Possible MS?

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Possible MS?

Postby prediagnosedMS » Mon Feb 16, 2009 10:15 am

Hi I have just joined this forum and with everything thats going on, I'm really hoping that it helps!

So here's my story: Recently (1 week ago) I developed Anisocoria (unequal pupils) and my right one was not reacting, as a result I was unable to focus near objects i.e. difficulty with reading/looking at the computer. Investigation for that led to me getting an MRI that showed some demyelinating lesions in the white matter. I'm assuming most of you probably have been in that position and know what that means.

Currently, I am in the work up process for a possible diagnosis of MS. My doctors are following my symptoms and scans to eventually get more evidence to rule it in or out. From what I have read I understand that could take years.
I have joined this support group so I can meet people in a similiar situation, be more informed and learn what/if I can do anything during this prediagnosis phase.

I am told that Anisocoria is not a common symptom in MS, however it does not mean it cannot happen. I am curious if anyone else has experienced that also?

Also, I'd really appreciate any advise on what can be done in the pre diagnosis phase in terms of treatment/preventive options?

Feeling really disheartened and scared.
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Postby Bubba » Mon Feb 16, 2009 7:01 pm

I am disheartened and scared. I have a preliminary diagnosis of MS. This is my first week and I want to "do something" or learn something, but what? I am like a chicken running around with my head cut off. i have very slight paralysis on the left side of my face. One neurologist is convinced I have MS, the other doctors dont think so. So my question is "Now What"???? It will be another 4-5 days till the results of my spinal tap are in.... Meanwhile I am stressed!!!!
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Postby cheerleader » Mon Feb 16, 2009 7:33 pm

Dear Bubba and Pre...
So sorry to read your current situations. You have come to a good place for information and support. The period of time of "not knowing" is very stressful. The best thing to do now is to find physical and emotional support from family and friends. Keep doing your daily routines, try not to steep in worry. Cortisol (from stress) will just heighten your pain and anxiety.

Whether or not you get official diagnosis, everyone needs to learn how to manage stress better. Deep breathing, visualization, and (believe it or not), laughter (renting funny DVDs) will help how you feel. Also make sure to get enough sleep, and eat healthy...this means no fast food or processed foods. Stay away from alcohol and smoking. Look into the Best Bet and Swank diets. You can google them and get the breakdown.

Dietary supplements such as vit. D, omega 3 oil, zinc/magnesium/calcium, antioxidants, B12 can all help balance a system out of whack.

There will be time for answers to all your questions...now is the time to focus on your well-being and rally the troops. You'll have your answers....
best,
cheerleader
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Cheerleader offers good advice

Postby lyndacarol » Mon Feb 16, 2009 7:44 pm

In addition to Cheerleader's good advice and information:
Cortisol (from stress) will just heighten your pain and anxiety.

Let me add that elevated cortisol levels also cause an elevated insulin level (something we don't want!).
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Hi

Postby 71jules » Mon Feb 16, 2009 8:45 pm

Hi, Bubba and Pre... If you read my posts PLEASE HELP ME I AM SO SCARED and a couple of others, I am in the same position.
Not knowing but showing numerous symptoms and getting worse.
I have had blood work and am waiting on the MRI.
Unfortunatley no handbook for how to handle the wait.
I have been on this site for a couple of weeks and found it to be amazing, the support and kindness I have received has been uplifting.
It's good to know I am not feeling like the only one using the site that is not yet diagnosed. I felt a bit bad for whinging when I haven't got a diangnosis yet. Though I have never been made to feel that way, quite the opposite.
Glad I found this site and I highly rec it to anyone feeling the need to express any concern they have with MS.

Thanks again to everyone on thisisms.

Keep smiling.

Jules :D
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Postby jimmylegs » Tue Feb 17, 2009 5:43 am

hey there folks sorry you're having a rough time. i don't know how i lucked out but it was kind of a whirlwind diagnosis for me and STILL the waiting was agony so i really feel for you guys.

cheer has wise advice to get you started on action for the right now.

if your symptoms are eye related i wonder whether you're getting enough protein, vitamin A, zinc, and b-complex (B1/thiamin in particular). you can look into which if any of those might be low in your diet, or depleted for some lifestyle reason (for instance some prescriptions drain certain nutrients etc), and take action as appropriate.

a b-50 complex will help you combat stress while you wait for news.

if you're on the hook for possible ms, they need to check the following, in descending order of importance

b12 (with b6, subclinical b12 deficiency affects cognitive function and stress levels before any neuropathy shows up - the lab results will come back "normal" right down to 200pmol/L but you can aim to keep it above 500 for better cognitive function)
d3 (ppl with the lowest risk of ms have levels 100nmol/L or higher. probably a lot of docs will still say you're okay down to somewhere in the 70s or lower, so make sure you know the results yourself).
zinc (the normal range is 11.5-18.5 μmol/L, optimal is 18. most folks with ms are lower than that you can search here for the topic ms, zinc, boys, girls, controls to read more)
uric acid (this one is a neat indicator of your body's natural antioxidant status. the normal range is something like 140-340, they'll tell you you're fine anywhere in that range but in fact the ms average is 190 and healthy controls are 290. i'm working on figuring what link if any there is between zinc intake and uric acid status. anyway if you are interested i wrote up a little ms blurb on the uric acid page of wikipedia http://en.wikipedia.org/wiki/Uric_acid)

once you have baseline numbers for these you can set up a plan to address any probs that turn up.

hope that gives you a better sense of control over the right now! you can start supplementing and making diet mods any time you like - and it's still good to get a couple of tests and followup tests to make sure you don't overdo anything. if you need more details just say :)

JL
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby Bubba » Tue Feb 17, 2009 7:45 pm

As far as diet goes, i started one before my possible diagnosis. I turned 41 three weeks before the first symptoms. I decided at 41 that I was going to start taking care of myself. I had been chewing tobacco for 25 years, i quit that. That was the most difficult thing I have ever done in my life! Next, i started a high protien, lowcarb diet and started exersizing. Things were going good, now I have a "speed bump" in my road but I will get over it. Still waiting on the LP results....
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Postby cheerleader » Wed Feb 18, 2009 9:03 pm

Bubba...
you may think this is crazy, but stopping the tobacco after all those years may be what is causing your current symptoms. It could be nicotine withdrawal. NOT that you should start again, but make sure you tell your doc about your new regimen. Decreased heart rate, decreased blood pressure, insomnia, dizziness, fatigue, depression, numbness, tingling, can all result from the new level of oxygen and lack of nicotine in your blood and last for several weeks after quitting. Especially if you've been chewing for most of your adult life!
You did the right thing by quitting...but your body chemistry needs to readjust. I know about this because my brother went thru it.
Hope this helps!
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Bubba » Thu Feb 19, 2009 7:10 am

Thanks and Good Looking out Cheer! I did mention that o one of the docs while I was in the hospital for four days being tested for different things. HOPEFULLY my test results will be back tomorrow! I will keep ya'll updated! One more thing...... Thank God for this Forum!
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