I was diagnosed on Thursday, in hospital now, have many ???

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

I was diagnosed on Thursday, in hospital now, have many ???

Postby Bkank829 » Sat Jun 29, 2013 6:39 pm

Hello! I am so sorry for the length of this post. I am a scared mom of a special-needs child and I was diagnosed with MS 3 days ago.

I am a 38 year-old female who has up until now been healthy. A few months ago, I woke up one Monday morning with a numb right leg. I didn't lose any strength, it was just numb. I saw my primary on Friday. He got me in for a spinal MRI and a bunch of blood work that day. My MRI was normal as was my blood work. I did lots of back stretches over the weekend and by Monday I was fine.

I have a 10-year old daughter with spastic quadriplegic cerebral palsy. She depends on us for everything so I attributed the leg temporary leg numbness to lifting 60 lbs of dead weight multiple times a day and forgot about it.

Three weeks ago, my husband and I placed some new mulch in our yard. It was the first time we had ever used dyed mulch and by evening, my throat was swollen and I couldn't talk. I got my voice back in A few days but by then had developed a sinus infection. After a week of coughing all night I went to a minute clinic where I was given Augmentin for the first time ever. That was on Sunday, 2 weeks ago. I started to feel better but on Thursday of the following week, the vision in my right eye was cloudy and I had pain when I moved it. I attributed it to my sinus infection but went to my health system's urgent care on Saturday to have them look at it. They gave me more Augmentin as well as a steroid shot and sent me on my way. That was a week ago.

On Tuesday of this week, I decided I had better get it checked out, went to my primary and he sent me to an ophthalmologist, who prescribed optic neuritis. I had a brain MRI on Wednesday and saw a neurologist on Thursday. He diagnosed me as having MS. He said I had lesions on my brain but didn't tell me how many. He admitted me to the hospital yesterday where I had another MRI and a spinal tap. I'm also receiving IV steroids. Through out the week I had started having a little tingling in my right foot but it's gone now. I'm getting IV steroids this weekend.

Yesterday's MRI was consistent with Wednesday's and he wants to talk meds on Monday. This just all seems so fast! I have to stay strong to care for my daughter so I am scared to death. Nobody can tell me what to expect. I haven't had any loss of strength, in fact, I'm training for a half marathon and it's going well. I ran 6 miles this week even with all this going on. When I've asked my neuro if maybe it isn't MS he just tells me that I've had multiple events this year so that, by definition, is MS. This is potentially devastating considering my daughter's situation and I guess I'm just looking for hope. My doctor just says we'll have to wait and see,but there are lots of good meds out there.

Can anyone give me any insight?
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Ash3 » Sat Jun 29, 2013 7:25 pm

It is scary and knowing the unknown is coming and yes there are a lot of medications. Just try to relax and breath. The stereoids will calm everything down and a treatment will be decided between you and your doctor. Make sure you inform the doctor of your daughter's situation which by the way you already are a very strong person you can handle this. It is a journey but look at it this way you are already living one. Take care. I hope this somewhat helps.Ash3
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby lyndacarol » Sat Jun 29, 2013 7:28 pm

Welcome to ThisIsMS, Bkank829. We are glad to share our experiences and opinions with you. My own unique opinion is centered on insulin; it is a highly irritating hormone and, I think, can be responsible for many of my MS symptoms.

Normally, the body produces insulin in response to blood glucose, which comes from the diet mostly. However, there can be other sources: mucus (as from a sinus infection) is heavily glycosylated; glucocorticosteroids (e.g., oral prednisone or IV Solu-Medrol) can also raise blood sugar levels. When blood sugar levels go up, the insulin level also rises in an effort to lower blood sugar back to normal. BUT the body always overcompensates with the amount of insulin. In my opinion, it is this excess insulin that initiates the cascade of MS symptoms. It affects many parts of the body.

