MRI scan

[Lead-foot]

Hi all I’m just after some advice from any other AMN sufferers in the uk, I see my neurologist yearly and on the last couple of visits have asked the question....should I be having yearly MRI scans? His response to this is there is absolutely no point in yearly scans as we already know I have AMN and a regular scan would not be beneficial in any way. I’m concerned about this as some of the posts which I have read on here states that scans are needed to monitor the progression of white matter, is this correct or am I worrying unnecessarily. TIA

[AussieBob]

Tell the clown that you are not discussing diagnosis but rather disease progression The MRI would tell you what is or is not happening and give you clarity and perhaps peace of mind. He seems more interested in your NHS costs. Change doctor if you get nowhere. All the best mate.

[Lead-foot in reply to AussieBob]

Thanks for your reply AussieBob, in effect that’s what I was trying to get across to him but this is when he said it would make no difference if the white matter was expanding as we already know there is white matter there!! My main concern was if I develop any cerebral involvement then it’s too late for intervention, where as if it’s monitored then surly at an early stage I have a better chance of something being put in place.

[AussieBob in reply to Lead-foot]

Absolutely correct. Adult BMTs are done for AMN in Europe and I think the UK email me and I will send you some papers. [e-mail]

[Kranal in reply to AussieBob]

Hi AussieBob - brilliant reply. Clowns! Exactly. Kranal Scotland

[SongStream in reply to AussieBob]

Take it from me, I was diagnosed with adult cerebral ALD at 58. I also heard that there is less likely chance of adult ALD the older you get, but there are cases even in age 60+. Cerebral involvement with Lowes score are the indicator of bone marrow candidacy.

[AussieBob in reply to SongStream]

You are absolutely correct. And women with the Cerabral version

[Mash69 in reply to AussieBob]

I was diagnosed with ALD at 26, at some point they changed it to AMN. I am 54 now and I have seen a neurologist once. I just see an Endocrinologist, who just says I will see you next year. Not a fan of endocrinologists.

[AussieBob in reply to Mash69]

Don’t go just see your neurologist. Endos are at the bottom of the cycle once diagnosed

[SongStream in reply to Mash69]

I hear you about the endo's. I'm not happy with mine especially when I was having symptoms relating to an Addisonian crisis that required up dosing. (Interesting was I had an extreme bout of nausea two weeks prior to the MRI which was when I was diagnosed with ACALD. Did Addison's pick up brain inflammation or when the toxins passed through the blood brain barrier?)

Stanford had suggested that nausea was relative to a crisis but I felt my endo was dismissive. I felt better 2 days after when increasing my cortisone.

Sort of like a superiority complex (endo) but having a rare disease puts you in the driver's seat.

[mariagno]

I am extremely claustrophobic. We do MRI's every 4-5 years. I have had no cerebral involvement as of 2017 and I am 58 years old. I have been told by the late Hugo Moser the older you get with no brain involvement, the less likely it will become.

I think if you already have white matter involvement, annual MRI's make sense. If no, then 3-5 years after talking with your doctor.

Not a lot can be done but if it makes you able to sleep at night, do it.

[Lead-foot in reply to mariagno]

Hi Mariano my diagnosis was 4 years ago where the white matter was discovered I have had no more scans and like I said no more are even in the pipe line! Like you so rightly said this would put my mind at rest if nothing else.

[mariagno in reply to Lead-foot]

Get a second opinion and the MRI. If substantial change I would get it done annually. If no real difference maybe every other year.

[Lead-foot in reply to mariagno]

Thanks for your advice really appreciate it

[monkeybus]

Always get a second opinion. Factor in that the doctor may be looking to divert his limited budget elsewhere. Plus she/he likely has little knowledge of AMN.

I have a brain MRI every six months.

The idea is to have the bone marrow transplant as quickly as possible.

[Lead-foot in reply to monkeybus]

Hi monkeybus thanks for your advice I think I need to get a second opinion, I would like to find a consultant who is well educated on AMN as I feel that so little is known about the illness!

[StevenSims]

Hi,

Where are you located? I have a brain lesion and get scanned every 6 months to keep check on it! I hate mri’s but if it gets active it needs to be caught early or it’s too late!

All the best

[Lead-foot in reply to StevenSims]

Hi I am in the uk (Hampshire) this is my concern if it’s not checked regularly it might be to late to do anything, my first scan showed high signal lesions in the temporal lobes. Where are you located?

[StevenSims]

I’m in South Wales! There’s others on here closer to you and I’m sure they can recommend a neurologist! How old are you? You definitely need a MRI at least yearly!

