Hi. I recently asked if anyone could recommend a neurologist in the south west, but unfortunately didn't get any replies.

[deirdrecorr]

At the last ALD family weekend, I remember hearing about a neurologist at Queen's Square, London. Could anyone recommend him and tell me about him? Would he be suitable for me with female carrier AMN symptoms and my son who is deafblind and epileptic? Thanks, Deirdre

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Deirdre

Although AMN is a neurological disease, the impact of the disease seems to be more often dealt with by metabolic specialists. That's why some of us - me included - see Dr Lachman at Queen's Square, rather than the neurology specialists. You could also ask to see Dr Elaine Murphy (also at Queen's Square) who also treats AMN patients.

Both are very good.

There is an ALD specialist at Great Ormond Street whose name escapes me for the moment who is knowledgeable about ALD. I will post it here as soon as I dig it out.

Hope you find a solution soon.

Chris

[deirdrecorr]

Hi Chris,

Thanks for that. Dr Lachman was who I was thinking of!

Am guessing neither Dr has expertise in epilepsy, or do they also deal with that?

Thanks,

Deirdre

[SusanBr]

Hi Deirdre

I see Dr Lachman at Queens Square and referred myself via email.

Live in Hampshire so bit of travel involved, met him for the first time last year and due to see him at the end of this month. However as I see a local Neuro consultant he will just check on symptons and medication and only input if he feels needed, but on his list if any trial comes up that may be relevant.

Worth trying to refer yourself, good luck Sue

[deirdrecorr]

Hi Sue,

Do you have his email address? What does he do when you see him?

Thanks, Deirdre

[bozzer]

Hi there. I live in Bristol and use prof Neil scolding at frenchay. I have AMN. Hope this helps. Mark

[deirdrecorr]

Hi Mark,

That's who I see at the moment. Didn't realise he had any other AMN patients. When I first met him I was his only experience of ALD!

Thanks,

Deirdre

[deirdrecorr]

Hi Chris and Susan,

Would you mind telling me what happens when you are seen by Dr Lachman? Am considering doing a self referral, but keen to assess the benefits before embarking on the long journey to London! Is it just to be on his list in case any trials become available?

Thanks,

Deirdre

[SusanBr]

Hi Deirdre

Sorry not replied before. I found Dr Robin Lachmann by googling him and as Chris says he deals with metabolic medicine. The email address i used is [e-mail] and then I had still to get a referral from my own doctor.

Only been once so far where he went through my and my families history and how AMN was affecting me and what assistance I used, eg. FES, wheelchair, sticks. After going through symptons and what medication I was taking he did some basic checks on legs.

He stated they look after a cohort of about 50 men and 50 women with this condition. Unfortunately there is no disease modifying treatment currently and management is supportive. Said he would keep me under periodic review and am seeing him next week.

Good luck Sue

[deirdrecorr]

Hi Sue,

That's really helpful, thanks.

Do you think I should contact my GP first?

Would it be a good idea to keep mt neurologist as well?

Thanks again,

Deirdre

[SusanBr]

I would try your doctor first, and go from there.

For myself I wanted to see someone who knew about AMN as my Neuro Dr Kipps was brilliant and although my symptons were leading to MS, he perserved and did more tests until AMN was diagnosed. I still see him as he updates any medication etc I need. He is local and easier to get to and has given me an MS nurse who I can call anytime or they will come out if I need help with local issues, eg physio, equipment and they visit to see if they can help with any adaptions around the house etc. Therefore this is all kept inhouse locally and easier for me.

Therefore I asked originally to see Dr Lachmann as he knew more about AMN and he has me on his list and writes to my Neuro consultant and doctor of his findings.

Hope this helps you decide which way to go, Sue.

[deirdrecorr]

Hi Susan,

That's great.

Thanks very much,

Deirdre

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Deirdre

In case you still need it, here is Dr Lachmann's page at UCL uclh.nhs.uk/ourservices/con...

I can endorse Sue's comments about Dr Lachmann.

Best wishes

Chris

[deirdrecorr]

Thank you.

Does Dr Lachmann prescribe medication for AMN or is that left to the neurologist?

Deirdre

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Deirdre

Yes Dr Lachmann is able to prescribe medicine for AMN exactly like a neurologist.

Best wishes

Chris

[deirdrecorr]

Thanks,

Deirdre