I suggest that you request your GP to order a "fasting blood insulin test" – this is NOT the same as a blood glucose test, which is used to determine diabetes. Whereas the glucose test is VERY common, the insulin test is NOT done routinely and must be requested specifically. The optimal result for the insulin test is 3 UU/ML or lower. My insulin results have never been below 9 UU/ML.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby THX1138 » Sat Jun 29, 2013 11:18 pm

A scary, confusing situation to be sure.

Here is what I recommend:

1) Follow the doctors' instructions.

---- AND ----

No matter what your B12 level, normal or not, because B12 issues are not always so simple as a B12 test and because a B12 issue can look exactly like MS (lesions and all) :

2) Get and read the book, Could It Be B12?: An Epidemic of Misdiagnoses ---- You can read some of it right now for free online:

http://www.amazon.com/Could-Be-B12-Epid ... rds=b12+an


3) Remember to not rely only on meds.

I wish you the best.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 4:42 am

I have a MTHFR gene mutation which makes it more difficult for my body to metabolize b vitamins. I told this to both my primary and neuro but they shrug it off because the blood work that was run a few months ago looked fine. It's frustrating.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby jimmylegs » Sun Jun 30, 2013 5:16 am

ah, 'fine'. the good old 'normal' trap. were you able to get actual levels, or just the 'they're fine' party line? don't let the docs shrug it off, when vitamins are the last thing they're experts on.

here's a post that touches on some of the glaring issues with bloodwork. much of the info is transferable and applies to other scenarios than ms
regimens-f22/topic2489.html#p15460

check out the bloodwork subsection to save yourself some time.. it's a big post :)
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 5:28 am

They just told me they are "fine, :( When I ask questions my neuro tells me that I'm not going to be able to do anything to make the MS go away, we're just going to try to manage it. Ok, I'm not asking him to lead a prayer meeting, I just want to know if there are any other options.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby jimmylegs » Sun Jun 30, 2013 5:41 am

WOW I started looking at the mthfr enzyme and factors that influence its genetic expression.
found this fascinating resource worth an in-depth look. I've linked to chapter 6 only b/c it specifically touches on mthfr.
http://www.dramyyasko.com/resources/aut ... chapter-6/
epigenetics and nutrigenomics fascinate me. planning to read all of this resource.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 7:13 am

I don't even know how to start with all of that. Is there a way to find a physician who could help? Like i said, my current team just shrug their shoulders.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby jimmylegs » Sun Jun 30, 2013 7:44 am

will your current team give you a copy of the results for the nutrient testing you've had done to date?

as for chances of finding a physician to help, it depends to a degree on the system where you are.. what's your location, roughly?
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 8:30 am

Indianapolis
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 8:33 am

I found a bit ago that my MRI show 5 lesions.
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby jimmylegs » Sun Jun 30, 2013 8:47 am

if you can't get the docs to give you your results, there may be other members here who can advise you re finding someone good in Indianapolis.

if you can't find any doc to take your nutrient levels seriously, you can opt to have the testing done privately.
b12 panel $91 USD
http://www.lef.org/Vitamins-Supplements ... -Test.html
that way you get to decide if the numbers look fine or not.

there are other nutrients to consider, if you would like to be certain you do not share the nutrition issues common to the average ms patient.
background reading: regimens-f22/topic2489.html#p15460
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Celeste485 » Sun Jun 30, 2013 4:56 pm

Hi, my daughter has optic neuritis and was diagnosed recently with MS as well. Her vision improved after we came back home from the hospital. Her vision came back in just 24 hours after the hospital discharge. She still has some flickering left but I hope this will go away as well. I was wondering if you could help me, have you been to a pool swimming shortly before it happened?
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Re: I was diagnosed on Thursday, in hospital now, have many

Postby Bkank829 » Sun Jun 30, 2013 5:19 pm

Thank you all so much! I will read all the info you so kindly posted here. I really appreciate it. Today was a rough day for me, lots of tears.

Celeste, in answer to your question, I have not been swimming recently. I'm so glad your daughter's vision came back!
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