This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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So, What Was REALLY Going On?

First let me start off by saying how grateful I am for my neurologist! She really is the best.

We left my house just after 8am. It was VERY cold out but the roads were good. Due to the extreme nausea that I have been having I slept most of the way. I woke up somewhere around the top of the pass and it was beautiful. All covered in snow....I wish I would have had the camera. We arrived early enough that we were able to spend sometime at the outlet mall in North Bend. My dad had some things he wanted to get for my mom. Shh! Anyway, then we headed to the VA hospital (that place is huge) to go to the PX where my dad had a couple things he wanted to get for my sister and son. Next stop was my appointment.

The appointment was at 1:20. I was first seen by the medical student who talked to me about what happened over the last three weeks, confirmed my medications, and did a neuro exam. She then went to talk to my doctor and they both came in to talk to me. After quite the discussion my neurologist and she did an exam, she took us out to her computer and pulled up not only the MRI, but also the normal and abnormal CT scans. She explained all of them to us and showed us what the radiologist thought may have been a bleed (and why it could not be a bleed). She also explained to us why even though all of the lesions are on the left side of my brain the majority of my symptoms are on the left side of my body. That yes, there can be lesions in other parts of the body....yes, there can be damage done in the brain that does not show up in the MRI....and that although the MRI is a great diagnostic tool, it does not always show exactly what is going on with the patient. There are some patients who have many lesions but little symptoms and others who have many symptoms and few lesions. This is one more difficult piece of the puzzle I suppose.

The good news is that she does not think this last three weeks has been a relapse. She said that I am having what is called a complicated/complex migraine. Basically that is a more rare form of migraine that presents similar to a stroke. The symptoms are similar in nature and if it goes untreated it can cause permanent damage. It also can not be treated with your typical migraine medication which is why I have not responded to the meds the doctors at the hospital gave me. She put me on a medication to help release the pressure from my brain. She also put me on a medication to help with the nausea.....the unfortunate part of that is that it turns out I have to have it in the form of a suppository because I have quit responding to my meds orally. She is also having me start on Aspirin 325 mg four times a day. The combination of these three medications as well as the Topamax is supposed to help with this type of migraine.

Today was my first full day of this and so far I have not noticed much of anything, but I really didn't expect much on the first day. I was told to give it a couple days and email my neurologist and then follow this for a couple weeks. I am sure this will help out and then I am praying that I NEVER EVER have one of these again. More than anything though......I am so happy that this was not MS and I'm relieved it was not a stroke. :) I hope you are all doing well. Take care.


Vivian said...

Oh sweetie, like you needed something else to add to the pot. I am thankful for you that it was not a relapse or a stroke. I really hope that the pain and nausea will go away quickly for you. What a great neuro, I can see why you make the drive. Thanks for the update, feel better soon.

Linda D said...

So glad to hear a sense of "relief" in your writing...even if the relief has yet to come in physical form!

Thinking of you...

Linda D. in Seattle

Jaime said...

Thank you for all of your well wishes. I am sure that I will be back to my old self soon enough. Thanks for all of the well wishes. I hope you and your family are doing well. Please take care.

Jaime said...

It is a relief to know that even though I don't necessarily feel better just yet that I have the help I need. I hope that you are doing better as well. Take care of yourself.

Topamax Side Effects said...

My name is Mary Davis and i would like to show you my personal experience with Topamax.

I am 46 years old. Have been on Topamax for 30 days now. I would not take this for migraines. I've tried everything for migraines but this was by far the worst experience I've had with any medication. I'm sticking with my Imitrex injections.

I have experienced some of these side effects -
I had the tingling feeling in my hands and feet. But I also kept having memory issues. Friends kept teasing me and saying I was on Dopamax. I thought it would get better. One day I started having constant seizures and ended up in Neurology ICU for five days. Almost killed me! It wasn't until they had me completely off Topamax that I finally became coherent. I remember nothing while in the hospital ICU. I was totally out of it.

I hope this information will be useful to others,
Mary Davis

Jaime said...

Hi Mary,

I am sorry to hear of your reaction to Topamax. That is horrible. I do hope you are doing better now.

One thing I would like to say however is that we all have different reactions to different medications. I think it is very important that when considering a medication it is discussed with the doctors and you are aware of all the pros and cons that can come with the medication.

With my migraines I actually got worse with meds like Imitrex but what I found out is that there are various levels and types of migraines. The type of migraine I get actually is a more rare type and will not respond to typical migraine medications because these medications actually make my migraines worse. Having said that, that is not the norm when it comes to migraines...most people will probably get benefit, I just happened to not be one of those cases. So I think it is important to remember that what works for me may or may not work for you and vise versa.

Seems to me this is the case with all medications. That has certainly been the case for me when it comes to the MS meds. I know people who have done great on Avonex and the other interferons, but my experience with it was one that I would have to say would be a VERY last case resort to ever go back on it...actually my reaction was so severe that I would prefer to go without meds than take that again.

I hope this finds you feeling better. Take care!

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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