Hey

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Hey

Postby JordanaDG » Mon Nov 11, 2013 2:09 pm

So I had sort of posted here before when I had a feeling that I may have MS. I didn't post much after, because I hadn't been diagnosed.

Well within the last month I suddenly got a black dot in my vision which grew over day and my vision went grey (only in my right eye). Initially I thought it was optic neuritis, and family members who have MS said that ON was what lead them to be diagnosed with MS. Well the front of my optic nerve looked good, but they said whatever is going on is farther in the optic nerve about a cm back.

Well they said that my diagnosis is likely to be two things, but it will be he neuropthamologist that will determine what is going on. The doctors that were in to talk to me said that I should keep living as normal as possible but that the news that may be coming may be bad. I asked what their unofficial opinion was of what it may be and they said that they definitely can't know anything until MRIs and CT's can be done, but they expected that it was either MS or a brain tumor that may be constricting the nerve. They didn't want to scare me but they wanted me not to be completely shocked if I heard that being the result.

I don't know which I would rather have. MS or brain tumor, neither is a great diagnosis and neither is for sure, but when three doctors are trying to prepare me for bad news and look fairly worried I take it seriously. I am just here to formally introduce myself now that a doctor has said I should check up on it more.

So, my name is Jordana, I'm 18 and live in Ontario, Canada. I typically am a fairly optimistic, and outgoing person, so I do apologize for my introduction post being so depressing haha. I am usually an active person who loves doing hard labor. I was a firefighter and was planning on being a Police Officer, but I think that may be a bit of a stretch haha. I always try and find the humor in every situation, and try and brighten it up a bit.

So I will post more once they find out what is causing my spotty vision haha. Thanks for reading.
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Re: Hey

Postby MarkLavelle » Mon Nov 11, 2013 4:37 pm

That's pretty scary news, Jordana, but don't let yourself get ahead of the data.

I already have an MS diagnosis, and assumed it was ON when I lost the right half of my vision (both eyes). The ophthalmologist said no, and it turned out to be a pretty minor stroke (and my vision almost completely recovered over 2-3 months).

You're mighty young for a stroke (I was 56 at the time), but I wanted you to know that there are other -- and somewhat less scary -- possible explanations for your sx.

Good luck with your scans!

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Hey

Postby JordanaDG » Mon Nov 11, 2013 5:09 pm

Yeah, their guesses scared the hell out of me. They had mentioned things such as viruses, bacterial infections they had just said my symptoms aren't typical of bacterial or viral. They didn't mention anything like a stroke, though something similar could very well have happened.

They had just given an opinion but they did reassure me there can be many causes. When they were doing their "doctor talk" as I call it (where they try and have a private conversation in front of a patient using medical terminology) they mentioned myelin deterioration or meninginoma?

When I hear scary stuff like MS or a brain tumor I did really start to panic and I always have been pretty quick to the trigger when I hear stuff that scares me lol. I'm a worrywart.

I forgot to mention that my vision has declined in the past couple months and they have said I am considered legally blind now. I can still see, but not very well.

Well, not much I can do until I see the neuropthamologist and have and MRI done, just wait and try not to get myself too worked up about what it could be.

Thanks Mark
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Re: Hey

Postby lyndacarol » Mon Nov 11, 2013 6:42 pm

Him
JordanaDG wrote:So I had sort of posted here before when I had a feeling that I may have MS. I didn't post much after, because I hadn't been diagnosed.

Well within the last month I suddenly got a black dot in my vision which grew over day and my vision went grey (only in my right eye). Initially I thought it was optic neuritis, and family members who have MS said that ON was what lead them to be diagnosed with MS. Well the front of my optic nerve looked good, but they said whatever is going on is farther in the optic nerve about a cm back.

