Seattle girl....recently diagnosed

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Seattle girl....recently diagnosed

Postby stella_blue76 » Sun Jun 25, 2006 8:16 am

Allo all!
My name is Michele and I was diagnosed at the end of April, after a 3-year battle with a HORRIBLE neurologist. I know these stories are a dime a dozen with all of us, but I’m still so frustrated with the way I was diagnosed I just feel compelled to share….

I had a terrible seizure in Nov of 2001, which compelled my PCP to get me to a Neuro. She ran all kinds of tests…an MRI and when that showed something she didn’t like, so she ordered a spinal. After all of that was said and done, she then told me there were two blood vessels in my brain that were compressed and asked me if I had migraines. I told her that I had them constantly. She then put me on several meds: first Neurontin, and then later a HUGE amount of Topamax. Those seemed to help with my migraines for a while, but they always crept back after a few weeks of being on them, so she would up the dosage. I kept having very small seizures, and she then put me on Lamictal. She made me feel like I was crazy and that nothing was wrong with me. I had read about MS, and I had then suspected that there was a possibility I might have it, but she kept saying that was not a possibility.

2006 rolls around, and in January I had jumped out of bed one morning and immediately fell and broke my leg, as when I stood up, I feel right back down. I couldn’t feel my right leg! I didn’t really give it a 2nd thought. It was just more a frustrating inconvenience. In March, my vision in my right eye has started to get a bit blurry and my right side of my face started twitching…just a little at first. I had thought that I was just very tired, and that was the result of that. The doc had then ordered another MRI. 3 days later, I could barely see out of my right eye, and the twitching was so bad, there were times my right eye was almost closed from it, and I could not lower the right side of my mouth, but the doc called me up and said “everything’s fine with your MRI!” The next day, I went to see an ophthalmologist to do an exam on my eye, as it was so cloudy and blurry. It took that eye doc to look at the MRI results and run several tests. He was the one that told me that I had MS. I was SO mad. How I can I go from “Everything’s fine” one day to “You have MS” the next? I knew I was done seeing that Neuro.

3 years of making me feel crazy, I felt a bit of relief, but incredibly scared at the same time. I met a new doc, who confirmed the eye doc’s diagnosis, and got me started on Copaxone. I started that 3 weeks ago, and I am doing SO much better now. I’m off all of those crazy meds, and I feel HUMAN again. I have symptoms pop up every once in a while, but at least now, I know what they are, and I am not crazy!

So, that was a long drawn out, rambling, but I hope to meet and share info here, and I’m looking forward to knowing you all….

Michele
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welcome!!!

Postby jimmylegs » Sun Jun 25, 2006 8:34 am

hi there welcome, what a frustrating story u have! i hope u can find some relief here.
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Postby EyeDoc » Wed Jul 05, 2006 7:35 am

It is interesting to note that the symptoms of MS are often so vexing to doctors, and that it is often an eye doctor that will catch one of the most classic signs of MS: optic neuritis. Although obviously not all MS sufferers will experience ON, I wonder just how many of us reading these forums had it as a definitive sign of our condition?
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Postby Arron » Wed Jul 05, 2006 9:37 am

Hello Michele, a belated welcome to you!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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reply to eyedoc

Postby jimmylegs » Wed Jul 05, 2006 2:50 pm

hey there, i know i read your musing earlier ED...

my family doctor, as soon as i exhibited symptoms that were not readily treated with b12 supplementation, sent me to a neuro who was far from casting around at a loss. he was a peripheral guy, not central, but he pretty much fast-tracked my testing and i had the tentative ms diagnosis within a week of my first acute symptoms, just in time to cancel an extended overseas trip. (which i'm on now, at last) and in about 6 weeks the ms clinic doc confirmed the ms conclusion.

i did not exactly fit the ON profile. my neuro expressed surprise at how good my eyes apparently are. so, they got it from all the mri findings, basically. do you think when people have trouble obtaining a diagnosis that in some cases their doc has not sent them for mri?
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Re: reply to eyedoc

Postby EyeDoc » Fri Jul 07, 2006 11:29 am

jimmylegs wrote:hey there, i know i read your musing earlier ED...

my family doctor, as soon as i exhibited symptoms that were not readily treated with b12 supplementation, sent me to a neuro who was far from casting around at a loss. he was a peripheral guy, not central, but he pretty much fast-tracked my testing and i had the tentative ms diagnosis within a week of my first acute symptoms, just in time to cancel an extended overseas trip. (which i'm on now, at last) and in about 6 weeks the ms clinic doc confirmed the ms conclusion.

i did not exactly fit the ON profile. my neuro expressed surprise at how good my eyes apparently are. so, they got it from all the mri findings, basically. do you think when people have trouble obtaining a diagnosis that in some cases their doc has not sent them for mri?


