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Old 07-17-2012, 09:13 AM #1
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most folks with diabetes have high blood sugars. are yours raised? Peripheral neuropathy can be so painful, but it can come with so many conditions. MG, MS, Lupus, lyme...the list goes on and on.

From the tone of your post (dear god its hard to tell intent, tone and humor in posts) it appears as if you think he wasnt listening, and maybe was a bit dismissive. If this is the case RUN to the next neuro. I saw one neuro who said "youre too old to have MS" I said "not if I have had it for years and no one caught it!" He didnt have an answer for that. He went on to say "still dont think you have it." went to the MS center who said "oh yeah! you have MS" They felt it so strongly I got to skip the spinal tap. So, if you are not syncing with this one, get a new one.

YES! we frequently have multiple issues. I have a brain tumor, sjoghrens, arthritis, and migraines. It seems that if you have one auto immune disorder your body tends to allow others in the door more easily.

Best advice is to clean up your diet (i have no idea what you eat now) but to clean out the processed foods, over salted, over manipulated stuff, and try to get wiggling. Even if its chair exercises. It helps burn off that cortisol that comes from having a stressful disease. Whether that is MS or diabetes or porphyritic stuff. (thought of you mariel)

Do you think you want to see another neuro? or were you happy with the answers this one gave you? Many of us go thru several before we find someone to listen to what we are saying. you say "my feet are burning!" they say "wear lighter socks!" you say "im off balance" they say "get up slower" its like...DUDE! thats not an answer its dismissive!
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Old 07-17-2012, 09:30 AM #2
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Your Neuro sounds pretty sure you don't have MS or even a Neurological disease. If you are not buying his DX or lack of a DX, then your best best is to get a second opinion, preferably at a MS clinic.

I hope you find answers soon and please keep us posted. We care..
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Old 07-17-2012, 10:31 AM #3
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Quote:
Originally Posted by SallyC View Post
Your Neuro sounds pretty sure you don't have MS or even a Neurological disease. If you are not buying his DX or lack of a DX, then your best best is to get a second opinion, preferably at a MS clinic.

I hope you find answers soon and please keep us posted. We care..
That was the MS clinic but he didn't give me a chance to speak to tell him what is going on with me. I wrote all my symptoms down because someone on the forum advise it to someone. I never got to read any of it I never got to show him the videos of my tremors or twitches he just said I don't see them today so I can not say they are hear. my old neuro at least looked at the videos.

He just seem like the big time dr that was showing his students that on paper there was nothing so there is nothing and that I past his in the office neuro test so that is that. I am letting him get the mri for my lumbar and see what he comes up with.

Oh and I just remembered I don't have another appt with him until NOV oh and he told me to go back to my old neuro

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Old 07-17-2012, 01:43 PM #4
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So, let me get this straight. You have brain lesions and O Bands in your spinal fluid and this guy is straight out dismissing MS as a possible dx? If that is the case, find a new doc - one who listens and can speak English clearly. Bizarre!
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Old 07-17-2012, 02:03 PM #5
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Ouch!!!! Sounds like this guy just doesn't want to be bothered pursuing a diagnosis. I agree with Holly and the others............find a new neuro!
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Old 07-17-2012, 03:24 PM #6
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QUOTE: "Oh and I just remembered I don't have another appt with him until NOV oh and he told me to go back to my old neuro"

Hello Shadiyah,

It really does sound like he does not want you as a patient. It might be best to take his advice and go back to your old neuro or find another one. Your test results and symptoms should not be ignored but rather should be taken very seriously...and hopefully with some genuine concern and compassion.

Sometimes these super specialized neuros are into research and they are picking and choosing their patients so that they can put them into their research program (drugs). They really get ticked if you don't take the meds that they recommend. I had that experience once. He seemed like a really nice and caring person, and had all the time in the world during the first visit. On the second visit he had some results (similar to yours), and said that he wanted me on a particular medication protocol that included steroids. When I said that I couldn't take that due to enteritis and liver compromise, he said pretty much the same thing that yours did. "Well, then I suggest that you deal with your family physician to control symptoms as there is nothing that I can do for you."

Most importantly don't give up. There are still compassionate, genuine and knowledgeable neuros out there. Keep looking and never doubt yourself or that your symptoms are very real. It does seem that we sometimes need to prove to physicians and others that there are impairments. That is just the way that it is because many of our symptoms do no show. Hang in there and look after yourself as best you can. Cut back on that chocolate, OK?

With love, Erika
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Old 07-18-2012, 12:19 AM #7
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thank you all for all the love. I will keep you posted.
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Old 07-17-2012, 03:13 PM #8
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Quote:
Originally Posted by hollym View Post
So, let me get this straight. You have brain lesions and O Bands in your spinal fluid and this guy is straight out dismissing MS as a possible dx? If that is the case, find a new doc - one who listens and can speak English clearly. Bizarre!
yes old lesions and 3 bands and he said no to ms and I asked him but what about the bands??? he said there are so many things that is wrong with you with my disc it could be the cause I don't know.
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Old 07-17-2012, 03:16 PM #9
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ok so I made an appt at the old office with the new neuro that came because all my records and test are there to see what he is going to say. I am doing this because we are thinking about moving back to atlanta ga and I will have to go through this all over again next yr so I will just stay there for now on. at least that office know who I am and really think something is wrong with me. plus they have seen most of the symptoms.
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Old 07-17-2012, 10:22 AM #10
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Quote:
Originally Posted by Dejibo View Post
most folks with diabetes have high blood sugars. are yours raised? Peripheral neuropathy can be so painful, but it can come with so many conditions. MG, MS, Lupus, lyme...the list goes on and on.

From the tone of your post (dear god its hard to tell intent, tone and humor in posts) it appears as if you think he wasnt listening, and maybe was a bit dismissive. If this is the case RUN to the next neuro. I saw one neuro who said "youre too old to have MS" I said "not if I have had it for years and no one caught it!" He didnt have an answer for that. He went on to say "still dont think you have it." went to the MS center who said "oh yeah! you have MS" They felt it so strongly I got to skip the spinal tap. So, if you are not syncing with this one, get a new one.

YES! we frequently have multiple issues. I have a brain tumor, sjoghrens, arthritis, and migraines. It seems that if you have one auto immune disorder your body tends to allow others in the door more easily.

Best advice is to clean up your diet (i have no idea what you eat now) but to clean out the processed foods, over salted, over manipulated stuff, and try to get wiggling. Even if its chair exercises. It helps burn off that cortisol that comes from having a stressful disease. Whether that is MS or diabetes or porphyritic stuff. (thought of you mariel)

Do you think you want to see another neuro? or were you happy with the answers this one gave you? Many of us go thru several before we find someone to listen to what we are saying. you say "my feet are burning!" they say "wear lighter socks!" you say "im off balance" they say "get up slower" its like...DUDE! thats not an answer its dismissive!

He acknowledge that I have lesions, he acknowledge that 3 bands exist in my spinal fluid and he seen that all test for other diseases came back neg. He told me all in bold and it was hard to understand him because of his accent. So then he started braking things down in my body and saying my lower back degenerative disc disease could be worst than what we think so he wants mri for that. He wants my primary to check my heart to make sure the lesions were not cause by inflammation of the blood vessels. Then he didn't have anything really for the 3 bands in the spinal fluid except that with all that I have going on who knows. I am border line diabetic and I have high cholesterol. I eat a lot of chocolate and I mean a lot. So I know I have to change my eating habits for sure and I was working on that right now before I went to see him. But in the mean time my fingers keep cramps and stiff and the fatigue in my upper arms he could not explain that because he told me my neck disc were not that bad to cause that.
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