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Regular Member

Date Joined Jan 2012
Total Posts : 27
   Posted 5/18/2013 9:56 PM (GMT -6)   
This is my first time on the ms forum. I have commented on the fibro forum in the past, but i am new here. I have had health issues for the past five years beginning with trigeminal neuralgia. Meds have taken care of the severe pain to my teeth and cheek, but I continue to have atypical face pain. It starts with eye pain that eventually involves my cheek and sometimes my head. It will last for a week at a time. When I get hot it is even worse. I had a mri 2 years ago and neurologist said I had no lesions. I also have dizzy spells, get off balance to the right side on occasion, have lot of times of confusion, right foot tingling, RLS, blurred vision every now and then, and sometimes just have that something just isnt right feeling. I had not given any thought to ms again until my mom read about ms while waiting for my brother to see his neurologist. She seems to think I should see another dr, but I left the last neuro appt feeling like a hypochondriac. I guess my question is this... are my symptons indicative of ms and should I find a new dr? I think I need some reassurance that I am not crazy. Since my mri was normal the drs attributed most of my problems to fibro which may be the answer. Thanks for letting me ramble and for any responses. shocked

Regular Member

Date Joined May 2013
Total Posts : 51
   Posted 5/21/2013 9:40 AM (GMT -6)   
Hi, maezyaya, I'm also brand new to this site. One thing real quick, you may want to post your question with a more specific title. There may even be a thread that is already started that your experience falls under. Again, I'm new, but I think I saw a rule saying the moderators want us to avoid having general/broad titles that may keep our questions from being noticed.

Anyway, I'm also trying to find out if I have MS (I've been showing symptoms for about 16 months), and my story shares a lot of similarities with yours. Trust me, you're not alone, and you're certainly not crazy. Like you, there are times that I feel like a hypochondriac and it keeps me from sharing every detail with my doctors. It's like every time I explain a new symptom, it hurts my pride because I feel like I'm weak. Sometimes I wonder if everyone has these pains here and there, but I'm the only one whining about it. My family and friends always support me, but it doesn't stop the thoughts that make me wonder if all this is in my head. I know what you mean when you say sometimes you have the feeling that something just isn't right! Before I ever started seeing doctors, I would tell my wife that something isn't right. One time I even told her that if I ever died all of the sudden, I wanted an autopsy done, because I felt like several things were wrong all over my body. It's hard to explain it, but your body knows when things are going wrong, and it tries to tell you.

When I was diagnosed with trigeminal neuralgia I was having pains in my head and face that were worse than the migraines! The pain was focused in the corner of my right eye and radiated out along my cheek and jaw. It felt like someone was trying to force a spear through my eye! I went to the ER several times between neurologist visits because the pain was excruciating. Eventually I was referred to an ophthalmologist for two reasons. One - to look for delineation of my optic nerve (which he didn't find), and two - to find out why I was having this pain and watering in my right eye. My eye was constantly tearing up and tears were always rolling down my cheek. Turns out, I had a blocked tear duct, along with all the other problems. I was scheduled to have my tear duct cleaned out... which I think involved a miniature pipe cleaner. I was not looking forward to it, but I was tired of the pain. Luckily (if you can call any of this luck), before the appointment I blew my nose and this long snake looking thing came out. I know, it's gross, but everything that was stuck in my tear duct came out. One end was as hard as a rock and solid white, the rest was... mucusy. The pain in my cheek and jaw comes and goes, but the excruciating pain in the corner of my eye is gone! I can't think of any way a blocked tear duct is connected to trigeminal neuralgia, MS symptoms, fibromyalgia... but I also don't want to think my luck is so bad that I had all these things happened at the same time by coincidence.

I have many more similarities to share with you! Like you, my symptoms spike/flare up when I get hot (living in Florida is not a good thing). The bad thing is, I get hot for no reason at all. Eating a bowl of cereal, watching TV, working a jigsaw puzzle... I sweat doing anything at all. It takes me over an hour to cool down after taking a shower. I did 5-10 minutes of "manual" labor around the house the other day, and it looked like I had stepped into a shower with my clothes on.

Have you been told you have migraines? My migraines have been a lot better the past couple months, but at their peak, I lost vision in my right eye and saw flashing shapes. My doctors called it migraines with aura. I also frequently have blurred vision. It is like I can't keep my eyes focused on what I'm trying to look at, and I have to make a conscious effort to focus.

I also have times where I slur my speech, and have to talk slower. I feel like I sound drunk! I get confused and it seems like I don't have a short term memory. Several times a day I'll find myself in a room of my house and I'll have no idea why I'm there. My neurologist diagnosed me with level 3 absent seizures. It's apparently the kind of seizure where it just looks like you're daydreaming. I have episodes where I come to out of a trance and I have no idea where I'm at and what I was doing. One time I even got lost while driving! Isn't that scary? I snapped out of a trance and realized I didn't know where I was, even though I was still on a section of road that I drive EVERY DAY. I couldn't recognize anything even though I was in my own neighborhood. I told all my doctors and they don't seem worried about that. I just try not to drive... ever. I get so dizzy sometimes that I have to have a hand on the wall as I walk.

I frequently have numbness and tingling in my extremities, and pain in my neck and shoulders, along with pain from touching my skin. My joints are terrible. My left shoulder and both my knees are the worst. A rheumatologist told me I have fibromyalgia, but he said fibromyalgia is a sign of something bigger happening. I guess it's more of a symptom of something neurological happening.

I've had a lumbar puncture and multiple MRIs of my head, neck, and back, and everything has come back clear for MS, but my neurologist says he's certain I have MS. He said it can take 5 years or more to see the white spots on an MRI. One thing they did see on the MRI is a cyst on my pineal gland. All of my doctors (and research that I did) said that is a very "normal" place to have a cyst. Something like 20% of MRIs show a cyst there, with no symptoms. Thing is, I have symptoms. It was measured at 7mm a year ago, and a month ago they measured it at 8mm. I blamed picture clarity/resolution for a 1mm change, and didn't think anything of it. When I saw my neurologist he said the scanners can measure down to the tenth of a millimeter, so a change of one full millimeter is cause for concern. He said the cyst is adjacent to areas of the brain that control body temperature and something with hormones (I have to give myself testosterone shots a couple times a month and you know the problems I have with getting hot). For a full year the cyst was ignored... I cringe when I think that the culprit for all of my symptoms was staring us in the face this whole time. Even with that, the neurologist thinks I have MS, and he wants to repeat the MRIs every six months until the white spots show up, and also keep an eye on the cyst. One last thing, I recently had some evoke potential tests done, and I "failed" the part that tested the nerves between my brain and right leg. My neurologist said that's yet another sign of MS.

I know I'm not an expert on MS. My neurologist isn't even sure I have it, and he won't say for sure that I have it until he sees white spots on an MRI. Hopefully I've shared some info with you that will give you some avenues to explore as you visit your doctors. Last thing, when I started hearing "MS" from doctors a year ago, I was scared and confused because I knew nothing about it. Turns out, my wife works with someone that has MS and they're fully functional thanks to the medication. They only miss work a couple days a year due to symptoms flaring up. The sooner you get to the bottom of all your problems, the sooner you can start getting better! I sincerely wish you good luck, and I hope you get better.
"They don't think it be like it is, but it do." -Oscar Gamble
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