too strong and to cause crashes). My GP agreed to ten weeks of weekly B12 injections but sadly they didn't do anything either.

When we said goodbye he said he wasn't scheduling a follow-up since I had too far to travel. He does have a pretty good bedside manner, if that coutns for anything; he gives good eye contact.

 

[wiltedflower77]

Thanks @Cheryl M for putting your feedback on your appointment with Dr Bansal. Sounds like he treats symptoms more than anything else. I've tried most those supplements on the list too! Has been helpful to know your feedback. Trying to decide on seeing someone is very tricky when there's so little info available.

 

[Cheryl M]

And so little money...

 

[burgeo10]

Ive just seen Dr Bansal - he was very likeable and along with the sheet above ^ he proscribed me aciclovir (presumably to treat EBV which i tested positive for in July)

If you can see he I would recommend it - but as with any other doctor there is nothing revolutionary he can do

 

[Cheryl M]

My feeling is that his hands are tied - he would love to prescribe Ampligen if he was allowed to, but can't. I think he asked me to hang on for a few more years so the government would approve some drug treatments, though of course my memory is poor.

 

[Seadragon]

Does anyone know if Dr Bansal is still practising now as I heard he might be retiring this year? I live not too far from St Helier.

I put off thoughts of trying to see him or Dr Chaudhuri for a while but thinking about it again now.

Does anyone have recent good or bad experience with either Dr Bansal or Dr Chaudhuri?

 

[Cheryl M]

Sorry, I haven't seen him since my appointment last May. I wrote to him saying I still had OI and he sent me a note telling me to wear strong support stockings or consult a cardiologist.

PS Just clarifying for anyone wondering - he practises at St Helier Hospital in Sutton in London, not St Helier in the Channel Islands!