Your neurologist should not necessarily be surprised at how good your eyes are. It is a frequent symptom for MS, but there are many patients that will not exhibit any quantifiable dysfunction of the optic nerve early in the disease process. If there is no inflammation of the nerve an MRI will not show any signs to a physician.
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Postby sh8un » Fri Jul 07, 2006 11:58 am

Hi EyeDoc,
I am ever glad to have you here? I had ON when I was diagnosed. I think. I mean my R eye hurt and things were getting very blurry and I had a hard time with reds. However, when the Dr. looked in my eye they said that "it seems ok." Not sure what that meant but at that pain they said it was not ON. Yet I know that you can still have ON that is not noticeable by just looking into the eye since it could be anywhere along the optic nerve. I had to go to three different neuros to actually get them to send me for an MRI. I also had evoked potentials of my eyes which my neuro said showed "some slowing."
The only thing is that when I wake up in the mornings, I still have eye pain. No changes in the vision though. IT tends to get better throughout the day but then every once in a while when I look to one corner it still hurts. I am on Avonex and have been since Apr. I am not sure what to think of that. Is it still going on? how long does it take for the pain away?
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Postby EyeDoc » Tue Jul 25, 2006 7:53 am

sh8un wrote:Hi EyeDoc,
I am ever glad to have you here? I had ON when I was diagnosed. I think. I mean my R eye hurt and things were getting very blurry and I had a hard time with reds. However, when the Dr. looked in my eye they said that "it seems ok." Not sure what that meant but at that pain they said it was not ON. Yet I know that you can still have ON that is not noticeable by just looking into the eye since it could be anywhere along the optic nerve. I had to go to three different neuros to actually get them to send me for an MRI. I also had evoked potentials of my eyes which my neuro said showed "some slowing."
The only thing is that when I wake up in the mornings, I still have eye pain. No changes in the vision though. IT tends to get better throughout the day but then every once in a while when I look to one corner it still hurts. I am on Avonex and have been since Apr. I am not sure what to think of that. Is it still going on? how long does it take for the pain away?


I have a couple of questions for you:

1. Did you get definitively diagnosed with ON with inflammation showing on the MRI?

2. Please explain your eye pain with a little more detail to me. Is it only when looking in one direction? Is it painful when you press on the eye? Is it getting better? Worse?

You are absolutely correct that an eye doctor can look at your nerve and not see any problem even though you are experiencing pain, although in many cases there will be signs a doctor will be able to see. It all depends on the level of inflammation that is occuring at the moment of the exam, and whether or not the inflammation is affecting the portion of the nerve that is visible with direct observation by the eye doctor. Remember, the nerve exits the back of the eye and courses through the brain all the way to the back of the head before we "see". Any problem with the nerve, be it inflammation or being pressed on by an aneurysm or tumor, will affect our vision.

The visual evoked potential (VEP) that you had essentialy quantifies the function of the optic nerve. It tells us if the nerve is firing properly, that is, is the nerve sending its electrical impulse at the normal rate and with normal amplitude (strength of the signal). With the demyelination of the nerve that occurs with MS we will often see a slowing of nerve conduction on the VEP even in patients without active ON. This shows the test's ability to detect problems with the nerve even when the doctor cannot see them.

I know that is a bunch of medical gibberish, and if it bothering anyone on the board trying to wade through it, just tell me :)
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eye get it

Postby jimmylegs » Tue Jul 25, 2006 5:15 pm

sounds fine to me doc :)
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Postby sh8un » Tue Jul 25, 2006 10:20 pm

Hi Eyedoc
Thanx for responding in detail. There was never anything seen on my MRI that would affect the optic nerver and when the Dr.s would look into my eye they all pretty much said that "they look pretty much the same." WHen I had the EVP it showed "some slowing." My eye pain is a dull, bruise like pain which is worse when I look across a horizontal plane. It is usually worse in the morning which is scary. It also comes and goes. My vision is back to normal and is no longer affected by these episodes of eye pain. I just want to know if the pain is like any other MS symptom that comes and goes with stress etc. or if it only comes along when you have an attack? I hope that I answered everything and thanx again for your time.
NN
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Postby EyeDoc » Wed Aug 09, 2006 11:34 am

Well, this is where my professional and personal lives cross because professionally I would say the symptoms are likely due to a mild inflammation of the nerve. Personally, however, I tend to feel very mild eye pain (really more discomfort than pain) even though my vision has been nack to normal and I have not had ON for over 2.5 years. I personally feel that I get this feeling in times of stress or when I am very tired.

