View Full Version : Not diagnosed, but wondering...
Hi..
I havent been diagnosed with MS. In fact, I was told by a neuro that my optic neuritis was migraine induced, and that the numbness in my hip and knee are from Meralgia Paresthetica (basically a trapped sensory nerve)
Basically, I got the MP in April when my hip went numb while walking with my boyfriend at the zoo. The Optic Neuritis showed up at the end of August. I had strep throat and was taking antibiotics. I didnt feel good that week and a few days into the antibiotics my left eye started to hurt when I moved it. Then I woke up one morning with a massive blind spot in my eye, went to the opthamologist and he's the one who's put the total fear of MS into my head.
well, actually he's not the one who scared the crap out of me. When I went for the MRI, I had to wait a day for the results. They sent the results to my regular doctor and to the opthamologist. The physician's assistant at my regular doctor is the one who called me and told me that the report said that there was nothing abnormal on the MRI and that I was ok... So, I was relieved. Then about an hour or two later, the opthamologist called me and told me that there were 2 white matter lesions found on the MRI!
I called the regular doctor's office to find out why I was told conflicting info. The PA had apparently not read all the way thru the report. There were three pages, and the 3rd page is the one that had the info about the white matter lesions.
So, I went to a neuro. The neuro checked me out, and said that what he saw on the MRI (the 2 white matter lesions) "were not in a place that would be indicative of MS".
Umm...ok...then what are they indicative of?? (he suggested migraines)
he then told me that the ON was caused by migraines, and the MP was caused by my weight, and a fall (I fell forward onto my right leg HARD twice on the day my hip went numb) He said the Lateral Femoral Cutaneous Nerve in my right hip was impinged, and that it will either heal or it wont, but that "it will take a long time".
He then told me that I dont have MS.
I'm not so sure about that diagnosis tho.
I've been reading a lot of stuff about MS, Optic Neuritis, and Meralgia Paresthetica. I'm actually quite obsessed with it lately. (to the point that my dad and my aunt, both medical professionals, think that I'm nuts or a hypochondriac)
I'm really starting to think that I have MS. I just dont know how to deal with people who basically just blow me off as a hypochondriac. Because, you know...if I have MS, it would really be nice to be able to get some treatment, rather than a medical brush off.
Any suggestions, other than finding a new neuro? I know from some medical ethics classes I took when I was trying to get a medical transcriptionist certificate that I have the right to ask for a second opinion. I just dont know if I want to ask the doctors who have been brushing me off for a referral. (at least the opthamologist has been listening to me)
There are a lot of people who have a symptom that is classic for MS, like optic neuritis, but it turns out that they don't have MS.
It does sound like there is another explanation for your numbness, so there isn't much reason to think that that is MS.
If you really want to do a better job ruling out MS, a spinal tap might be helpful. If your optic neuritis truly is caused by migraines, then you would expect the spinal tap to be normal too.
I don't really know the right way to ask for tests. Some doctors get annoyed.
National MS Society's Sourcebook (contains much information from ABCR drugs, to diagnosis, to symptoms, etc.)
http://www.nationalmssociety.org/Sourcebook-Topic.asp
MS Glossary:
http://www.nationalmssociety.org/glossary.asp
MS Brochures:
http://www.nationalmssociety.org/brochures.asp
US MS Clinics:
http://www.nationalmssociety.org/Tre...0Locations.asp
Link to good neurologists in Canada and the US:
http://www.msneuroratings.com/
Another link to good neurologists in Canada and the US:
http://clams.org/goodocs.html
MS Medications:
http://www.jsumption.com/imssf/modul...rtid=61&page=1
http://www.nationalmssociety.org/Med...%20in%20MS.asp
As you will read, migraines Can be tied into MS. I had them before I was diagnosed. You know your body best; seek a good neurologist to find out exactly what is wrong. Been there...it's very frustrating.
Take care.
Thanks for the suggestion.
