Hi, I'm new here. I just want to say that I haven't been officially dx'd yet, but I think we're heading that direction. Waiting on an MRI at the moment. Based on a few things the doc said as well as the symptoms I'm having, I'm leaning towards MS at this point. I think the doc is too, though she wouldn't come out and say it.
Quick history. I am 31 and have 6 kids. I'll be married 11 years next week.
Recent issues that have been causing concern... I developed numbness in my outer left arm, affecting my pinkie and ring fingers. It's that feeling like when your arm falls asleep, and you know it's asleep, but you don't want to move because it will wake up and be horrible pins and needles. It's like just before the pins and needles. I thought at first it was an old injury resurfacing, as I'd compressed the nerve in my elbow several years ago due to a fall in the shower. Within a few days, I started feeling numbness in the outer edge of my left leg (knee down), as well as my left cheek. I have a history of migraines, but hadn't had any in a while.
A few days after the numbness in my face and leg started, I started getting pre-migraines. I could feel one coming on, but it didn't get too bad. Now they're getting bad, along with a lot of pain in my arm and other areas. I've also been feeling like there's a tight band around my head, and I'm unsure if it's related to the migraines or something else. The other night, it felt like someone was digging around in my brain, massaging it or something. Just a weird, crawly feeling is the best I can explain.
I was at the neurologist yesterday, and she had me do the heel to toe walk down the hall. I could barely do it. I didn't know that my balance was that bad. For years I haven't been able to walk in a dark room without falling over, so I knew my balance was off, but this was different. I could see just fine, and still couldn't keep my balance. It was a bit disconcerting.
I know that without an MRI, I won't get very far, but I was wondering if anyone had dealt with similar symptoms? Can anyone point me in a direction? What happens if they do or don't find lesions? What's my next step?
Welcome. If your neurologist sees MSers, then you are doing what needs to be done. If there are no lesions found, then you would likely need to repeat the MRI in another 6 months. Lesions might not be visible if your MS is in the early stages. 6 kids might have hidden earlier symptoms of MS or you might not have anything.
It is important to relax and try to avoid stress. If you do have MS, you will need to help your kids realize that Mom is still Mom.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I don't know if my neuro sees MSers specifically, but I assume she's dealt with it a bit at least. I am trying not to stress, but you know how it can be sometimes I'm sure... the uncertainty of not knowing why things are happening. I've been here before with other issues, waiting for a diagnosis, and it's not a fun place to be.
Hi Redwonder, just wanted to add my hello and welcome....
Sorry to hear you are going thru this. It is very possible that you are facing MS dx, but until you have that MRI, its going to be a tough call other then to say its safe to probably expect this to be neurological in some aspect...
As Jayhawk, said, having had 6 kids, you might have masked your symtoms....pregnancy and elevated hormones, definately puts MS into remission, most people report feeling great while pregnant, especially MSers! So, this MRi will be telling...
Meantime, do your best not to stress...and I hope you find relief with your tingling. I have it too, also in my left hand and fingers...and the recent heat wave we are having has excaberated it...this week hasnt been much fun.
That would make sense, if the pregnancies masked the symptoms. I've had mild suspicions for years, but never enough to pursue.
Another question I've come up with.... I've noticed that a lot of people seem to be heat sensitive. Is this something that is related more to a specific temperature, or is it more of a certain amount of temperature above normal? I am normally a very cold person, my body temperature on a good day is nearly hypothermic. So when I get in a hot shower, it doesn't affect me too much. Though lately I've noticed that hot, and especially humid weather seems to affect me a lot more heavily than it used to. I also seem to get very sleepy in the afternoon, to the point where I'm just about dropping I'm so tired.
Hi redwonder - I was recently diagnosed with MS. The first onset of symptoms for me was a bilateral loss of my vestibular system (or my inner ear function). I know all to well what you are going through with the loss of balance and how frustrating it can be. For me, I have no inner ear function, all of my balance function falls to my eyes and my brain to compensate for the loss of inner ear function. I can no longer drive at night, am not able to swim the way that I would like (yet) because I when I go under water, I can not tell up from down and have trouble walking without looking like I spent the day belly up at the bar.