Well they said that my diagnosis is likely to be two things, but it will be he neuropthamologist that will determine what is going on. The doctors that were in to talk to me said that I should keep living as normal as possible but that the news that may be coming may be bad. I asked what their unofficial opinion was of what it may be and they said that they definitely can't know anything until MRIs and CT's can be done, but they expected that it was either MS or a brain tumor that may be constricting the nerve. They didn't want to scare me but they wanted me not to be completely shocked if I heard that being the result.

I don't know which I would rather have. MS or brain tumor, neither is a great diagnosis and neither is for sure, but when three doctors are trying to prepare me for bad news and look fairly worried I take it seriously. I am just here to formally introduce myself now that a doctor has said I should check up on it more.

So, my name is Jordana, I'm 18 and live in Ontario, Canada. I typically am a fairly optimistic, and outgoing person, so I do apologize for my introduction post being so depressing haha. I am usually an active person who loves doing hard labor. I was a firefighter and was planning on being a Police Officer, but I think that may be a bit of a stretch haha. I always try and find the humor in every situation, and try and brighten it up a bit.

So I will post more once they find out what is causing my spotty vision haha. Thanks for reading.


We are glad to hear from you again, Jordana.

I am surprised that your doctors would offer ANY opinion on your situation without MRIs, CT's, or other testing. At the very least, the blood tests in a neuro exam, as suggested by the University of Chicago, should be considered:

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

• Vitamin B12 and folate levels (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)
• Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
• Vasculitis evaluation
• Oral glucose tolerance test (I suggest a "fasting blood insulin test" as before.)
• Antibodies to nerve components (e.g., anti-MAG antibody)
• Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
• Lyme disease (Bartman, among other TIMS members, urge this testing.)
• HIV/AIDS
• Hepatitis C and B
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: Hey

Postby JordanaDG » Mon Nov 11, 2013 7:10 pm

Hi Lyndacarol,

The one doctor is a friend of my Aunts so I asked for his honest opinion, I wouldn't hold a friend of the family accountable if his guess was wrong, it is after all only a guess of his. I wouldn't usually ask a physicians unofficial opinion because they typically won't give you one, they don't want to take a risk of telling someone they may have something so serious and end up not having it.

I did have some blood tests done, not sure which in particular but here's the ones I know. I don't know my numbers though.

-I do have Graves Disease which caused my Hyperthyroidism which is pretty severe
-Liver and kidney is normal (another thing I had to ask was, is it typical in MS to suddenly lose complete inability to urinate? When you do urinate you urinate a lot but still feel the urgent need to pee and have had many tests ensuring I didn't have a UTI? It hit me one day and I was admitted in emerg, catheterized and had a CT to check for any masses near the bladder. May I just say catheters suck!! Lol)
-Lyme tested negative
-HIV/AIDS tested negative
-Hep B and C tested negative as well

I'll get the neuro to refer me to the other tests, I'm going to make sure I get the fasting test this time too! I think a lot of the time they don't do all the tests needed to really see what's going on, like a lot of the tests you recommend I've never seen on my labs before.

Thanks for the list of tests to get a better perspective of what's going on!
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Re: Hey

Postby lyndacarol » Mon Nov 11, 2013 8:15 pm

JordanaDG wrote:Hi Lyndacarol,

The one doctor is a friend of my Aunts so I asked for his honest opinion, I wouldn't hold a friend of the family accountable if his guess was wrong, it is after all only a guess of his. I wouldn't usually ask a physicians unofficial opinion because they typically won't give you one, they don't want to take a risk of telling someone they may have something so serious and end up not having it.

I did have some blood tests done, not sure which in particular but here's the ones I know. I don't know my numbers though.

-I do have Graves Disease which caused my Hyperthyroidism which is pretty severe
-Liver and kidney is normal (another thing I had to ask was, is it typical in MS to suddenly lose complete inability to urinate? When you do urinate you urinate a lot but still feel the urgent need to pee and have had many tests ensuring I didn't have a UTI? It hit me one day and I was admitted in emerg, catheterized and had a CT to check for any masses near the bladder. May I just say catheters suck!! Lol)
-Lyme tested negative
-HIV/AIDS tested negative
-Hep B and C tested negative as well

I'll get the neuro to refer me to the other tests, I'm going to make sure I get the fasting test this time too! I think a lot of the time they don't do all the tests needed to really see what's going on, like a lot of the tests you recommend I've never seen on my labs before.

