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Old 02-17-2010, 01:10 PM #781
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I do have a definite diagnosis of RRMS.......
how often are they wrong?
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Old 02-17-2010, 11:21 PM #782
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Quote:
Originally Posted by RelyonHim View Post
I do have a definite diagnosis of RRMS.......
how often are they wrong?

Sometimes, especially if the come up with a DX, before all other diseases/causes are eliminated.

Has your Doc recommended any Meds yet?
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Old 02-18-2010, 06:14 AM #783
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Quote:
Originally Posted by SallyC View Post
Sometimes, especially if the come up with a DX, before all other diseases/causes are eliminated.

Has your Doc recommended any Meds yet?
He gave me the info for ABC-R....but I am leaning toward LDN only. I have read a lot about each, and I just do not feel comfortable with the first four. LDN just makes sense to me. I do question my dx and will be getting a second opinion in March. My doctor is good and open to LDN...he is a general neurologist so i will be seeing a MS specialist at a comprehensive MS clinic in March.

I have a great deal of the symptoms.....but also have other medical issues that could account for some of them.

I have neck/back/shld pain with numbness and tingling into my arms and legs, very cramp/achy legs and an abnormal SSEP......but I do have two herniated discs

I have frequency and leaking urine......but I have 5 children

I had a few white matter lesions.....but I have a history of severe migraines, which can cause similar lesions

I have low B12 (not extremely low 308) which can mimic MS symptoms, including extreme fatigue.

Do you see what I mean.....I am in the medical field and I know that makes me a very bad patient and I question everything....because after all it is
Practicing Medicine

Maybe it is just denial....I haven't told me mom or siblings....want to wait for the second opinion, so maybe I won't have to tell them at all.

Thanks for listening,
Sharon
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Old 02-18-2010, 11:07 AM #784
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Nothing wrong with a little healthy denial.

Come on in and join us in the rest of our home, pull up a pillow and make yourself comfy..
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Old 02-19-2010, 08:00 AM #785
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There is nothing wrong in waiting to start DMD (disease modifying drugs) if you are actively persuing a 2nd opinion. I had one neuro tell me that it was perfectly acceptable to chose NO meds if that is what I wanted to do. He warned me that once you start, they tend to not want you to stop. They will switch you to another one, if you have issues, but rarely will they let you put down the needle once you pick it up.

Welcome to the club house. Sorry you need to be here.
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Old 02-19-2010, 05:47 PM #786
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Quote:
Originally Posted by RelyonHim View Post
He gave me the info for ABC-R....but I am leaning toward LDN only. I have read a lot about each, and I just do not feel comfortable with the first four. LDN just makes sense to me. I do question my dx and will be getting a second opinion in March. My doctor is good and open to LDN...he is a general neurologist so i will be seeing a MS specialist at a comprehensive MS clinic in March.

Sharon
even without a DX, LDN is a good choice
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Old 02-26-2010, 11:57 AM #787
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I'm hoping to find relief and maybe some sympathy for my Trigeminal Neuralgia pain and the ups and downs with the variety of meds the docs like to throw at me.

Every time I think my TN pain is under control ... it isn't. I'm frustrated with my body. The tegretol at full dose makes me so tired that I cannot finish the day at work but the pain is ALL gone. I ratchet back the tegretol and I am fully functional but the pain it there.

Enough of my ranting. After reading so many posts here, I am ashamed of my whining.
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Old 02-26-2010, 12:48 PM #788
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Hi NanaBug

not sure if you also have MS as this is the MS forum

we also have a forum for trigeminal neuralgia here http://neurotalk.psychcentral.com/forum26.html

and the main community new member intros is here
http://neurotalk.psychcentral.com/forum88.html

if you also have MS, then you are in the right place
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Old 02-26-2010, 01:09 PM #789
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Welcome, Nana, to NeuroTalk. Nice to meet you. I'm sorry about your TN. ..Is that with or w/o MS? They sometimes go together.

I hope you get the right Med combo that helps only you, as not all meds work for all people. I believe there are certain meds with your name on them, though....you just have to try them to find them.

Glad to have you here.
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Old 02-26-2010, 02:05 PM #790
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Hi folks, Wanted to say hi with a new login name. I was on the Braintalk communities back in the day, but not only forgotten that handle, i've had several email addresses since then.

DX'd for 15 years and spent 10 years on Avonex with good results. This past fall, the pressure in my job increased tremendously and I have been dealing with the fallout from two exacerbations, in Oct and Dec.

Doc wanted me on Tysabri, and I had infusion #1 last week, but not before some of the progress I'd made since December slipped away. My energy is good, strength is decent, but my sense of balance seems to come and go (mostly go). Not sure what's in the future, but I'm keeping Dr. in the loop and he'll bring me back in if this doesn't clear up in short order.

Thanks -- Susan
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