I have constant feelings of brain slosh and bobble-headedness. I'm not sure if that is anything like you feel with the band feeling on your head or not. You might benefit from a neurotologist (specializes in balance issues). It may be that you have the "usual? balance loss that many people get with MS. I've been told by more then one doctor that my situation is unique and unusual so I am not suggesting you have what I'm going through, but having an explanation of why you feel the way you do can be very helpful.
The next symptom I had, about a year after my vestibular loss, I began getting the pain in my upper arm, sort of like a soreness after you get a shot. That progressed into tingling and numbness in my hand that unfortuantely, has only gotten worse over time.
I hope your doctor is able to provide you with a diagnosis. I went through almost 14 months of trying to get answers. After finally being told that I had MS was a huge relief. Most people are not happy to be told they have a life long disease, but it was finally an answer that I could deal with and move forward.
Best of luck to you and I hope that you feel better and get the answers you need.
If you are noticing when you are having problems, you have already determined triggers that affect you. You can learn to avoid these triggers and diminish the problems. Whenever I need to sleep in the afternoons and I am home, I definitely take a nap and sleep until I wake up. I realize this is difficult to do with 6 kids, but you will need to find time to do this. You cannot be there for your family if you are not "healthy".
Summertime can be a bummer. I hibernate during the day during the summer between 10 and 4. I also have a passive cooling vest and if I have to go out, my vehicle is on ICE COLD on the Air Conditioner.
If you do have MS, you can learn what works for you and what to avoid. Your position as Mom need not change. The roofing contractor for my house finally got his wife a MS diagnosis. He also got her a power chair so that she could keep up with her 6 kids and their activities. Remember, if you have MS, you have to learn to use what works for you.
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
You askd if heat sensitivity is due to a specific temperature....I think the answer is no. Most of us who are heat sensitive, find that when our bodies get overheated, whether it is from hot water (shower or bath) or over exercising, or just plain hot temps- we get dizzy, disoriented and our symtoms seem to explode! In the old days, they used to throw people into a hottub to see how they reacted, and that was considered a "test" for MS!!!
If I were to get into a hottub, Id never get out, they would be pulling me out with a lift!
I tend to run cold, too..meaning, when everyone else is hot, im comfortable, when everyone else is comfortable, Im freezing....but here, on the East Coast, our humidity is worse then anywhere else and humidity can do me in! Im in sales, and Im in and out of the car all day....the few minutes it takes to walk from my car to the building can wipe me out! I also wear cooling vests and cooling hats when I can, but its kind of hard to do that and wear professional clothing at the same time...but I keep an ice pack in my car and wrap it around my neck as often as I can when I get back into it....
You have to really pay attention to what your body is telling you and start taking notice of when things just seem "off".
In the old days, they used to throw people into a hottub to see how they reacted, and that was considered a "test" for MS!!!
Wow, that sounds real scientific there
I have noticed that when I am in the hot tub for a while, I tend to feel a bit tired. I usually just try to get out before that. I can last a while, but it takes a while for me to feel overheated. I try to take what I call power naps when I can, too. I will lay down for no more than 45 minutes. Otherwise I get too hot and sleep for several hours and feel worse than when I layed down. I tend to feel nauseous and fuzzy in the head if I lay down too long. I don't know if that's something that's associated with MS or not. I guess for a number of years I've learned to avoid certain behaviors in an attempt to keep myself 'normal'. I tend to naturally compensate without even thinking most of the time.
With the dizziness, I am fine with my eyes open, unless I'm trying to do the balance beam walk. If the lights go off in a very dark room and my eyes haven't adjusted yet, I usually fall down. If I close my eyes, I feel like someone is pushing me down and I will fall after a little bit. Thankfully I can still drive at night, but only in well lit areas when it's dry. If it's raining, forget it. I can't see the lines for anything. My night vision has been horrible for years though. I just compensated by not driving at night unless I had to, and definitely not if it was raining unless I was going the mile to the store on well lit roads.
Makes me wonder if I've been compensating for a lot more than I realized...
Sounds like you have been overcompensating for a very long time! But, with your life, its no wonder. Who can blame you? We women do what we have to do...Actually, you should be proud of yourself. The number one thing about having MS (if you have it) is mind over matter! Thinking positively and being proactive, goes much further then anyone really believes....because it isnt a fatal disease and because it IS chronic, we have to learn to live with it, and doing what we can to both ignore and deal with it is actually healthy!
