Looking for a doctor specializing in multiple sclerosis

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thisisreallycomplicated
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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Fri Feb 08, 2019 11:39 pm

The reason I'm asking about the cause, is because it can make a difference in what form of B12 would work best. And what she'll need to do longer-term. It could also help with ruling out MS, if there's an obvious cause, and you can't find a good doctor.
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

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Space Cat
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Re: Looking for a doctor specializing in multiple sclerosis

Post by Space Cat » Sat Feb 09, 2019 1:25 am

passport wrote:
Fri Feb 08, 2019 9:51 pm
Had a question about finding a quality rheumatologist in PV many years ago.
I checked with the American Rheumatology Association for Chilean medical doctors who are members. There were a few and I contacted them. You can do the same thing for the American Neurological Association. Any Chilean
Doctor who makes the effort to belong should be well versed in current standards of diagnosis and treatment, as well as relevant research in progress.
Great idea but unfortunately there are no Chilean members.
thisisreallycomplicated wrote:
Fri Feb 08, 2019 10:40 pm
Do you know what might have caused the B12 deficiency? I was a vegetarian, and didn't take supplements. So it was inevitable for me. Some people get enough B12 in their diet, but don't absorb it for some reason. One possibility is long-term use of acid-inhibiting medication, like Prilosec and some others. Nitrous oxide from the dentist can also affect some people.
She's not vegetarian but I will ask about medications. I think it's an "organic" problem because there are other deficiencies that came along.

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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Sat Feb 09, 2019 2:11 am

Space Cat wrote:
Sat Feb 09, 2019 1:25 am
thisisreallycomplicated wrote:
Fri Feb 08, 2019 10:40 pm
Do you know what might have caused the B12 deficiency? I was a vegetarian, and didn't take supplements. So it was inevitable for me. Some people get enough B12 in their diet, but don't absorb it for some reason. One possibility is long-term use of acid-inhibiting medication, like Prilosec and some others. Nitrous oxide from the dentist can also affect some people.
She's not vegetarian but I will ask about medications. I think it's an "organic" problem because there are other deficiencies that came along.
It's typical to be deficient in more than one. Vitamin D is one that's common, along with B12. Omega 3's are also important for repairing the myelin sheath around her nerves, which acts like the insulation on electrical wires. I'm assuming the lesions you mentioned, are due to myelin not getting repaired like it normally should. And the Lhermitte's happens, when the spinal cord is stretched. And the nerves with damaged myelin (insulation) pass over each other, and signals get mixed up.

This is a really good site, for B12 info:
https://forums.phoenixrising.me
The site is specifically for a related condition, but the B12 discussions are generally useful. This thread discusses a particular probiotic that might help:
https://forums.phoenixrising.me/index.p ... ger.37324/
I haven't tried it myself. But I sent some to my aunt, and she said it fixed some issues she was having. It's pretty powerful, so if she tries it I'd suggest starting with a very small dose. This is the one I sent my aunt:
https://aorhealth.com/products/probiotic-3/
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

thisisreallycomplicated
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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Sat Feb 09, 2019 2:29 am

I'm not a doctor. But the way I understand it, is your body periodically removes damaged myelin from your nerves. Then normally replaces it with new myelin. But if it's unable to replace it, because it doesn't have all the necessary materials (B12, B9, omega 3's, etc.), the nerve will remain uninsulated (the lesions?). Then it will eventually scar over. And that scarring may be permanent.
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

thisisreallycomplicated
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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Sat Feb 09, 2019 6:38 am

I just did a search on "myelin scar tissue", and found that "lesions" probably refer to actual scarring. So she may already have some scarring. But her system can compensate for "some" scarring, to the point where she won't even notice it. And overall she may end up feeling better than ever, if she corrects some long-term deficiencies (B12, D, etc.), before they cause too much permanent damage.
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

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Re: Looking for a doctor specializing in multiple sclerosis

Post by Gloria » Sat Feb 09, 2019 9:56 am

If she has Fonasa, in Beauchef 639 there is an office with lists of doctors and their specialties. Clínica Alemana in Valdivia also has neurologists.
https://portal.alemana.cl/wps/wcm/conne ... s+Multiple

On the first floor there is an area for doctors appointments where they may be able to guide her.
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Re: Looking for a doctor specializing in multiple sclerosis

Post by Space Cat » Sat Feb 09, 2019 12:19 pm

thisisreallycomplicated wrote:
Sat Feb 09, 2019 6:38 am
I just did a search on "myelin scar tissue", and found that "lesions" probably refer to actual scarring. So she may already have some scarring. But her system can compensate for "some" scarring, to the point where she won't even notice it. And overall she may end up feeling better than ever, if she corrects some long-term deficiencies (B12, D, etc.), before they cause too much permanent damage.
Sounds promising, before I had no idea that it's reversible to some degree, thanks!
Gloria wrote:
Sat Feb 09, 2019 9:56 am
If she has Fonasa, in Beauchef 639 there is an office with lists of doctors and their specialties. Clínica Alemana in Valdivia also has neurologists.
https://portal.alemana.cl/wps/wcm/conne ... s+Multiple

On the first floor there is an area for doctors appointments where they may be able to guide her.
Thank you but she has already visited a neurologist in Alemana. He went on this typical old-male-doctor-who-knows-everything routine "darling, you are too young and it's all in your head". Then a week later he saw the MRI results, changed in face with something like "oh, I couldn't imagine" and recommended contacting somebody who's dealing with this disease more often to get the definite answer.

