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Old 05-05-2007, 02:17 PM   #1
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Might have MS

Hey everyone. I am a 19 year old male about to enter college in August. In 2004, I had a concussion playing basketball for a school team. That concussion turned into postconcussion syndrome and I had to miss about a year and half of school to let my brain heal. Fortunately, I did experience a complete healing by the grace of God, and I went back to high school and finished school in December of 2006. I am currently interning at a local church before going to college in August.

Back in January of this year after finishing school, I wanted to work hard to get in great shape in preparation for college. I began to run and lift weights, but I noticed that after working out, I would get real dizzy and I would feel a pressure in the back of my head. I at first dismissed these signs as just being out of shape, and so I pushed myself harder. The harder I pushed myself, the worse these symptoms got.

Finally in mid February, I began to experience these symptoms 24/7. I was dizzy all the time. My vision was wacky (I don't know how to describe it). I felt like the back of brain was being pulled downward all the time. I also felt weak. After fighting this for a week, I went to the doctor. I first went to an ear nose and throat doctor believing the problem as some inner ear infection. The doctor dismissed my symptoms as being a result from working out too hard and told me to see a neurologist if they continued for a couple more days. The symptoms continued and I went to a physician 2 days later. He spent 5 minutes looking at me and said I was having anxiety attacks. He didn't bother to do any MRI or brain testing. I knew that diagnosis was incorrect, so I went to see a neurologist 1 week later. The neurologist said I was just dehydrated and I should drink more water before and after working out. At that point, I was doing a little bit better (though I still had the symptoms and felt light-headed) and just gave up seeking doctor help.

A couple months after this, I went to see a new physician to get a physical for college, and I told him my symptoms (which I was still experiencing though they were not as bad when I limited my physical activity). He set me up with an MRI and a new neurologist, who I will see in early June. I took the MRI last weekend and got the results yesterday. I was told that the MRI spotted scar tissue in my brain. I wasn't sure what this was, so I looked online and found that scar tissue was just another name for lesions. I read that Multiple Sclerosis means "Many Scar Tissues."

I haven't actually met with a doctor yet to discuss what this means for me and what they believe the diagnosis is. This won't happen until June, which means I have about a month to speculate for myself what exactly the problem is. While doing my own research over the past couple months, I believe it's very possible I may have MS.

Here are some of the symptoms I've experienced:

1. Dizziness and light-headedness.
2. Extreme weakness (especially when I feel light headed and like my brain is being pulled down) which has made me afraid to even walk. I skipped going to NCAA tournament games because I was feeling weak and light-headed. I felt like I would faint if I just tried to walk from the car to the stadium.
3. My vision get very strange at times. I can see but it just seems like I'm seeing a picture of very small dots. I can't explain it really. It's just weird.
4. I've also decreased concentration and memory at times.
5. I have muscle twitches all over my body. I notice this the most when I lay down and relax. It doesn't hurt. It doesn't keep me awake. It doesn't even bother me but I do notice them.
6. I've had a white coated tongue.
7. I've felt constipated over the past few months and I can't really force out any stool unless it's right there are my rectum, and then it's diarrhea like.
8. I've leaked urine at night sometimes. I haven't fully wet the bed but some leaks out and I have a full bladder when I wake up. I also loss sensation of my bladder when lifting anything heavy. I.e. I'll feel a full bladder but don't feel it anymore once i lift something. I'll occasionally leak some urine when lifting or running (which I've stopped doing now).
9. I get cold hands and feet very often. Sometimes they get that numbing sensation.

I've also read some other posts on this forum and other MS forums, and so far I've seen that 100% of people with MS had some sort of head trauma earlier in their life. I've been hit in the head a few times playing sports, the worst of which was 3 years ago when I got postconcussion syndrome.

Another thing to note is that my MRI from March of 2004 showed up completely normal. There wasn't any scar tissue then. Now the doctor is saying I have scar tissue. I don't know how much or where, but apparently I have some now.

Over the past few months, these symptoms kid of come in waves, especially if I physically work hard. Strenuous physical activity seems to trigger these "attacks" and it takes several weeks for these symptoms to diminish, but the more attacks I have, the more the symptoms stay with me even when I'm not being "attacked" by them all at once and with much more intensity.

Right now, I feel very weak and it's a struggle just to walk. I don't have any confidence right now in my ability to walk any long distance of stand up for an extended period of time. The longer I stand on my feet, it seems like gravity just kind of "lets go" of my feet and legs and they begin to feel weightless. My brain also feels sore right now...like it's bruised or something and needs some time of rest to heal. It was also 90 degrees a couple days ago and I was working at the church began to feel out of breath and extremely weak just sitting down.

I have a busy summer planned with lots of traveling and then of course starting college in the fall. I'm moving several hundred miles away from home for college.

My question is does this sound like MS? If so, what can I do to get it under control before seeing the doctor a month from now? My symptoms do seem to get slowly (very slowly) better with extended rest, but how much rest is too much rest? How can I do any exercise when it seemingly aggravates my symptoms.

