Help

[Hillary]

Hi guys, 13 days ago I had a fall breaking my right tibia and left ankle. Been in hospital since. Complications with right leg so still awaiting final plaster and brace. I was in University Hospital Wales for a week now in local hospital. Attached to the main hospital is the Spinal Injuries and Rehabilitation Unit where my Neurologist is based. Registrar has been seeing me since admission. He’s read my notes and obviously been on line but has no prior knowledge of ALD/AMN. he came to see me to discuss my case. He noted that as well as my mobility issues, muscle spasms and possible adrenal symptoms I have a slipped disk. He then proceeded to tell me that all of the above were quite possibly down to the disk and some of the drugs I am on, which are making me ill, and not anything neurological. He went on to tell me that as a bereaved mum, the counselling I have been having for the last 22 years was not helping me deal with the “skeletons in the cupboard “ that I have. He suggests I need a psychotherapist.

I’m feeling very confused, questioning my whole life ethos and emotional. Some words of encouragement would be gratefully received.

Hillary

[monkeybus]

Are you OK, Hillary? Get well soon. My mum broke her hip last year, they couldn't get her out of hospital quick enough.

Who do you trust, a neurologist or a registrar? I know who I'd put my money on, even if they had a sideline in psychotherapy (advice).

Takes a real expert to understand the human back though. Am all for second opinions. I've had five so far.

[Hillary in reply to monkeybus]

Thanks monkey, I’m not ok really. This guy who says he’s a neurologist registrar made me question why I’ve been under Neurology for 22 years as a manifesting carrier of ALD. We all know the side effects of the drugs were on are high, you just counter that with the help you get from them. I’ve already got my private Consultant Neurologist lined up, just need to get this leg in plaster and get out of this place. Thanks for getting back to me

[monkeybus in reply to Hillary]

Plenty of doctors refuse to accept women are affected by AMN. Have to factor that in.

Regardless, as long as he/she doesn't have any power to change the course of your treatment.

[Hillary]

No he can’t change anything, I’ve said I don’t want to see him again and my family are all lined up to complain about his treatment of a vulnerable adult.

[jolocny Volunteer]

Hello Hillary! I'm keeping you in my thoughts and prayers that this gets resolved quickly for you.

Whoever this registrar is, he sounds like a someone that looked into ALD/AMN online and has decided against it as a possible diagnosis. We all know, only too well, that there's very little information that's found online and that it doesn't give a true rendering of what we female ALD/AMN'ers deal with.

I truly hate that he feels that how you've dealt with your child's death is any of his business. Firstly, I'm sure you wouldn't stay with a therapist if you felt they were not helping you deal with it. Secondly, where are his credentials to make assumptions? Do you feel well enough to talk with your Neurologist about him and all that he's said?

I know that you'll get through this because all of us are pretty tough because of what we've had to deal with. Know that you have a lot of support from all of us here to decide what's best for you.

[Hillary]

Thank you Jo, I know all of you guys are here for me, that’s why I posted. He made me question myself and I didn’t like it.

[3WheelWonder in reply to Hillary]

Complete asshole! Who in the entire fuck does he think he is, telling you how you should feel or be.?

[monmon]

Sorry to hear about the surely painful consequences of your fall (talking about broken the bones here - not the a**ehole hospital dr you landed with 😒). I hope you will feel better soon. Sadly your story reminded me of my mum’s - what she’d been ‘advised’ along the way by drs that clearly couldn’t be of any use (ALD what? You mean MS/depression/Alzheimers/disks degeneration/syringomyelia/drugs side effects but surely not AMN as that’s a male thing… anyway, what is AMN? 😡). Pls don’t let ignorance make your journey more painful than necessary. Us girls are still too often pioneers when expecting the medical profession dealing with our end of this disease (said so, here in London we’re super lucky as Dr Lachmann at NHNN is completely on the ball - so there’s hopes). Big big hug, Mon

[Hillary]

Hi Mon, thanks for your post. Love your mums symptoms, mine exactly according to registrar on ward round. I’m getting there but still at the front of my mind set. Saw the surgeon yesterday so have more info on what’s got to happen before I can go home. Restricted on what I can do, getting out of bed and into wheelchair is highlight of my day😂😂 you guys are helping me keep going. I’m in Wales and they only paid for me to see Dr Lachmann once😢

[COwithAMN Administrator AMN EASIER Volunteer]

I agree with what's been said already. Sometimes it can be a lottery as to whether you get a "listening" and knowledgeable doctor or the other kind.

I understand what you are going through Hilary. In 2018 I managed to break my neck of femur when I ran my scooter off a pavement. That set me off on a long period of recovery - three hospitals and a 500 - mile road trip back to London. I also got bad bed sores on both heels, one of which took 4 months to repair. When your legs are stiff and won't straighten, bed rest has its problems. I complained about bed care afterwards and they apologised.

One practical suggestion that may help: say to any doctor prior to a discussion that you are going to record the session on your phone. This is so you can review it afterwards. I hit on this idea last year when I was in hospital for something else. The consultant I said it to wasn't just accepting, she was positively delighted and recommend to the students gathered around the bed that they should encourage this in future. So, good doctors are pleased to have their opinions on record. It also means that if they refuse, your next step is to ask for someone else.

Hilary, don't lose your confidence over this episode. Leg breaks are awful when you have AMN. We understand.

Chris

[Hillary]

Thanks Chris, your right my confidence has taken a big knock. I needed all of you on here to help my mental health, I’ve been trying to explain to the big guy, Dr who’s ward Im ,on, that I was here with a broken tibia and fractured ankle and reasonable mental health prior to seeing the neuro registrar. Now I have the broken bones but I’m questioning the whole 23 years of being diagnosed and the way I live my life. Since Sam’s death I’ve promoted recognition of ALD/AMN, two weeks ago was on a zoom meeting with a lecturer at Hallam uni in Sheffield. They are doing a paper on how diagnosis is given to parents. What this guy said to me hurt, am a in a position to give advice when I’m not dealing with my own problems? The support on here is amazing and your all keeping me going, just need to see the surgeon tomorrow with a view as to how long before I go home. Thank you again for your post.

Hillary

[Cherie]

Hi Hillary

I can't say much more than has been said already. Don't let him bully you as he obviously has no idea of our condition. Keep being strong and it's good to hear all your family are helping you through this tough time.

[Hillary]

Thanks Cherie, the family are supporting me, thank goodness for face time. All the support on her too. I’m just looking forward to being able to go home xx

[mariagno]

Hillary, I have broken ankles 3 times with surgery to repair. I have broken my hip and a vetebrae, all due to falls.

First, if you need some help either with crutches or a wheelchair, talk to some one.

As for the doctor, that is horrific.

But many, many medications designed to help can also hurt. If taking a few drugs they can combine in not great ways.

I would go to a good general practitioner and do a thorough med check including supplements. I would increase exercise.

I am sorry you are going through this. Different doctors often prescribe without considering the patient. I was taking many layers of drugs and have stopped all but provigil.

I exercise and stretch 30 minutes a day. I eat better.

I have never felt better since 1995 when I was diagnosed and I am 59 years old.

God bless!

[Hillary in reply to mariagno]

Hi, thanks for your message. I’m aware that when taking medication you have to work out if it’s going to give you some advantages over the down side of contra inductions. I frequently go through my meds with the pharmacist and GP working out the best way to handle things. I’m still in hospital but I am able to do some very low key exercises with my legs and weight lifting for my arms and upper body.I can’t wait to get home to better eating, vegetables and fruit are very low down on the menu here in Hospital.