The eye sight thing is probably related and not at all unusual. The balance thing is the number one complaint of MSers, but its right up there with fatigue! You being who you are, probably wrote the fatigue off to your life in general and ignored it. Knowing that your night vision was off, you just "dealt" with it (again, healthy!) and didnt make a huge deal out of it. The balance thing, isnt that funny how we all encounter that at one point or another, but none of us paid any attention to it, until we were forced to actually look at the issue? I remember how I used to trip over the rug, and people would joke and say "first day with the new shoes?" But in reality, I was tripping wearing flat shoes, which I had owned forever! I had no idea why the heck I was tripping. I also had absolutely no idea why I could take a shower and go to blowdry my hair, something I have done for more then 30 years, and all the sudden be a puddle on the floor, crying and dizzy and feeling like I had the flu!!! All of this became alot clearer to me when my first MS doctor did a history and physical and asked THE RIGHT QUESTIONS! Explains why those 50+ lesions in my head are actually a problem, and not normal, doesnt it?!
We learn to deal with this....we learn to pick our battles with MS, and know when to say NO to things which push us too far. We learn that there is nothing we CANT do, as long as we plan our days/ nights and hours to compensate for the time we choose to push ourselves. Im still learning!
Its wonderful to have you with us and sharing your experinces with us, thank you. Its also really good for you to have us to vent to. No one will understand what you are going thru more then we will. Always remember you are not alone....
Thank you for having me here I do have a little support on my large families board (I'm a lightweight in the kid department ), and one of the ladies was diagnosed with MS just a few weeks ago. Her and I have been talking, which has helped. She's still dealing with the emotions of it herself. But, it does help talking to others.
I'm really trying not to get too worked up one way or another, but the more I look at all the symptoms together, the more I think maybe there really is something too this. I know I could be dealing with much worse, too. It's frustrating, because of the nature of it, there are so many things that can be easily explained away for various reasons. The interesting thing is that I can track at least some of my balance loss back to 7th grade, I stopped being able to shoot free-throws in basket ball. I remember thinking it was odd, but never got anywhere with it. It was so minor and weird I never worried about it, but it was always in the back of my mind. I had an MRI or two after that time, but they never mentioned any issues that I recall. But then again, I've been treated like a hypochondriac on more than one occasion.
Unfortunately, I too often run into issues with my health that are unexplainable. I have Lichen Sclerosis (skin condition), which went undiscovered for 10 years. I had one doctor tell me I was frigid and that I needed to go home and relax. Did wonders for my marriage Thankfully my hubby is a pretty amazing guy, and after a diagnosis a few years into our marriage, he understood some of my behaviors. It still hurt him, but he stuck around when many other guys would have bolted. Then the low body temp, which no one can explain and no one will listen to me when I have a high fever of 98 degrees. I don't get much higher than that unless I'm really sick, and then I really feel like I'm dying at that point. Of course now, I wonder if that's related to the overheating issues that some people experience. It affects me far more than it seems like it ought to. Especially when my kids get 104 fevers and are still happy crazy monkeys. And all the other random things that I'm told things like "huh, we've never seen that before, we have no idea what's wrong with you". Yeah, I get that a lot Lol, such is life sometimes, right?
Anyway, thank you all for your support and ideas. I still have to wait a little over a week for answers, but at the very least, I managed to get them to move my MRI up by a week. It's next Thursday, with results being read on the following Tuesday. So just a little over a week and hopefully I'll have some realistic answers. Until then, I'll be reading lots and looking for various answers.
