216281 tn?1189759426
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Why is it that I am not receiving responses to my posts?????? Just curious. Maybe I should look elsewhere for advice and help. Don't want to put any one out!!!
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228463 tn?1216765121
Don't take it personally.  I did not respond because I do not have a diagnosis yet and felt like I am not at all an expert on any of this yet.  Sorry you felt put off but I am sure it was not intentional.  

Anyways, I don't understand why you were dx'd but not treated 11 years ago?  How many exacerbations have you had since then?  
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228463 tn?1216765121
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216281 tn?1189759426
Several. Fortunately,  I have not had numbness in my legs and it has not impaired my walking. Until recently. I am beginning to have extreme weakness and tingling in my legs on exertion and incontinence problems. My vision is also deteriorating rapidly. I am scheduled for VEP early next month. My main symptoms have been with fatigue, which is the worst, and my vision. I have also been recently Dx'd with a moderate hearing loss. No one is sure if it is MS related or not. I have been hoarse for 2 months. I am frustrated as heck, to say the least. I just want some help. I can't get it anywhere!!!!
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216281 tn?1189759426
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220917 tn?1309788081
Hello, SUGAR!

I'm sorry you feel like we're not responding.  Did you get my response?  I answered you, as others did and we did not hear from you for a long time.  Sometimes if you respond too long in a thread, it gets lost.  These forums can be tricky that way.  Any oversight was not intentional, I assure you.

We don't want anyone here to feel unimportant.  Stay here.  I see after looking back in the older thread that you responded to Quix's questions.  Perhaps she can look back and give it a fresh look.  If that doesn't happen, post again.  It has happened to me.  I have gotten lost at the end of a thread, sort of poured my heart out, and discovered that I need to start over again with a new post.  

Again, I'm so sorry that happened.  It shouldn't have.  We try to be a community for each other.  You have real problems.  You're not getting help from your health care providers.  That's a problem a lot of us face.  We need to support each other.  Stick with us, Sugar.

Hang in there in Ashland (What state?)

Chris*
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220917 tn?1309788081
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Avatar universal
Usually the CCF is pretty good.Do you go to the clinic or mellon institute?

I have sensorineural hearing loss both ears worse on the the right.I have brain stem lesions.

Get copies of all your test results,read them yourself,keep a journal of your symptoms.

I have talked to many with MS and it has taken some 20 years to get a Dx.Look at Terri Garr 20 years.Montel williams 22 Drs.Heck these people are stars and have the financial resources and still I got jacked around by the medical community.

Today neuro's use the McDonalds criteria for scoring MS,if you don't fall into that scale you are basically you know what.A few neuro's still use the poser.

It took me a heck a lot of testing and one good neuro to DX me.

A demyelinating disorder,humm that sure leaves a vague diagnosis.I'd honkin walk back into that neuro's office and ask him after 11 years what and where does this leave you.

With all your symptoms and many increasing I'd be pushing for test ,answers ,something.It is frustrating,I've been there.

If ya have to switch neurologist.Hang in there.
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216281 tn?1189759426
Thanks for responding!!! I was under the impression that I would get an email or something if I got a response. I can't remeber to check!!!....LOL I do go to the Mellen Center and I do live in Ohio, it is an hour drive. As a matter of fact I have a urologist appointment there tomorrow. A urodynamic study and a cystoscopy, YUK!!! Hope fully testing will shed some new light on things. Please keep me in your thoughts.

Thanks Again for responding!!! I appreciate all the help and advice I can get!!!
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216281 tn?1189759426
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216281 tn?1189759426
I just recently requested copies of my records. I pretty much told my neuro, either treat me or refer me to someone that will!!! Enough is enough!!! I am having several tests done in the upcoming weeks. Maybe our little conversation stirred up somethings????
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The MS specialist I seen their was great.I see a local neuro now.The clinic is about 2 and half hours from my house.I go right through Ashland.My son likes the store  fins,furs and feathers.

Good for you I'm glad you stood up for yourself .

Good luck with your study and I'll keep in my thoughts and prayers.
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Hi how are you? How is your hapitatis B doing? I am a 25 year old female currently taking viread medication for 6months now, I have received some side effected from the medicine that is why I am here to do some research and want to know more information and than I saw your posted, it's make me happy to see I am not alone can I ask how is your treatment doing now ? Which medication did you take viread or baraclude ? How much is your viral load now ? It has been 2 years already since your last posted I hope you will check this post or anyone else know more information about hapitatis B plz give me some advice on how to take care this diease , I am looking forward to hear from u as soon as possible thank u in adavance...  
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