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Unread 10-22-2012, 10:34 AM   #11
Debbie D
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Welcome to NT...it's a great place for all of us to share, cry, vent, laugh and just try to get on with daily life.

NurseNancy gave you the right advice-don't say anything at work yet!! Keep a symptom journal and a list of questions for your neuro, and try to bring someone with you. The info can be overwhelming and you might forget what he/she says. Or take a recording device.

This disease is such an individual disease-treats everyone special none of us has exactly the same symptoms, or degree of advancement. All I can say is take in information with moderation; try not to become obsessed about it. Just note what's going on and live your life-cause you only have this moment...

I have never heard of a diet that cures MS, just can lessen the symptomology and progression. There is a lecture on youtube about "minding your mitochondria" that touts massive amounts of kale. Haven't had the courage to eat it yet
The Swank diet has been around for a few decades, I think. It's pretty strict, but has it's fans.
I believe in a diet of moderation, exercise, rest, and trying to stay active. Occasionally I will have a pity party, but when I realize I'm the only participant, I close it down and get on with life.

Keep us up to date please. Make sure you feel comfortable with your doctor. I've been through three and now am so happy with my neuro-it makes a difference if you feel listened to!!

and the last bit of advice-you are not alone in this...we're here, we're soldiers in this fight, right along side of you...
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Unread 10-23-2012, 01:48 AM   #12
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Hi Olive,

I'm so sorry that you have to deal with this and that we have to welcome you to the forum. I think you will find this place a life saver. People are gracious and kind and have lots of great information. Never be afraid to ask a question

I can only repeat what many others have said. Everyone's course of MS is different so the best thing you can do for yourself (and maybe the hardest) is not to compare yourself to other people. The number of lesions you have does not necessarily correlate with how mild or bad your MS is or will be. In other words, you can have TONS of lesions on your brain and few to no symptoms or just one visible lesion and many problems.

So I can only give you some hope that there are people out there with mild MS. I also got optic neuritis in one eye as my first symptom. So far I have not had a relapse since diagnosis (I have been on Tysabri for about 4+ years). I walk normally (my balance can be a little bit off but no one notices except when I get bruises!). I can exercise at the gym. I can stay up really late. I can go out with my friends. I can drink alcohol. I can do many things. And I still work full time.

The only thing that slows me down is the heat -- one thing that many MS patients have in common is an intolerance to hot weather, hot showers, hot tubs etc. I get really fatigued and my brain gets foggy and slow when the temperature is high (like 90 degrees or hotter)--my vision gets a little blurry too. But if I get out of the heat and stay cool all of that disappears.

I really understand your fears about being able to continue in a job that requires high intellectual ability and performance. I'm not sure what you do for work but I was deathly afraid I would lose all cognitive function and not be able to do my job. That is still probably my worst anxiety about this disease. I'm a professor, and have published books and articles and given lectures presenting my research in front of large crowds of people. So my work is really my brain and my brain is my work. I need to have sharp faculties to speak in public, teach, and especially to write. So far (knock on wood) I have not been terribly slowed down by any physical symptoms of MS, only by emotional adjustment like anxiety!!

Things like diet, exercise, and therapy can make a difference but they are not cure-alls. It's just a matter of figuring out what helps you feel better. That might take awhile. In the meantime, try not to panic or beat yourself up.

Please keep us posted.
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Unread 10-23-2012, 11:53 AM   #13
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First of all......do not get paranoid!!
I say that with love as I got very paranoid after my diagnosis because my Neuro specifically stated that I had a lesion in the cognitive part of my brain and that concerned her.
With that thought in the back of my head, I started questioning every lapse in thought I had and worried endlessly that I was "losing it".

When I went through a bout of fatigue, my doc put me on Provigil (a Ritalin type drug). It woke me up and put my brain on rapid fire! I mean I was processing info like an IBM computer! So I think that tells me I am okay.....if my cognitive was broke it would have remained broke even on the Provigil....
Now fast forward about 11 years.....I questioned my new Neuro about the lesions in the cognitive part of my brain. His response, "the entire brain is cognitive!...." He knew what I meant but his response made me laugh.

