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Newly Diagnosed and confused

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Old 01-03-2011, 07:12 PM   #1
Join Date: Jan 2011
Location: Blacksburg, VA
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AFMom77 HB User
Newly Diagnosed and confused

Hi everyone, So I was diagnosed 3 weeks ago based on 3 separate deficits and lesions on MRI (13 of them). I felt that diagnosing based on those was jumping the gun so I asked for more tests. Today I had the ocular evoked potential, the tech said it looked normal to her, though I get results in a few days. Tomorrow I go for an MRI of neck. I guess I'm confused because currently I feel fine and the lesions on my brain were many but not peri-ventricular as is the usual pattern, coupled with a normal evoked potential...I'm thinking maybe the lesions are just sort of there. I am young and otherwise very healthy and in pretty good shape (for having a baby 6 months ago). I am most concerned with getting an acurate diagnosis b/c I am in the Military and MS means I would have to leave, I love the Military and so this is heartbreaking for me. I would hate to go through all these treatments and give up a career over a "possible" disease. Has anyone decided to forego treatment and take a watch and wait aproach? HAs anyone still been diagnosed with MS even though they had a normal evoked potential? I apologoze for the length of my post, I'm just a bit scared of all this, I feel like if I ignore it, it might go away.

Thanks for any advice you may have

Last edited by AFMom77; 01-03-2011 at 07:13 PM.

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Old 01-03-2011, 07:22 PM   #2
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Re: Newly Diagnosed and confused

HI AFmom.
Congrats on your decision to go into the miliatary. You should be proud of yourself! As for how MS affects that, I wouldnt know..

I can tell you that 13 lesions, is a fairly sure indicator of MS- and having a normal evoked potential means very little. I have normal evoked potentials and normal Lumbar Punctures, but because of my symptoms and lesions, which are ONLY on my brain, not on my spine, I have been given a positive MS dx.

It hasnt changed my life. I do give myself injections; but I also work 50 hours a week, go to grad school, doing my PhD, and volunteer with my local chapter 25 hours a month. I have a family, 3 kids and a very needy husband. I call myself a type friends call my crazy! I feel that staying on my Rebif, has made all the difference in the world. Not everyone decides to go on Disease Modifying Drugs and its a very personal decision to do so. Statistics state that by going on one, sooner- rather then later- can ward off disability, keep new lesions from developing, and help prevent further symtoms. I am positive, that in my case, this is true......but its statistics, not an exact science- not everyone has the good fortune which I have to be as stable as I have been for 4 years.

Could you try to ignore this for some time and see what happens? Absolutely. MS is a very individualized disease...for some, they have one episode and nothing ever happens again; however the biger question would be how long have you had those 13 lesions? Thats quite a few in the grand scheme of things, it only takes 2 or 3 to get a diagnosis...if you have had them for a very long time, chances are you have a slow moving disease; however if you just developed them over the past year or two....your chances of developing more are much higher...with that, your chances of having problems in the future exist.

You should take a look at the McDonald Criteria, which is what is used to dx MS ....there is a revised McDonald Criteria and an old one..look at the newer one. It will help you realize that what you describe is significant, and not jumping the gun at all....however, its your choice to do something about it, or take the wait and see approach. If you were to talk to 100 people, you would get 100 have to do what is right for you. BUt I would caution you, if you asked 100 people how many had more then 10 lesions, the number would drop significantly. BY the way, i have 50+....its placement of where they are, not number, that defines the disease. Mine are not in the normal placement pattern either.

Let us know what you decide...and the very best to you.
RRMS- dx 05

Old 01-03-2011, 10:56 PM   #3
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Re: Newly Diagnosed and confused

Welcome. I was in the USMC in 1982 when MS was diagnosed. They allowed me to stay on for 2 years to make sure I had MS. I was on inactive duty. The Uniform Code for the Military lists MS as incompatible for military service. I had to give up my flight school career, but there is a life with MS.

