Frustrated and concerned

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Frustrated and concerned

Postby Sunsetjoe » Mon Jul 23, 2012 2:25 am

Here's my story, about 4 months ago my wife woke up with blurriness in her right eye, she immediately went to see an eye doctor, vision was fine 20/20, ran some optic field tests, and saw something, then sent her to a optic neurologist, he diagnosed her with optic nuritis. He sent her for a MRI, with dye injected to spot any flare up's. The results came back with 3 brain lesions. The optic nueroligist told her she had a 53%-58% chance of getting MS. Obviously very alarming! He referred us to a MS specialist. We went and this doctor was extremely cold and insensitive, he gave her all types of finger to nose and walking tests which she had no problems with, and then viewed her MRI, he told us she had a 80% chance of getting MS and should get on med's immediately, (even way more alarming) did not like his bedside manners one bit, nor his explanation on the 80% chance of getting MS, he said everybody had different %'s. On what basis???? Went for a second opinion, this time to a general nueroligist who was highly recommended (25 years of experience) not a MS specialist. He gave her the same coordination test, which were all fine, and looked at her MRI, he agreed that along with the optic nuritis and the 3 brain lesions their was a possibility of developing ms, but not necessarily. He's aid the lesions could be from many different things and she could have had them for many years. His suggestion was to have a MRI every 4-6 months to monitor any new ones, and obviously pay attention to any new symptoms. After this visit, we felt a lot better, but he did recommend seeing the ms specialist in his health system, which we did. Now we also had blood work done which didn't show anything out of the ordinary. Went to other specialist, same coordination tests, looked at MRI, and basically diagnosed my wife with early stages of MS, no %'s, just a diagnose. She broke down, and was extremely upset, i've been with her at every visit, and I had a hard time undertanding how this last doctor could so easily give her this diagnosis without ruling everything else out. This is a life changing diagnosis and he gave iit her like it was a sinus infection, very disturbing for both of us. She is my soulmate and I felt her sadness deep in my heart when he told her this. He immediately suggested she get on med's, we listened and took down all the info and left very upset and frustrated. She had no other MS symptoms, exercises and has a Very heathy diet, mother of two, 13 and 10, which also keeps her very active! We decided to take a break from doctors, we have prescription for another MRI in 4 months, which we will have and then seek out another doctor. We live in palm beach county,FL. We are not the kind of people that are in denial and we want to be very proactive in addressing this problem, but to begin med's without the full understanding of what's going on, and especially since she has no other symptoms is a huge pill to swallow. The med's r a life long commitment. If anyone has any input on this, it would be greatly appreciated. Thanks for listening.
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Re: Frustrated and concerned

Postby DougL » Mon Jul 23, 2012 4:59 am

Sunsetjoe wrote: We decided to take a break from doctors


hi ssjoe. welcome to TIMS.

sorry for your troubles. what you said above is probably a good idea. sometime it is best to just step back and take a breather.

there is a lot of reading you can do here. what you are going thu is quite common
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Re: Frustrated and concerned

Postby jimmylegs » Mon Jul 23, 2012 9:16 am

welcome to TiMS, joe, sorry to hear your tale. if your wife would like to rule out a nutritional component, i can help there, eg look to see whether any aspects of the very healthy diet, might possibly be contributing. also, standard bloodwork doesn't usually touch on any of the nutritional knowns associated with ON and MS, so if you want a list of info on that, check out my 'signature' links below for more info. feel free to ask any questions you may have.
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Re: Frustrated and concerned

Postby want2bike » Mon Jul 23, 2012 1:36 pm

Dr. Swank treated MS for 50 years using a specific diet. You might check out his diet. There are studies showing the drugs do not work. It you are interested in Dr. Swank's diet google it.

http://www.overcomingmultiplesclerosis. ... gram/Diet/

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... .html?_r=2
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Re: Frustrated and concerned

Postby Sunsetjoe » Mon Jul 23, 2012 4:57 pm

Thx for the Swank referral, much appreciated. And thx Jimmylegs for the nutritional input, I'll check out those links. Thx again, any input helps!
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Re: Frustrated and concerned

Postby jimmylegs » Mon Jul 23, 2012 4:59 pm

np :) ps. i think 'my regimen' has the most detail and most recent updates.
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Re: Frustrated and concerned

Postby lyndacarol » Mon Jul 23, 2012 6:34 pm

Welcome, Joe; you and your wife have seen the gamut of neurologists! I vote for sticking with the general neurologist with 25 years of experience. Although he is not "an MS specialist," he seems to have the best grasp on this disease. If you felt rapport with him, he may be willing to take your wife on as a patient and work with the two of you.

You are correct to wonder how the last doctor could give her the early MS diagnosis "without ruling everything else out." MS is a differential diagnosis and is ONLY made by ruling everything else out! I realize that many neurologists and even the National MS Society recommend immediately getting on one of the DMD's (disease-modifying drugs), but I tried three of them (Betaseron, followed by Avonex, and then Copaxone), did not feel they helped, and chose to discontinue them. I do not feel there can be an effective drug until scientists identify the cause of MS.

I commend you for sharing the journey with your wife – you are understanding and supportive; it is not easy. This community wants to be supportive of both you and your wife. We are good listeners. There is LOTS of information here – LOTS of reading! All the best to you.
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Re: Frustrated and concerned

Postby Sunsetjoe » Tue Jul 24, 2012 3:40 am

Thanks Lyndacarol, I appreciate your feedback. We are taking a break from all the doctors for awhile. My wife is trying to process all this at once and it's a lot. Especially since the doctors all have different diagnosis. That's amazing.....their are so many gray areas! Thx Jeff, we're staying positive, it's the only way!
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Re: Frustrated and concerned

Postby KellyLustham » Tue Jul 24, 2012 4:13 am

This is my first time in this community, and I read this one. I think I will have to read more something like this so I will be aware of what are the symptoms of any illness that I might encounter in the future.
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