Thanks for the list of tests to get a better perspective of what's going on!


I urge you to ask for copies of your test results and keep your own file.

As you may know, Jordana, Graves' Disease (or Hyperthyroidism) is an "autoimmune" disease. It is not uncommon for a person diagnosed with one autoimmune disease to be diagnosed with a second one, or even a third one.

Although you follow a very healthy diet (with no wheat/gluten that I can see), I suspect that MY MS is the result of a lifelong diet heavy in wheat/gluten and carbs in general: my diet led to Intestinal Permeability, which allows too much insulin to leak from my intestine into my bloodstream – this excess insulin has led to insulin resistance, affecting the smooth muscles as well as skeletal muscles.

I suspect that you also have excess insulin – the smooth muscles controlling the urinary bladder (detrusor and sphincter muscles) are thickened and stiffened by insulin and may account for your problems with urination. The irritation of insulin in the bladder can feel like a UTI and cause urgency/frequency of urination (or even inability at all for a while).
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: Hey

Postby JordanaDG » Mon Nov 11, 2013 10:50 pm

Yes, I just recently got into the habit of obtaining a copy of my results, found it was especially helpful with my Graves, I also have Rheumatoid Arthritis, autoimmune diseases are frequently in my moms side of the family haha.

When I was younger, a lot of our diet was wheat and gluten, so it is completely possible that it could have caused symptoms like those I'm having. Insulin related issues also run in the family, though I don't know whether they are hereditary problems or not.

Ahh the more embarrassing part of my excretions, I noticed that it's been harder to actually make the muscles move the contents of my bowels. So that could explain some things .. Hahaha, thanks for clearing that up for me!
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Re: Hey

Postby NHE » Tue Nov 12, 2013 3:36 am

JordanaDG wrote: I asked what their unofficial opinion was of what it may be and they said that they definitely can't know anything until MRIs and CT's can be done

Start with the MRI and go from there. MRI is a standard diagnostic procedure for MS. Reserve the CT scan for times when it is absolutely necessary. CT scans use a very high dose of x-rays. For example, a single CT scan of the chest exposes you to the equivalent radiation of about 270 regular chest x-rays. That's many lifetimes worth of x-rays in a single scan. 8O
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Re: Hey

Postby JordanaDG » Tue Nov 12, 2013 7:07 am

Holy frig! That's a lot of x-rays! I had a CT of my abdomen to look for masses and leaks when I couldn't urinate last month.

MRI it is for me then! I don't want any extra radiation than I need after my Radioiodine for the thyroid haha.
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Re: Hey

Postby jimmylegs » Tue Nov 12, 2013 3:05 pm

fyi, detailed nutritional suggestions here:
regimens-f22/topic2489.html
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Re: Hey

Postby MSandI » Tue Nov 12, 2013 4:13 pm

I was at the ms clinic a couple of weeks ago... and yes there was a police officer in there as well. Not waiting for anyone, because she was filing the same papers as me. So you should check it out, before you disqualify yourself Jordana.
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Re: Hey

Postby JordanaDG » Tue Nov 12, 2013 8:12 pm

Thanks Jimmylegs!

Thanks MSandI, sadly apparently the ophthalmologist out down that I am considered legally blind, and I did look up provincial departments, if I do end up with MS as my diagnosis I'm not eligible.

With having lost my license from hyperthyroidism from fainting, being considered legally blind and possibly having MS I don't think I have too much of a shot lol. Even if it is cleared up when I apply, my medical history looks a wee bit rough lol. Apparently blind, fainting cops aren't what they're looking for lol.

Ohh well, there are lots of career paths I can choose from, there's many opportunities to volunteer with the police department, as well as other emergency services! :)
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