I'm still mentally capable of doing college work. I still read and do work for this church I'm interning at, but what concerns me the most (if I have these symptoms in college) is walking to classes and my ability to have a social life. I'm going to school is New England so if hot weather provokes these symptoms, then I should be ok with that for most of the year.

Thanks for reading and I'll appreciate any comments or advice.

Last edited by HunterforJesus; 05-05-2007 at 02:28 PM. Reason: spelling

 
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Old 05-05-2007, 04:16 PM   #2
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Re: Might have MS

You do have some of the symptoms of MS. Heat does aggravate it so you need to watch that. I had a few MRIS that came back normal then one with lesions, then a followup with more lesions then one where they remained stable. You might want to buy yourself a cane, you can buy one that will break down so you can carry it easily. Hoping the best for you.

 
Old 05-05-2007, 05:56 PM   #3
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Re: Might have MS

Hi, Hunter. The symptoms of MS are kind of like a laundry list of possibilities. People may have some symptoms in common and may not have other ones. The diagnosis is usually based on a combination of things -- just because you have brain lesions doesn't mean you have MS (even though it does literally mean multiple scars)! Even with the lesions, there is certain clinical criteria. That said, there's certainly something going on and the goal is to find out what's causing it.

I'm surprised they didn't give you a little more information as to what they suspect it might be. Assuming it was your doctor (I HOPE it was!) who gave you the results it would probably be a good idea to call and ask some questions. You're understandably concerned so perhaps they can help get the neurologist's appointment moved up. Anxiety sure can make everything FEEL worse physically!

In the meantime, try not to go crazy diagnosing yourself. You already seem to know some things that make your condition worse so continue to monitor! Be conscious of what you eat and drink and see if it makes you feel better or worse. What I'm basically saying is to be aware. If you're into nutrition there is a lot of info. out there on the internet about things that are suspected to exacerbate MS symptoms. Whether or not you subscribe to any of these theories, DO drink PLENTY of good clean water -- dehydration is a really bad thing for the body AND the brain!

By the way, I never heard that theory about head trauma so unless i forgot something, I'm afraid I'm living proof that it's NOT 100%!

Good luck -- keep us posted!

 
Old 05-05-2007, 08:31 PM   #4
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Re: Might have MS

Hunter: First, let me say what a delight it is to "meet" a young man who would bother to edit his post for SPELLING! (I've been in corporate and government America for 30 years now - thought spelling and grammar were no longer priorities...)

As for your situation, it does seem that MS is a possibility. You've done considerable research, so I'm guessing you know it can be a long and winding road to diagnosis - MS or otherwise. I found myself in a similar place 2 years ago - although I was 48, not 19! I had one symptom (L'Hermitte's) that my research overwhelmingly suggested was MS-related. When I started researching MS, I discovered I had been having many other MS symptoms - though mainly sensory, nothing actually affecting motility.

I tend to be verbose at times, but I'll try to cut to the chase now: Neuro did not suspect MS, but was agressive in testing. 6 months later all else was ruled out, I met the diagnostic criteria for MS and got a dx (diagnosis). Started medication (Copaxone) Nov. 2005 and am doing very well these days.

What I want to share is that I did not share my research or "gut-feeling" with my neuro at first. I developed a relationship with her, I kept my mind open (even though that was tough at times). She was concerned about my sx (symptoms), she seemed to want answers as much as I did and she kept testing. When she finally said, "It's MS" neither one of us was surprised or stressed out. We got there together.

It does seem you have some neurological issues (in my opinion). Work with your doctor(s). Don't let them shut you down. If you feel dismissed, replace that doctor. But please, don't diagnose yourself. And PLEASE, don't sell your body short. Sounds like you KNOW Who made your body, and exactly Who is in control. Each day, when you wake up, you do have the choice to turn your thoughts to the potential limitations your body may encounter. You also have the choice to tell the devil to get behind you. Not just the CHOICE, you have the AUTHORITY to send him packing. DO IT - and BE the vital YOUNG MAN that God made you.

Looking forward to "talking" more, Hunter!

 
Old 05-06-2007, 07:48 AM   #5
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Re: Might have MS

I've also read some other posts on this forum and other MS forums, and so far I've seen that 100% of people with MS had some sort of head trauma earlier in their life.



Just wanted to let you know, never had any kind of head trauma! I wish you well, you sound like you are on top of your diagnosis, whatever it may bring. Keep us posted on what you find out..

 
Old 05-07-2007, 04:18 AM   #6
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Re: Might have MS

This is interesting since I am in my 50's now but when I was 16, I was involved in a serious auto accident had major head traumas and was hospitalized for one month, since I had lost my balance etc. Now I have MS too.