I still walk, talk and can rub my belly and pat my head at the same time. I have days I feel like I have MY M.S. and days I forget I have M.S.......but that is me. For the little things that pop up, I have actually gotten used to them and work around them. I medicate when necessary and go on with life. Unfortunately you are at the scary "what if" part of YOUR process. The longer time goes by you will come to terms with YOUR M.S., and what it stands for in YOUR LIFE. Yes, there will come a day when you even stop telling people you have it. (When I was first diagnosed I told everyone out of sheer shock).
Please hang in there until you get all your answers and know that this is not the end of the world and don't let all the "'well do'ers" tell you horror stories about the John Doe they know that has M.S. and how he is just a head on a pillow.....YIKES. Let that stuff go.
Your job is to stay positive. If you get too freaked out, do what I did and see a councilor. That really helped me put my thoughts together.
Big Hugs Big Hugs Big Hugs
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Unread 10-24-2012, 06:31 AM   #14
Lynn
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Hello Karilann

I was trying to post a 'thanks' on your reply- because I thought it was a great and really positive one.

For whatever reason, the forum wouldn't let me do it, so here it is - thank you - great post!

Lyn
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Unread 10-28-2012, 01:05 PM   #15
olive1976
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Hi All,

Thank you for all the supportive messages. I'm still waiting for an appointment with the neurologist, and hopefully will know more once I've seen him.

Out of curiousity, has anyone else here experienced numbness and tingling in all four limbs that's gone on for months and months?

Cheers,

Olive
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Unread 10-28-2012, 01:54 PM   #16
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Quote:
Originally Posted by olive1976 View Post
Hi All,

Thank you for all the supportive messages. I'm still waiting for an appointment with the neurologist, and hopefully will know more once I've seen him.

Out of curiousity, has anyone else here experienced numbness and tingling in all four limbs that's gone on for months and months?

Cheers,

Olive
Hi and welcome to NT, Olive.

Yes, I've got lots of numbness and it continues to progress. Its possible it could be due to something else, but I don't give it much thought anymore. As they say: It is what it is.

Best wishes to you -- come back and give us a report.
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Unread 10-29-2012, 02:43 PM   #17
Debbie D
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Gosh, I've had "sock toes" (feels like I have wool socks on) for over 7 years. Only diminished a little this past summer...
tingling comes and goes...I just have learned to write it in my symptom journal with dates of onset/remission and move on...

I didn't before being dxd, however...I would constantly think and worry about every symptom and whether or not it was part of what I thought was MS. Now, after several years, I have learned to try to ignore things unless they really bother me.
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Unread 11-14-2012, 05:29 AM   #18
olive1976
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Default Appt with Neuro, but not until January

Hi All,

I finally have an appointment with the neurologist, but not until January. I wish it was sooner because if I do have MS, I'd like to get on medication as soon as possible to lower the risk of attacks. Is it a concern that I have to wait two months for a first appointment with a neuro?

Cheers,

O.
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Unread 11-14-2012, 07:51 AM   #19
Lynn
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In my humble opinion, in terms of your sanity, and your peace of mind, the time lag is significant. But realistically, it probably isn't in so important in the grand scheme of things.

This of course all changes, if you have any changes - such as new symptoms or an exacerbation and your disease process is active.

I wish you all the very best - keep a diary of events and symptoms and if anything does change or happen, make sure you call your doctor's office and let them know.

Regards

Lyn
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Unread 11-14-2012, 12:20 PM   #20
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Quote:
Originally Posted by olive1976 View Post
Hi All,

I finally have an appointment with the neurologist, but not until January. I wish it was sooner because if I do have MS, I'd like to get on medication as soon as possible to lower the risk of attacks. Is it a concern that I have to wait two months for a first appointment with a neuro?
It depends on your Neuro Olive. Some say ASAP for meds, others say wait and see?? I don't think 2 months is too long to wait, unless you are in the middle of a heavy hitter attack of it. Then I would go to the ER and let the ER Neuro see you.
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