What is wrong with me? :-( feeling a bit crazy.

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

What is wrong with me? :-( feeling a bit crazy.

Postby staceo » Mon Oct 14, 2013 11:30 am

neuro said not probably not ms. and i really want to believe him but why the symptoms?

I have one 3mm lesion in the subcortical frontal lobe and one 9mm in spinal cord. Spinal cord was there 3 years ago... brain lesion was not. 3 years ago I also didn't have any neurological symptoms and now hyperreflexia and balance issues.

High Vitamin B12 (1140) and low Vitamin D (25).

Lyme antiibodies positive but Western Blot neg.
Hep. A antibodies positive but further testing neg.
Thyroid antibodies VERY high but no thyroid disease.

Fatigue, nerve and muscle pain. Brain fog.... but according to the neuro I saw... "You're fine".

Feeling sad and wondering if i'm just crazy.
staceo
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Re: What is wrong with me? :-( feeling a bit crazy.

Postby CaliReader » Mon Oct 14, 2013 11:53 am

You're asking the right questions. I don't know enough about Lyme to know, but I would follow up that path as well.

You have to meet the MacDonald criteria before you can be diagnosed with ms. Neurologists can be misleading when they talk to someone who might have ms but doesn't yet tick all the boxes for a diagnosis.
Perhaps he/she thinks you have early ms, or 'benign' ms and wants to encourage you to get on with your life while you still don't have motor control issues. Perhaps he/she is busy and not paying attention. Regardless, you could have used an acknowledgment that you don't feel well in wierd, strange, uncomfortable ways. Also pain can be treated. I only take pain meds at night because I want to be more awake during the day but that's my choice. The bed time pain drugs are a life and sanity saver for me.

If it were me back before I was diagnosed, I would probably have returned in 6 months to revisit the issue. Today, less insecure about my experience and symptoms and more comfortable with the medical system, I would get a second opinion from a different neuro.

You didn't say which country you're from. Some places offer early treatment for possible MS, others require full blown diagnosis with MacDonald criteria before drugs are offered. The kindest interpretation of what your neuro did is that he/she sees possible ms, must wait for more lesions/ symptoms to develop to diagnose, and doesn't want you to worry in the meantime.
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Re: What is wrong with me? :-( feeling a bit crazy.

Postby staceo » Mon Oct 14, 2013 4:34 pm

ok, so then how many lesions do you have to have to have ms? and if not ms, why do i have a newly formed lesion in my brain? Maybe mini stoke? from what i've read that could be it but then he should have least told me to take an aspirin each day. At my age 52 it's seems kind of young to get brain lesions for no reason. I live in Calif. and have a PPO so maybe i'll see another doctor to at least explain things. I just feels horrible when you know something is going on with your body, test indicate problems, but the doctor says, no you're fine. grrr.
staceo
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Re: What is wrong with me? :-( feeling a bit crazy.

Postby CaliReader » Tue Oct 15, 2013 4:23 pm

It's complicated, and I'm no doctor. These links will get you started.

https://en.wikipedia.org/wiki/McDonald_criteria

http://www.ncbi.nlm.nih.gov/books/NBK48930/

And yes, this is miserable to go through whether you end up having MS or not. I'm sorry you're going through it. Good luck.
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Re: What is wrong with me? :-( feeling a bit crazy.

Postby staceo » Wed Oct 16, 2013 10:04 pm

Okay, thank you very much. The 2nd link was really helpful and explained the different lesion types very well. Now I understand a bit more.
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