All the best

[Lead-foot in reply to StevenSims]

I’ve just turned 48, and hopefully those closer to me will see my post and point me in the right direction,thanks for your input 👍

[mjwellman in reply to Lead-foot]

Hi there. I’m based in Newbury and am having yearly MRI’s up at the National Hospital for Neurology in London, with Dr Robin Lachmann as my neurologist. I was able to see him via a referral from my GP after reaching out to Alex TLC. He knows a lot about the condition - you’d be in very safe hands with him. Hope this helps.

[Lead-foot in reply to mjwellman]

Hi there, that sounds fab I will definitely be speaking to my GP. Thanks for your help.

[StevenSims in reply to Lead-foot]

I was going to say Dr Lachmann also! I know a guy from Dorset that goes up to London, there’s also dr Murphy I think

[Lead-foot in reply to StevenSims]

That’s brilliant, this guy sounds like he is worth a visit too. Thank you.

[StevenSims in reply to Lead-foot]

Dr Lachmann attends the AlexTlc weekends and has lots of knowledge! Also the best drs around the world are there too! I recommend that you attend the next one?

All the best

[monkeybus in reply to Lead-foot]

uclh.nhs.uk/our-services/ou...

Go see your doctor, demand a referral to this place. Don't stand for any excuses. This Covid won't be in your favour.

I travel about internationally for my job, and this place is renowned worldwide. Japanese doctors and nurses go there to train.

Get yourself thoroughly checked out.

MRI, with proper consultation afterwards.

Brain stem reaction test.

Hormone levels.

I am sure there must be good local hospitals, but London will get the lion's share of funding, etc. And it's my town.

[monmon]

Definitely ask to be referred to Dr Lachmann at the National Hospital for Neurology and Neurosurgery in London. He is a specialist in metabolic diseases- not a neurologist, but ALD/AMN is metabolic and he knows lots. Hope all goes well ☺️

[Abcd1Kat]

Standard of care for amn is annual MRI—you would hate to wait and find out that damage has been done and you missed an opportunity to intervene. Wishing you luck getting everything scheduled 💙

[SongStream in reply to Abcd1Kat]

My lesions occurred within a year and my Lowes score was an 8! That's 1< of late stage which is 9 to 13 making it highly unlikely for a BMT.

[Aaron98 in reply to SongStream]

You were getting annual MRIs before your lesions appeared, Steve?

[SongStream in reply to Aaron98]

Not really because I premised that my age wasn't a decided factor. Sometimes I did annually or every other year when diagnosed at 37. The Min-102 trial required annual MRI's. This was the first time it showed active lesions with contrast.

[COwithAMN Administrator AMN EASIER Volunteer]

I'll add my recommendations to go and see Dr Lachmann. At your age and with white matter involvement I don't think he will have any problems agreeing to at least annual MRIs. I used to have them on that regularity. Now, with no white matter involvement and given my age (I'm 77) I don't have them regularly which is fine by me.

The other thing about him is that he is happy to be in contact by email, once he knows who you are. His answers will be quick, if terse.

I have been going to the National Hospital for AMN for more than 30 years. I have seen 4 consultants over that time. One retired and two other fine specialists died far too early. Dr Lachmann is thus the most recent of a long line of docs who are on top of the latest research and know what they are talking about.

Dr Lachmann is a metabolic specialist, and will refer you to one of the many other clinics there if it's needed: bladder, bowel, adrenals etc. They are all excellent.

[wilburlois15]

I go to NHNN. My usual contact there is metabolic specialist Dr Elaine Murphy who works for/with Dr Lachmann. There is also a new-ish specialist called Dr Gauri Krishna who I have seen a lot in the past 2 years due to the regular appointments of the MIN-102 trial. They are all on the same team and will all recommend that you have MRI scans, with Gadolinium enhancement, at least once per year. I am 43 and thus far haven't had any cerebral lesions.

[Lead-foot]

Thanks everyone for your reply’s,just to let you know I’m waiting for a GP appointment so fingers crossed he can refer me to Dr Lachmann and his team

[fmorgan458]

So good to see this site's members providing such valuable information to co-laborers! I am in the US and have been told by my neurologist that the best thing I can do is get older. At 62 I hopefully have a long way to go. I started to get MRI's in my forties but haven't had one in a while. With copays it is still rather expensive. A possible bright spot is Minoryx. I saw a post that it affects groups differently. Younger folks can see the benefit of improved mobility. Older folks can see mitigation of brain lesions since it crosses the blood brain barrier. In the USA it is expected to be approved in the near future. Does brain involvement always mean the rapidly progressing deadly type or are there less extreme versions? Thx!

[Lead-foot]

Hi all just a quick update I’ve spoken with my GP today and put my case across and he’s agreed to refer me to DR Lachmann so fingers crossed he will see me. Thanks again everyone for your help and support 👍

[Lead-foot]

Hi everyone, just a quick update...I have my referral to Dr Lachmann I’m seeing him in April. It’s a weight of mind thanks again.