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Old 05-13-2014, 11:33 AM #11
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I'm so sorry HC.. These sx could be from MS or something else. As Judy
suggests, Please do check with your Neuro and let us know what he says.
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Old 05-13-2014, 10:03 PM #12
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It seems you are not being well informed about MS and its various manifestations. I read a few books on it from the library not too long after diagnosis. One of the valuable books was by Roy Swank MD. I can't remember whether his first comprehensive book was called "The MS Diet Book" or if that was the second one...I don't have the books because a forest fire in 2000 destroyed my library, which was filled with toxic smoke so that no one could even touch the books without gloves.

Dr. Swank not only recommends a diet for MS, but he explains WHY he recommends it, and what saturated fat does to exacerbate MS, in his opinion. He discusses MS as a worldwide phenomenon, where it is prominent, where not, and what periods of time made it less prominent (WWII when there was less fat in the diet, MS less prominent).
He describes how the damage is done to the myelin sheath.
You need to get a variety of reading materials, if your eyes will take this, and see the various effects and symptoms. If you can't read a book easily, there are books on tapes for many different subjects at the library.
It seems your Neuro is not the type who fills in the information so you can understand well. She does not think you need to understand in order for good care to occur, but you are having further symptoms which probably should be looked at, and they are not necessarily "just" due to depression. A person can be depressed about her condition and her life and still have physical manifestation.
I cannot take ANY anti-depressant because of having another ailment, Porphyria, in which some drugs cannot be taken.
I was told to just go out and live my life, symptoms and all, at your age. I muddled through, sometimes muddling well, but I would have done better with knowledge! Possibly much much better, and my relatives would have suffered less, too.

It is hard to live without a pill when one is depressed, and sometimes I really wish I could take one, but there are also advantages to going without anti-depressants. You may have a clearer mind because of this. But of course you may be more miserable, so it's a hard battle.
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Old 05-14-2014, 09:22 AM #13
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It took me 3 years and 3 neurologists to get the right diagnosis, did they only do an MRI of the brain? It's not the only part that can have lesions.
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Old 05-14-2014, 05:31 PM #14
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Definitely put a call in to your neuro. It sounds like you need to be rechecked. I know migraines can cause neurological symptoms (and lesions) but I'm not sure about some of your symptoms.

Let us know how things are going.
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Old 05-15-2014, 06:47 AM #15
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Quote:
Originally Posted by Mariel View Post
It seems you are not being well informed about MS and its various manifestations. I read a few books on it from the library not too long after diagnosis. One of the valuable books was by Roy Swank MD. I can't remember whether his first comprehensive book was called "The MS Diet Book" or if that was the second one...I don't have the books because a forest fire in 2000 destroyed my library, which was filled with toxic smoke so that no one could even touch the books without gloves.

Dr. Swank not only recommends a diet for MS, but he explains WHY he recommends it, and what saturated fat does to exacerbate MS, in his opinion. He discusses MS as a worldwide phenomenon, where it is prominent, where not, and what periods of time made it less prominent (WWII when there was less fat in the diet, MS less prominent).
He describes how the damage is done to the myelin sheath.
You need to get a variety of reading materials, if your eyes will take this, and see the various effects and symptoms. If you can't read a book easily, there are books on tapes for many different subjects at the library.
It seems your Neuro is not the type who fills in the information so you can understand well. She does not think you need to understand in order for good care to occur, but you are having further symptoms which probably should be looked at, and they are not necessarily "just" due to depression. A person can be depressed about her condition and her life and still have physical manifestation.
I cannot take ANY anti-depressant because of having another ailment, Porphyria, in which some drugs cannot be taken.
I was told to just go out and live my life, symptoms and all, at your age. I muddled through, sometimes muddling well, but I would have done better with knowledge! Possibly much much better, and my relatives would have suffered less, too.

