Totally Confused

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mrscaintex
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Totally Confused

Post by mrscaintex »

So I had an MRI performed because what started out with the best way to describe is white hot flashes of pain that would last for hours in the same spot. Then the next time it would flair up it could feel like something hot was being pour down my side or leg (or wherever it decided to act up). Then the restless leg syndrome kicked in. Next thing I know it's full body.

I get my MRI back and it states the following and my doctor didn't tell me a thing. Just put me on Parkinsons medicine but didn't tell me a diagnosis.

The ventricular system is normal in size and configuration.

There are several small foci of abnormal T2 signal seen in the white matter. The first lies in the right frontal white matter anteriorly and measures approximately 2mm in diameter best seen on axial FLAIR image #12. An additional somewhat larger focus is noted near the gray/white junction white matter right frontal lobe superiorly on axial FLAIR image #8 measuring 3 to 4 mm. There is an additional subtle 2 mm focus on increased T2 signal within the frontal white matter superiorly on the right near the gray/white matter measuring approximately 2 cm. There is no mass or mass effect.

Any help would greatly be appreciated.

Steph
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Scott1
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Re: Totally Confused

Post by Scott1 »

Hi,

It's always a bit difficult for a patient to rely on, or try to interpret, those reports.

What medication did he put you on and did it make a difference?

Were there any other tests as well?

Regards,
mrscaintex
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Re: Totally Confused

Post by mrscaintex »

My doc put me on Mirapex which made me nice and nauseated. It also made me doze off while sitting at the light. So he put me on Klonopin which does work but I can only take it at night because it knocks me out. He put me through a battery of tests (mainly because he calls me a ghost and he never sees me) but it was from head to toe, MRI, CT, blood tests, echocardiogram, stress test you name it. No definitive answers though. It's frustrating.
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hargarah
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Re: Totally Confused

Post by hargarah »

1) It is very difficult for any of us to interpret the results...especially if you're Doctor cannot or did not.

2) If you have a couple of obvious MS signs, like a shock in your spine when you bend your neck forward or vision problems...it would be easier.

3) Although I'm not too fond of neurologists, they will probably do a better job, because they read the journals and have amasses a great deal of topical experience.

4) Remember, there is only a 30% correlation between plaques and MS symptoms.

I don't know how much this helps, but you are dealing with the brain, so no one is an expert in that area...they just translate experience and historical evidence.
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Scott1
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Re: Totally Confused

Post by Scott1 »

Hi,

One of the reasons you say you are confused is that you have been given very little information. The Mirapex is used for Parkinsons and it works on a neurotransmitter called Dopamine. The Klonopin works on a particular receptor in the brain associated with gamma amino butyric acid . There can be several receptors associated with GABA but the FDA note does not detail which ones. (very hard to prove which one).

Your best source of truth is the FDA notes for each product. They are derived from statistically meaningful studies associated with the licensing of the product. Doctors usually don't read this stuff but they should. If you are unfamiliar with the language then the easiest way is to print the pages and get a yellow highlighter to mark the words you understand. See what the sentences in yellow tell you then start looking up the terms you don't know. It's a drag but suddenly you will understand what they say at least well enough to be informed. The links are too long for this format so google "mirapex fda" and "klonopin fda" and look for the PDF reports.

At a glance, you doctor is just guessing what to do next by switching from one style of medication to a completely different style. It may be an educated guess but its still a guess. The learning curve is always slow. His first guess may have been his best but not all medications are perfect.

If it is Parkinsons then dopamine is an area to explore. Unfortunately there's no point taking a medication with dopamine. You need a precursor. You can increase your intake of precursors that are in common foods. The section on plants in this link https://en.wikipedia.org/wiki/Dopamine shows just how common the foodstuffs are.

Tests should look for infections like mycoplasmas, rickettsias, chlamydias or any other groups as the bacteria involved can scavenge nutrients before you can get to utilise them. Consequently, diet becomes important.

Hope that helps.

Regards,
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