You might want to check your status as well as follow-on care. If you can get treated via the VA, your life will be better as the VA does a better job with covering rehabilitation equipment and assisted living technology than Medicare.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

Old 01-03-2011, 11:10 PM   #4
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Re: Newly Diagnosed and confused

Hi AFmom, I was diagnosed with a first episode of MS, called a clinically isolated syndrome. When I have another episode based on symptoms, or when more lesions appear, I will have the formal diagnosis of MS. I was found with three of them in my brain and my spine is clear. Vertigo sent me on my way to explore what was going on? What are your symptoms that made you go to the dr. initially? I could have taken the wait and see approach, esp. since I am not even formally diagnosed yet but I opted to start treatment in May of 2010. It's been about one year since my vertigo happened. I figured that the daily shots are a small price to pay to help ward off the progression of the disease. My husband is skeptical that I even have it and says he would probably go off treatment, if it was him, if the next mri came out clean. I am not willing to do that-- it's an insurance policy in my opinion- we will never know if it's the treatment helping or the disease not manifesting but why take the chance. That's my opinion and Iam a newbie. Btw, I am also a professional like Niki, two small children, work full time, and very high energy. You would never know I had anything. Thank you for your service.

Old 01-04-2011, 05:38 AM   #5
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Re: Newly Diagnosed and confused

Please get yourself checked for Coeliac disease, B12 deficiency, Lyme disease, Antiphospholipid syndrome (aka Hughes) as sometimes these conditions can mimic MS. There are a few more (look up differentials for MS) so before totally confirming you have MS its worth looking at the other conditions that can cause lesions/similar symptoms x

The other thing I will say is, I have not had any real benefits from getting an official diagnosis. I do not take the MS meds but I was able to get hold of LDN (which is not a recognised MS drug but seems to help me) If you have a relapse it is comforting to know that you can ask a neuro for steroids but they don't actually improve the outcome of the relapse but quicken the healing process so I have chosen not to take them. (thats my personal choice, if I had a big nasty relapse though I might change my mind)

I don't eat dairy/wheat/too many saturated fats and this coupled with a zinc supp 25mg daily, Vit D3 5000 iu, Folic Acid 400iu, Nattokinase 200mg, Q10 200mg, aspirin 75mg and choline/inositol 250/250 combo I seem to have managed to stay relapse free since April (I had a couple of relapses in the last 2 years though before I was taking all these supps. I had a vertigo relapse after an osteopath cracked my neck and I had a vision relapse (mild) after the flu)
Other than that I feel well and you wouldn't know I had MS thankfully. I do have episodes of fatigue and sometimes I have brain fog (like when you are too tired to think and words come out wrong) but I have had MS for 14 years so the occasional episode here or there is no biggie I am very grateful that I have not been more severely affected.

Old 01-04-2011, 02:23 PM   #6
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Re: Newly Diagnosed and confused

Originally Posted by AFMom77 View Post
Has anyone decided to forego treatment and take a watch and wait aproach? HAs anyone still been diagnosed with MS even though they had a normal evoked potential?
I have been diagnosed for almost 26 years and have never used any of the MS treatments.

My Visual Evoked Potential was inconclusive.

The VA has a MS center and their website has a wealth of information about the disease.

As part of the diagnositic process your Neurologist should be ruling out other causes through testing which includes quite a bit of bloodwork. MS has always been and still is a clinical diagnosis.
Dx RRMS 1985
5/9/13/ Secondary Progressive without Progression

Old 04-07-2011, 10:33 AM   #7
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Re: Newly Diagnosed and confused

HI! i have been having symptoms and i am afraid it is MS. it started out as a very quick onset of numbness and tingling in the right side of my body. my right eye felt as if it was droopy but it wasnt. those symptoms lasted for 4-5 days and now i am just weak on the right side of my body and my right eye is somewhat blurry. I have been a little nausous and no appetite. Im really scared that it is MS. i have a 3 yr old and a 11month old and a husband. we are about to buy a house for the first time and im just so scared i wont be able to play with my girls and be the wife i want to be to my husband if i have it.

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