It is hard to live without a pill when one is depressed, and sometimes I really wish I could take one, but there are also advantages to going without anti-depressants. You may have a clearer mind because of this. But of course you may be more miserable, so it's a hard battle.
They've just released to the market a new anti-depressant that's natural and packed with a bunch of vitamins/minerals. It's called Enlyte. So far, it's been the best anti-depressant I've been on. It has B1, 2, 3, 6 and 12 in it. Along with a few folic acid like stuff in it. I will look into getting some books from the library and seeing if I can read them. I haven't been able to read books for a long time now. I don't know if it's my anxiety or what, but I just get too fidgety and have a constant need to do stuff with my hands.
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Old 05-15-2014, 06:48 AM #16
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It took me 3 years and 3 neurologists to get the right diagnosis, did they only do an MRI of the brain? It's not the only part that can have lesions.
Yes, only the brain. It was a 45 minute scan. Most of it without contrast and then they put contrast in toward the end of the scan.
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Old 05-15-2014, 10:07 AM #17
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Happy, as I recall from my MRI's that is they way the contrast is done. My first brain MRI was abnormal, I didn't see the report until after I ditched the first neuro though. He mistook the abnormalities for small strokes, even though the report clearly stated that " given the location a demyelinating disease is not entirely excluded ".

He did though order an MRI of my cervical spine, with and without contrast, which clearly showed lesions. He then decided on a lumbar pucture, and against my input said it didn't need to be done under a Floroscope, well he screwed that up trying for 45 minutes to do it in his office. After his failure to draw enough fluid for a proper test? He said I will have to send you over to the hospital for one under the scope. Wrong dude, you had your chance, the needle comes out and we part company. He had also refused to order an MRI of the Thoracic spine, if you are going to start down a path? Finish the walk?

The second neuro? He was part two of dumb and dumber, he sent me to the Cleveland Clinic for a Lumbar Puncture under the Floroscope, when I went to his office at the hospital to get the results? His nurse started wheeling me to have another! Stop the bus lady, I am here to get the results of the one done to weeks ago! He has on your chart you are to have an L/P! Wrong!

So then into his office, he had to call the Cleveland Clinic to have the results for a procedure he had ordered faxed over. The he gave me a dx of Transverse Myelitis, and was unable to answer questions about why my T/M didn't fit the pattern, and made the statement that no further testing was needed or necessary. That just provoked me to ask for a refferal to a real doctor, which seemed to shock him. He did comply and sent me to the Cleveland Clinic's Mellen MS center, and after the proper testing the real doctor there agreed with what I had been telling the clowns for a year and a half.

The first year and a half was spent trying to figure out why my Chronic Fatigue Syndrome dx didn't really seem to fit.

I hope you have better luck.
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Old 05-15-2014, 10:51 AM #18
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Sheese Sleeper, you sure wnt thru DX H ell!!!

I was lucky enough to have a top notch first Neuro.
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Old 05-15-2014, 06:23 PM #19
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LOL Sally, I viewed it as an educational experience.
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Old 05-15-2014, 10:22 PM #20
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It took me over 30 years from my first obvious symptoms to get a dx of MS. I was moving around and doing things (sometimes badly) for all that time, so I guess they thought it was "all in my head". Finally I got double vision and after some delay I got an MRI which showed myelin lesions, plus I had other tests like Visual Response, which was done easily in the office. I have no idea if I had lesions earlier. Later I got another dx, Porphyria, and about 50 % of doctors over the years thought I had Porph primarily, 50% thought I had MS primarily, and I think I have some sort of combo. This shows you how "grey" the area of thought may be about the "grey matter" in our heads.
Please try the books on tape or DVD if you are too fidgety to read.
As for the new anti-depressant, I will look it up, but I already know that too much B6 can be a challenge for the nervous system, often for "normal" people as well as people with neuro illnesses. I think more than 15 mg a day is too much unless you are taking it in the form called p5p, which is pre-metabolized. I am not sure 15 mg is too much for everyone, I'm just throwing that out as a sort of rule of thumb I've learned from various doctors and reading material, and harsh experience, over the years.
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