Any insight appreciated....

[Nikki J]

Who is Fady and where may we find his story? If your wife had arsenic toxicity that was documented by this doctor then her original work up was incomplete. Heavy metals are something tested when ruling out other causes. How is your wife being treated for her issues. I hope things go well for you but I remain highly skeptical/ disbelieving that this is legitimate

 

[Lixen]

"I agree, we don't want to give false hope but we met Fady who's ALS was far advanced, he was scheduled to put in a feeding tube and ventilator. He can walk again and use his arms pretty well. We don't think this is false hope, we see it as two success stories."

The thing about the internet is anyone can post anything. They can indeed give false hope under the pretense of sharing a success story while making a shameless plug for an unknown pediatric surgeon in another country who also specializes in 'curing' AlS, or advertising some miraculous herbal supplement. Your story, at face value, simply doesn't add up. At all. And for reasons too numerous to count. As Nikki has said, "due diligence", folks.

 

[Blondrea]

Thanks for the words of wisdom, Lixen.

 

[Green Queen]

Unfortunately I'm the kind of person who takes everyone at face value, trusting that they will do by me as I do by them.
But even I am very weary of anything claiming to heal the diseases like ALS, MS etc, that years of research and many small breakthroughs have not been able to cure.
Am I more cynical in my old(er) age or just more realistic?
God bless, Janelle x

 

[gooseberry]

Hey Pete-It is so interesting how similar some things are with you and Steve. He had only lmn signs at diagnosis also and the breathing issues. By the time he went to the usf clinic 3months later, he was having voice changes. It had gone from normal to high and thin to hoarse . The speech pathologist ,Dr. Emily Plowman ,told him the hoarseness was caused by spasticity of the vocal chords. She studies this stuff in Parkinsons and ALS patients. That and a positive Hoffmans sign, which many healthy people have, were his first umn signs.

He , too, has felt leg weakness and hand weakness for quite some time. His bone structure is becoming much more visible.

 

[lgelb]

I looked at Dr. El Murr's Web site. I'll provide the domain name, tanioseliaselmurr, because most people here will recognize egregious pseudoscience when they see it. Anyone who thinks it looks ducky, feel free to raise your hand and we'll explain. I'll just cut and paste the sentence that says it all: Using his experience, and the new techniques, Dr. Tanios El Murr will help you to have a new healthy and painles life.

Not.

 

[affected]

BMiller, diagnosed April then pretty much cured in May.

Sorry, please do your own thread so it can be debated/ignored there. So easy to say stuff on the net and people think reading is believing.

 

[Bmiller]

Hi, thanks for sharing the web URL scoff if you like, but anyone looking for help can check it out. I would be happy to start a new thread in the hope section. If anyone is sceptictcal we don't blame them. The world is full of scammers. After a couple more people try this and post, it will help to build confidence or discredit as the case may be. I didn't say that Trish was cured, I said she can cut her own food. That's a big deal to her.

 

[Bmiller]

Fady's post that led us here and more information can be seen on the Doctors Facebook page : Tanios El Murr , or on the MMN forum.

 

[Nikki J]

I apologize to the members for letting this go on so long. There is no real info to be had on the doctors website or FB page or the FB page of the person who appears to be Fady ( at least without friending them) there is nothing on the MMN forum on the web. The FB group is closed and the minimal information on the doctor's website is as Laurie say pseudscience at its worst. If anyone is even thinking of this please discuss it on the forum. I still do not know if B is victim or scammer but I think it no longer matters

 

[Blondrea]

Kelli, how are you doing?

 

[mkboreson]

Hi Andrea,
Doing ok. The appointment was emotional and frustrating. I kept asking about other things and she just kept writing me off. I am just pretty lost and angry right now. I really want to know WHY it can't be CIDP, MMN, IBM, PLS, etc. I know this is part of my grieving process, but the only answer I am getting is that he is "clinically" diagnosed and the Dr. isn't wrong very often...... I'm ready for summer and to try to be as normal as we can be. Thanks for checking in on me.....

 

[Green Queen]

Kelli, it is a very frustrating time for you, my heart goes out to you.
Have the best summer ever.
God bless, Janelle x

 

[mkboreson]

Thanks, Janelle.... I'm just so confused. The EMG didn't meet the criteria, so why won't they look at other things? I'm looking forward to this summer. He is most likely going to take the disability so that he can spend as much time as possible with our babies. Our oldest will be in kindergarten and he wants to be able to take him to school and pick him up. I am still hopeful that Mayo will give us something different. He had a major back injury about 6 years ago, and I am praying that some of this could stem from that. No MRI of his back. She put him on some anxiety meds, so hopefully that will help with some of his symptoms too. I am trying to be positive and real at the same time. It is a bit like stabbing myself with a knife, while knowing that it is coming. We have lots to live for and we will take full advantage of the time given.... <3

 

[Green Queen]

Kelli sometimes I think the doctors like us in a state of confusion!
From big fancy words (I know we've discussed our dislike of those before!), testing we don't get a complete picture about, long intervals between appointments...
My doctor, who is awesome, said to me only this week 'time will tell,'...seriously?!? Haven't we had nearly 3 1/2 years of time...when does the telling start?
I think from memory, GregK says to live life to the full until a confirmed diagnosis...total agreement here.
I'm glad your beloved is thinking about taking disability. Even if I woke up cured tomorrow, I am pretty sure I wouldn't go back to work. I loved my job with a passion, but this last year, being here for my kids whenever they need me...awesome. Carrah is 13 and in 19 days (he can't wait!) Connor will be 11. No matter what my outcome, time with them is so precious, every minute counts.
God bless, Janelle x