I attribute this to the fact that MS is always affecting our nerves and therefore is likely always affecting our optic nerves to some degree, even without active inflammation. Even though we are not measured as having active ON, we still have the effcts of very low, baseline MS activity.

I wish I had a solid answer to this, but it is the best I can do :) I can't come at this one from an unbiased perspective :p


sh8un wrote:Hi Eyedoc
Thanx for responding in detail. There was never anything seen on my MRI that would affect the optic nerver and when the Dr.s would look into my eye they all pretty much said that "they look pretty much the same." WHen I had the EVP it showed "some slowing." My eye pain is a dull, bruise like pain which is worse when I look across a horizontal plane. It is usually worse in the morning which is scary. It also comes and goes. My vision is back to normal and is no longer affected by these episodes of eye pain. I just want to know if the pain is like any other MS symptom that comes and goes with stress etc. or if it only comes along when you have an attack? I hope that I answered everything and thanx again for your time.
NN
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Postby Minai » Wed Aug 09, 2006 1:05 pm

EyeDoc wrote:I attribute this to the fact that MS is always affecting our nerves and therefore is likely always affecting our optic nerves to some degree, even without active inflammation. Even though we are not measured as having active ON, we still have the effcts of very low, baseline MS activity.


Wow, have I ever found this to be true! Excellent synopsis and advice!

The only other time that I had ever had ON, before MS; was when I came down with measles at age two.

Last year, a year after MS diagnosis; I got ON, along with trigeminal neuralygia (yes, worst pain known to Man, and to Woman, too!). Wear my contacts?! Forget it. Had to lower my prescription and heavily invest in new eyeware. Can't imagine life without RayBans, now. 8)

Couldn't tolerate looking at CRT screens, computer or otherwise! And, that's what I had been doing at work, for years. As a Civil Engineering Drafter/Designer, intense scrutiny, of course, is required. This was all big investment to replace, also. Poor husband had to patiently wait until I could research what new TV we should buy. That took a long time since I could not find much. And, then it was recommended (by a top military expert in the field, who we are fortunate enough to know) that we also try to eliminate as many EMF's in our home, as possible, too. Buy a gaussmeter to do so (no, not to hunt ghosts, with :wink: ). And, a modified earpiece for my cell phone and MP3 player, etc. Eliminate anything with potential for irritating the trigeminal, optic, and other nerves.

Well, the trigeminal neuralgyia subsided, thankfully. But, six months later, the ON was back. Worse than before. Went blind in one eye for several weeks. And, it seemed to be triggered from a dental infection I had, this time. Once I got through surgeries, and started clearing up infection, did a couple rounds of Solumedrol therapy; the blindness went away and now am able to wear contacts, again (for now, at least!). Am now certainly convinced to avoid such triggers, if at all possible, at all costs.

I do miss the vision clarity that I used to have. And, a tiny twitch under one of my eyes still reminds me of how right you are about remaining MS activity.

Again, certainly appreciate your professionally-biased, personal advice and opinion, and glad that you are here :D

Minai
Last edited by Minai on Wed Aug 09, 2006 6:26 pm, edited 1 time in total.
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Postby sh8un » Wed Aug 09, 2006 3:52 pm

Hi
Thanx for replying EyeDoc. I think I would have to agree with you. My eye is just sore all the time. It's kind of annoying. I guess I can live with it though. Not like there is any other choice. :x
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Expected response?

Postby lyndacarol » Wed Aug 09, 2006 4:44 pm

You know my suspicion of insulin; so this comment will not surprise you.

EyeDoc wrote
I personally feel that I get this feeling in times of stress or when I am very tired.


I've read that the body under stress produces extra insulin.
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Postby EyeDoc » Mon Aug 14, 2006 2:06 pm

sh8un wrote:Hi
Thanx for replying EyeDoc. I think I would have to agree with you. My eye is just sore all the time. It's kind of annoying. I guess I can live with it though. Not like there is any other choice. :x


LOL! Nope...no other choice at all, although I bet I know what we would all choose if we could :)
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