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Re: Looking for a doctor specializing in multiple sclerosis

Post by Gloria » Sat Feb 09, 2019 1:35 pm

I did some search and found this doctor that hopefully may help her.
https://www.doctoralia.cl/medico/suarez ... e-14786415
He´s in Osorno. Don´t know if he totally specializes in MS but by calling and asking the right questions she may find if he´s suitable for her or not. The next step would be Santiago. There are plane tickets more accessible to the capital and the flight takes only 1 hour or so.
Once again, tell her to walk to Fonasa ( whether she´s part of it or not). They keep a list printed of doctors almost at the entrance of the office . She may have to sorted them out with a phone call. Neurólogo is the key word but they specialize in different illnesses of neurology.
I'm from the generation of common sense, wisdom and unfiltered answers. I sayeth as I seeth.

thisisreallycomplicated
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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Sat Feb 09, 2019 5:40 pm

There's probably no reason to wait for an MS diagnosis to treat her B12 deficiency. Read "Should I begin treatment straight away?" on this list of FAQ's:
http://www.b12d.org/faqs

Generally the only reason to wait to treat B12, is if you're waiting to get diagnosed for a B12 deficiency. But she's already been diagnosed with B12 deficiency. But ask her doctor to make sure.

Following the correct treatment protocol is very important. Read this:
http://www.b12d.org/protocoltreatment
I've read that some doctors follow a protocol that only gives 1 injection per month, but that's probably not enough. And some will use the cyanocobalamin form. But it's not the best, especially when you have better options here, like hydroxocobalamin in "TOL 12 Forte". Methylcobalamin is another option. The best form will depend on your friend's condition.
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

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Re: Looking for a doctor specializing in multiple sclerosis

Post by Gloria » Sat Feb 09, 2019 5:48 pm

thisisreallycomplicated wrote:
Sat Feb 09, 2019 5:40 pm
There's probably no reason to wait for an MS diagnosis to treat her B12 deficiency. Read "Should I begin treatment straight away?" on this list of FAQ's:
http://www.b12d.org/faqs

Generally the only reason to wait to treat B12, is if you're waiting to get diagnosed for a B12 deficiency. But she's already been diagnosed with B12 deficiency.

Following the correct treatment protocol is very important. Read this:
http://www.b12d.org/protocoltreatment
I've read that some doctors follow a protocol that only gives 1 injection per month, but that's probably not enough. And some will use the cyanocobalamin form. But it's not the best, especially when you have better options here, like hydroxocobalamin in "TOL 12 Forte".
Is TOL 12 Forte a brand? Is it over the counter or a must to get a prescription? I'm interested in knowing more.
I'm from the generation of common sense, wisdom and unfiltered answers. I sayeth as I seeth.

thisisreallycomplicated
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Re: Looking for a doctor specializing in multiple sclerosis

Post by thisisreallycomplicated » Sat Feb 09, 2019 6:04 pm

Gloria wrote:
Sat Feb 09, 2019 5:48 pm
thisisreallycomplicated wrote:
Sat Feb 09, 2019 5:40 pm
There's probably no reason to wait for an MS diagnosis to treat her B12 deficiency. Read "Should I begin treatment straight away?" on this list of FAQ's:
http://www.b12d.org/faqs

Generally the only reason to wait to treat B12, is if you're waiting to get diagnosed for a B12 deficiency. But she's already been diagnosed with B12 deficiency.

Following the correct treatment protocol is very important. Read this:
http://www.b12d.org/protocoltreatment
I've read that some doctors follow a protocol that only gives 1 injection per month, but that's probably not enough. And some will use the cyanocobalamin form. But it's not the best, especially when you have better options here, like hydroxocobalamin in "TOL 12 Forte".
Is TOL 12 Forte a brand? Is it over the counter or a must to get a prescription? I'm interested in knowing more.
It's over the counter, and made by SAVAL:
https://www.savalcorp.com/es/productos/ ... TABLE.html
“Now it’s conspiracy – they’ve made that something that should not even be entertained for a minute, that powerful people might get together and have a plan. Doesn’t happen, you’re a kook, you’re a conspiracy buff!” – George Carlin

Gloria
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Re: Looking for a doctor specializing in multiple sclerosis

Post by Gloria » Sat Feb 09, 2019 6:08 pm

Great, thank you.
I'm from the generation of common sense, wisdom and unfiltered answers. I sayeth as I seeth.

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