I was just re-reading the neuro's report that he sent to my regular doctor and my eye doctor (eye doc gave me a copy) and it says that he "sees no reason to suspect a demylineating disease unless there are further symptoms" or something to that effect...so maybe he's not totally brushing my suspicions off, he just cant go any further with a diagnosis with what's happened so far.
I'm one of those people who just has to know...NOW! I'm not a patient person and I am way too curious for my own good when it comes to researching things.
I hadnt really read the neuro's report very closely, even tho I've had the copy for awhile...mostly because my eye has been giving me fits and reading things on paper is for some reason kind of difficult. (reading from the computer is easier...I can just increase the text size) My eye has improved a lot in the past week or so and I was able to read the actual newspaper this morning, rather than resorting to the crappy online edition.
I guess I'm just still feeling a lot of anxiety from having the crap scared out of me when they suggested that MS could be a reason for the ON and MP.
National MS Society's Sourcebook (contains much information from ABCR drugs, to diagnosis, to symptoms, etc.)
http://www.nationalmssociety.org/Sourcebook-Topic.asp
MS Glossary:
http://www.nationalmssociety.org/glossary.asp
MS Brochures:
http://www.nationalmssociety.org/brochures.asp
US MS Clinics:
http://www.nationalmssociety.org/Tre...0Locations.asp
Link to good neurologists in Canada and the US:
http://www.msneuroratings.com/
Another link to good neurologists in Canada and the US:
http://clams.org/goodocs.html
MS Medications:
http://www.jsumption.com/imssf/modul...rtid=61&page=1
http://www.nationalmssociety.org/Med...%20in%20MS.asp
As you will read, migraines Can be tied into MS. I had them before I was diagnosed. You know your body best; seek a good neurologist to find out exactly what is wrong. Been there...it's very frustrating.
Take care.
thanks for the links.
I'm one of those people who just has to know...NOW! I'm not a patient person and I am way too curious for my own good when it comes to researching things.
I'm not considered to be a remotely patient person either when it comes to these things.
I guess I'm just still feeling a lot of anxiety from having the crap scared out of me when they suggested that MS could be a reason for the ON and MP.
It scared the carp out of me too the first time I heard that MS was a possibility.
cricket52
10-05-2006, 04:50 PM
Hi Erin:
You have come to the right place.
The McDonald criteria is the gold standard for dx. Sometimes it takes years to get a dx of MS.
Keep a journal of your symptoms. Read all you can and if the people around are calling you a hypochondriac, don't tell them how you feel unless it's serious. This forum is a good place to ask questions and educate yourself.
MS is not a death sentence. For many, it's barely a life sentence, it depends on the severity, type, and individual. You will see the best and worst here, all kind, brave individuals. They have inspired and helped me.
Keep us posted on how you are doing.
The eye doctor had also suggested that the eye problem could be caused by several other things...they all scare the heebie jeebies out of me. The possibility of MS is the only one that makes sense to me....altho I do realize that I might not have it, and the optic neuritis and the meralgia paresthetica might just be two separate problems that just happened to appear fairly close to each other. (the MP in April, ON in late August)
As for not being a very patient person...I'm one of those people who will snoop thru the wrapped Christmas presents two weeks before Christmas. (I got really good at lifting tape up off of wrapping paper and opening a present to see what it is, and then re-wrapping it so no one knows that I peeked) :D
Hi Erin:
You have come to the right place.
The McDonald criteria is the gold standard for dx. Sometimes it takes years to get a dx of MS.
Keep a journal of your symptoms. Read all you can and if the people around are calling you a hypochondriac, don't tell them how you feel unless it's serious. This forum is a good place to ask questions and educate yourself.
MS is not a death sentence. For many, it's barely a life sentence, it depends on the severity, type, and individual. You will see the best and worst here, all kind, brave individuals. They have inspired and helped me.
Keep us posted on how you are doing.
What's the McDonald criteria?
I've been reading a lot about MS, and from what I can see it's not the most horrible thing that can happen to a person. It sucks, but it's not always the end of the world.