 
Old 05-07-2007, 12:07 PM   #7
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hereinwi HB User
Re: Might have MS

I also agree that it is interesting because I had a very serious car accident when I was 17. We were the 2nd car out of 13. I cracked the windshield with my head. I remember my dr asking if I was in a car accident or had head trauma but I don't know if I remembered to mention that since it was so long ago.

 
Old 05-07-2007, 01:49 PM   #8
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Re: Might have MS

This is a theory that pops up here from time to time. It is pretty clear from these and past replies that some of us had head trauma, others did not.
I've never been certain which side I should fall on - my head is hard as a rock and I've had at least 3 injuries that doctors said SHOULD have knocked me out (in addition to bleeding and such) but didn't!
But it is interesting!

 
Old 05-07-2007, 02:10 PM   #9
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Re: Might have MS

not dx'd with MS yet, but neuro is 95% sure it is, we are just waiting it out for now. go back on May 24 for a follow up.

but, this is an interesting topic with the head injuries. i did have a head injury that i never told my parents about or went to the doc when i was about 10 or 11. i slipped on the driveway and hit the back of my head full force. i'm so thankful that nothing came of that, because i remember how bad i felt after it happened.

very interesting
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Old 05-07-2007, 06:12 PM   #10
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Re: Might have MS

As I previously mentioned, I had no head trauma but now that talk has gone a bit further I'm going to say something that you'll all probably find wacky! Feel free to chalk it up to my vivid imagination and inquiring mind but since my symptoms were for the most part dormant for 30 years, I can't say I haven't considered if a bad injury 4 years ago kind of "woke this up". I'm sure that every doctor would say I'm crazy (not that it's worth bringing up since it serves no purpose) and that most (if not all) of you will too, but there is SO much about this disease (or is it syndrome? ) that NO ONE knows!

 
Old 05-07-2007, 06:25 PM   #11
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Re: Might have MS

Bearygood, thats not crazy at all. In fact, never having had any head trauma- one of the first questions I was asked was if I had had any recent traumas in my life...a death of a loved one, etc...
The truth is, about the same time my hand started, I had just found out my husband of only 3 years has a type of lung cancer called Silicosis. My husband was on the 911 job and breathed quite a bit of that toxic dust. (hes in construction). To this day, they still think but cannot prove, that there might be a correlation between the shock to my system and the waking up of my MS which also had been dormant for close to 15 years....at least, thats the last time I can remember every having anything remotely close to an MS symtom!
not crazy at all...
Nikki

 
Old 05-07-2007, 06:47 PM   #12
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Re: Might have MS

Holy, moly, Nik! You have been THROUGH it, girl!

I'm somewhat amazed that you've been told by a traditional doctor(s) that they would consider that. At the very least, nice to know I'm not being crazy by myself!

I have consistently read that brain lesions can be caused by physical OR emotional trauma -- thing is, that's sort of off topic since supposedly MS causes brain lesions, not the other way around. However, as much as is known about MS, it seems like so much more is NOT known so I wouldn't be shocked if one day the opinions on this (and other things) change.

 
Old 05-08-2007, 02:33 AM   #13
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Re: Might have MS

Nikki, I haven't told you before, but I really am very much in awe of your spirit - you truly have / have had a mountain of troubles, yet you are here for all of us! I think you are the of the board!

The thing about trauma triggering an attack: That was VERY obvious to me. A little over 2 years ago I had what I call an "emotional meltdown". (Won't go into detail, but it was VERY BAD.) I remember the exact date, because the only reason I pulled myself out of it was that my sister was coming to visit me the next day. While I was very depressed and distraught, I tried to act "right" for my sister.

Shortly after she arrived I was sitting on the edge of the bed and bent down to pick up my new puppy - my legs suddenly went numb. I sat up quickly and my legs were fine. But it kept happening, and got much worse, ended up going to the doctor about a month later. I told each doctor I saw about the "meltdown" - it sure seemed to me it might be related. That was the start of my diagnostic journey.

 
Old 05-08-2007, 04:32 AM   #14
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Re: Might have MS

Lilc,
Little Secret- this board keeps me sane. I dont think Im anyone's angel (but thanks!) and yep, I have been thru quite a bit...however, if its true that HE doesnt give us more than we can handle...HE aint done with me yet!! Im still handling...lol.

My mountain of troubles, has also had its rewards..you know, graduating Summa *** Laude in March, being able to prove to myself that not only did I survive school, but also graduated top of my class.....bunch of other stuff has happened which I dont think I would ever have appreciated until I actually had to deal with MS in my world....you must remember, when I first started on this board, my fears, insecurities, etc? YOU were one of the people who helped me get thru it...now,Im trying to do the same for others....

As for your trauma, I can only imagine...but there you have it~ another example of how the brain can bring on all kinds of things...that being the case, lets start hoping that we can find a way to really make "mind over matter' work and all of us can have a great year just by thinking positively...right?

Its a great club we have here....and I, for one, couldnt have gotten this far without you all..
thank you.
Nikki

 
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