Doctors?

[Tim76]

I live in Dallas and have AMN. Having a hard time finding any doctors that have any experience with it locally. I have had some neurologist at UT Southwestern over the years that have been helpful but they don't stay there long. I'm thinking of flying to Boston to see Dr. Eichler. Is anyone else seeing him and is their value in seeing him? Or can anyone recommend a neurologist in the Dallas are familiar with the condition? Thanks for any help!

[JasonHarnum]

hi,

Just curious, what were you looking to get from meeting Dr. Eichler? I ask because there's very little a Dr can do for us with AMN.. You money might be better spent going to a Cowboys game .

Heck, if they had your medical records, a phone/skpye consult might be even better?

[Tim76 in reply to JasonHarnum]

Hey Jason,

Cowboys games were a waste of money last year but hopefully this year will be different. 😃

I'd like to share how doctors have been helpful to me in the past. Because of them, I have been put on hydrocortisone and monitored for Addisons. I have been prescribed baclofen for spasticity and so I can sleep. I have been referred to a urologist so I can self cath to avoid waking up all night. I've been referred for carbon fiber orthotics to aid in keeping my toes up when I walk so I don't trip. I've been given injections so I can have intimacy in my marriage. Lastly, I've participated in 2 clinical trials on my own that were available over seas but not in the US. I don't know what else is out there that can help nor do I know how I compare to others with our condition so I can know what I have to look forward to. I was thinking Dr. Eichler had more cases and perhaps could provide some insight or refer someone locally or, like you said, provide consultation on a regular basis without having to visit.

[JasonHarnum in reply to Tim76]

Hey Tim,

Have you reached out to ALD Connect?

aldconnect.org/contact_us.php I've connected with several of them in the past, they're great people. Thankfully we live in a connected world so, most of the info is available online. I think the group would be interested in the clinical trials you were involved in. Think they have a conference coming up in November, it would be cool if you came and shared your story with them. I can't speak for them but I'm sure they would love to hear your experiences..

[monkeybus in reply to Tim76]

What were these clinical trials, Tim?

[Tim76 in reply to monkeybus]

I am currently self participating in the MD1003 clinical trial which is just 90 mg of Biotin each day and I have done this one in the past:

A Clinical Trial for AMN: Validation of Biomarkers of Oxidative Stress, Efficacy and Safety of a Mixture of Antioxidants

Drug: N-acetylcysteine

Drug: lipoic acid

Drug: vitamin E

My thought process is this: I don't want to wait 2 years or more to find out the results while I continue to decline. If it doesn't work, nothing lost but if they do help, I'm ahead of the game!

[Tim76 in reply to Tim76]

Sorry, it's 300 mg of Biotin each day

[monkeybus in reply to Tim76]

Tim76 , I did the same. I took your above drugs for about 6 months. I've posted my full supplement list before. About 20 different powders, I'll re post in a bit.

The only one I didn't take was Vitamin E, which is a supreme antioxidant.

I received my Vitamin E last week and I'll start again weighing out my powders.

I am going to drastically up my dosages, but despite my disappointment at not being cured overnight, it put me on to ALCAR.

I've posted about ALCAR before. I'm sure that Mitochondrial nutrition as well as antioxidants can only help us.

I'll post more in a bit.

[COwithAMN Administrator AMN EASIER Volunteer]

Hi Tim

I think it is entirely reasonable to think about visiting Dr Eichler. Over here in the U.K. we have met him several times, most recently at our ALD/AMN patient weekend here. As a matter of fact, you can see his presentation he gave us here a few weeks ago.

aldlife.org/latest-news/flo...

massgeneral.org/children/do...

He is a very kind and helpful Doctor so if you were to give him a call I think he would try to assist one way or another. As others have said, AMN has no cure but some therapies are helpful, especially with things like spasticity. The value on going to see someone like Dr Eichler is that he has experience with AMN, so he can base any advice on what he has seen with others. Experience of dealing with AMN is not very widespread, so that's where his value lies. He is also active with new trials etc.

All the best

Chris

[Tim76 in reply to COwithAMN]

Chris, thanks for the reply. Appreciate it!

[mariagno]

I see Dr Charles Greenfield at Texas Neurology off Gaston Avenue..

I have seen him for 10 years or so. The practice is heavy mix of MS patients. He is familiar because of me on AMN. Since there is not a lot that can be done directly, we focus on the symptoms. Since the symptoms mimic MS, the practice has lots of treatment.

Dr. Greenfield was part of the resident tag team at UTSW when I was being diagnosed by Dr. Rosenberg in 1994.

I had been seeing Dr Elliot Frohman at UTSW. He was very familiar since he had spent time at Johns Hopkins at Kennedy Krieger but he became to hard to see.

Greenfield is very open to trying things when I find new things. He is laid back and not aggressive on the meds. He definitely does not want to do harm.

For the most part, I take Gabapentin and Baclofen, mostly at night. He allows me to vary the dosages based on the day. That is all I take for the AMN.

I have found that dropping weight has been the best thing and using a NuStep recumbent elliptical.

texasneurology.com/

[Tim76 in reply to mariagno]

mariagno, thanks for the info!

[monkeybus]

I'll weigh in on this thread. Depending on the severity of your symptoms, some symptoms are quite treatable. My fatigue, spasms and spasticity.

Some doctors are more open to off-label prescriptions. Also, some are sitting on huge research budgets.

We all need a lot of expensive tests, and them drugs ain't cheap. Let some University budget take the strain.

Finding a decent neurologist is essential.

Take care folks.

[JasonHarnum in reply to monkeybus]

hey MonkeyB-

Why is finding a neurologist essential?

[monkeybus]

I said a "decent neurologist".

Like I said, they aren't all equal. Some are more open to prescribing a wider range of meds.

We are all different. My first neurologist said Valium and Baclofen, take it or leave it.

My latest one, Gabapentin, Lyrica, Amantadine, Modafinil. He'll even write me a letter for customs for the stuff I import.

Also, by hunting about for a decent neurologist, I was properly diagnosed with AMN, not HSP.