It's still kind of scary to think about. Before I went to see the neuro, I was having to take ativan for the anxiety. (I was breaking the pills in half, breaking the half in half, and taking the smallest piece) Even tho he told me that he didnt think I had MS, I'm still feeling the anxiety. Not as much, but it's still there.
My aunt (a nurse practitioner) thinks that I'm being a hypochondriac, but I'm just one of those people who will read anything and everything about certain medical situations because I want to be informed and have an idea about things when I go to the doctor. I like to be able to ask intelligent questions. (or, at least what I think are intelligent questions. The doctors are probably thinking to themselves that I'm a lunatic and wondering if they should write me a Rx for a tranquilizer)
Hopefully I am being a hypochondriac and will end up mostly totally healthy. I just dont like it when people treat me like I'm a hypochondriac.
What's the McDonald criteria?
I've been reading a lot about MS, and from what I can see it's not the most horrible thing that can happen to a person. It sucks, but it's not always the end of the world.
It's still kind of scary to think about. Before I went to see the neuro, I was having to take ativan for the anxiety. (I was breaking the pills in half, breaking the half in half, and taking the smallest piece) Even tho he told me that he didnt think I had MS, I'm still feeling the anxiety. Not as much, but it's still there.
My aunt (a nurse practitioner) thinks that I'm being a hypochondriac, but I'm just one of those people who will read anything and everything about certain medical situations because I want to be informed and have an idea about things when I go to the doctor. I like to be able to ask intelligent questions. (or, at least what I think are intelligent questions. The doctors are probably thinking to themselves that I'm a lunatic and wondering if they should write me a Rx for a tranquilizer)
Hopefully I am being a hypochondriac and will end up mostly totally healthy. I just dont like it when people treat me like I'm a hypochondriac.
I don't think that it's hypochondria to be reading up on MS if you have been told by an opthamologist that you have optic neuritis. Was that a definite diagnosis of optic neuritis? If so, keep in mind that a lot of people with optic neuritis don't go on to develop MS, particularly if they don't have the characteristic lesions on MRI.
cricket52
10-05-2006, 05:59 PM
Hi Erin:
I agree that you are not being a hypochondriac. You have learned that you have to be your own advocate and educate yourself and fight for decent medical care. You know your body and you need to be taken seriously.
Of course you are scared. Who wouldn't be? ON is scary business, and to be hit with a possible MS dx would freak anyone out.
McDonald criteria link - the two episode thing makes a dx of MS a long process sometimes. 5% of MS patients don't show lesions.
http://www.clevelandclinicmeded.com/diseasemanagement/neurology/multsclerosis/table1ms.htm
It's a known fact that patients who have forum support and information are better patients according to their doctors - so read and research all you want. How else will you learn? :)
I don't think that it's hypochondria to be reading up on MS if you have been told by an opthamologist that you have optic neuritis. Was that a definite diagnosis of optic neuritis? If so, keep in mind that a lot of people with optic neuritis don't go on to develop MS, particularly if they don't have the characteristic lesions on MRI.
I had two of what the neuro called "white spots" on my MRI, but he didnt say they were lesions in the medical report that he sent to my regular doctor and eye doctor.
The opthamologist said that it IS optic neuritis. I even saw a second opthamologist a couple of weeks ago because my other eye hurt (turned out to be eye strain and sinuses bothering it) and he checked my bad eye and pretty much confirmed that it's optic neuritis. At that time I had the afferent pupillary defect. I dont know if I do now or not. My dad (a nurse) said that it looks like my pupil is moving normally...said it's a little slow, my dad thinks that might be a sign that it's healing.
It feels like it's getting better. I just wish the color vision would get better quicker. I'm a crocheter and love to make stuff with all sorts of colorful yarns. Since this happened, crochet hasnt been that fun for me. All the colors look weird, and my focus is wonky, so I feel like I cant see well enough to do much crocheting.
The eye must be getting better, since I've been doing more crocheting (and learning how to knit) since last week.
I wish I were more qualified to comment on your MRI, but I am totally unqualified.
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