I'm reading up right now on fatigue. I have noticed on occasion that if I'm doing anything physical, no matter how much energy I start out with, I tend to get tired a lot quicker than I think I should. Walking long distances, I feel worn out, like my legs are burning almost. I don't seem to drag my feet or trip up. It feels more like I'm out of shape. Which I probably am to a degree, but at the same time.... Even cleaning wears me out sometimes. I'll hit a brick wall after a bit, and I haven't even cleaned all that much. I just want to sit down or lay down. Mopping is probably my least favorite for that reason. Some days I can do more than others, and I do try to take advantage of those days. They seem to be further apart than they used to though, now that I think of it. I've also had sleep issues for a long time, but only take sleep meds when I'm not nursing or pregnant. Makes me wonder if I really do want to be getting pregnant again any day soon. I still want more children, but at the same time.... The only thing is now, I was recently told to get off the b/c I was on because of my history of migraines. Apparently there's an even more increased risk of stroke. Oh, great. Someone could have told me that sooner Lol, that's why I don't like to trust docs much anymore. Not only are they regularly wrong, they aren't even all on the same page. Give me my chiropractor any day
Redwonder, you brought up allot of good issues in these two posts. First of all, no thanks necessary- thats what we are here for. Secondly, you mentioned reading too much. Im going to be honest with you. Most Neurologists will actually tell their patients NOT to read anything on the internet. Very simply there is too much BAD information out there. The net isnt monitored, anyone can post anything or sell anything or make any claim and someone will believe it. I honestly think boards like this, with REAL people sharing REAL experiences is your best bet to learn from....if nothing else, it gives you questions to ask your doctor. But, you dont like doctors! Be alerted too, that Chiros are NOT recommended for MS patients...pressing on the nerves can cause significant damage, bring on relapses and cause all sorts of permanent problems- Chiropractors should be avoided if you find out you have MS...
Now, onto the fatigue that you did read about. It might be that you actually read some GOOD information! (Hopefully you read it here?). MS has two significant complaints...the first is Fatigue, the second is balance issues. Fatigue comes on, especially when we do physical activity. For myself, its triggered by heat and humidity. I live in one of the most humid states in the country and even when I visit the Carribean or the Arizona desert, where it is even hotter then it is here, I find it more to my liking (more to my MS liking) because there is virtually no humidity! House cleaning is a physical activity. Walking, carrying around the kids, pushing strollers, even just carrying laundry up and down the stairs is all physical! And, even me, who is in great shape and tries to work out daily, has my moments at 7 pm, after a full day of working and running around, trying to get errands done and dinner on the table, of complete and utter exhaustion! Summer months are worse then winter months...again, heat induced. Blow drying my hair can exhaust me- heat induced. The only answer is to keep the body temperature cool, which is why swimming is highly recommended, for me to take cool showers and cool down my scalp and back of my neck- and to wear cooling vests and hats which keep my head cool.
Just an FYI, MSers often complain of migranes. I myself, suffer from them off and on. I use a product called Migranol to help ward them off- its a nose spray. It is true that b/c can bring them on, but I did away with b/c pills just like you and still had them. My neurologist thinks its MS related. You should really talk to both a Neurologist and a GYN about this before making any decision. Unlike you, more kids were NOT in my game plan, so it was easy for me to take permanent action, but in your case- Id be hesitant to do anything that is going to make your decision for you; including getting pregnant or not being able to....you dont seem to be at a point where you want either decision to be made FOR you. With all the respect in the world, Id say consult more then one person before making changes.....(of course if you do get pregnant, youll at least feel great again for a few months!)
Tough place to be in...so continue to vent away to us. Remember that MS is manageable- its not going to kill you, it will cause you to make some changes and be more aware of your body and its ability to function on the same level as you want it to..but you can do it! Youre already superwoman in my book!!
Im really happy to hear you got your MRI moved up. BE SURE TO ASK FOR A COPY OF THE FILMS BEFORE YOU LEAVE and then ask your doctor to give you a copy of the report when you see him for the results. You want to start keeping a file of all these important tests. Believe me, somewhere down the line, someone is going to ask you if you have this, and it will be so much easier if you already do. Just yesterday, my eye doctor asked me to bring in a copy of my latest MRI so he could see for himself if there is an explanation for the pain Ive been having. Start a file of everything you can get your hands on and keep it where its accessible. Unfortunately, your journey has just begun and more tests are in your future....
But we will be here for support!
It's funny, thinking back, I actually had less migraines on the b/c than before. It was my 'off' week anyway, and we were planning on me going off in the next month, so it's nothing that wasn't in the works. Just moved up a bit. I am back to charting my cycles again though, so we will be trying our best to avoid for the time being. I'd rather not do anything permanent, and really didn't want to be on b/c in the first place, but, it is what it is and I'm happily off now
I'll have to keep that in mind about the chiro. He is pretty good about putting me back in place, and was a life saver when I developed SPD in my last two pregnancies. I wouldn't have been able to walk if it weren't for him. But, I definitely don't want to make things worse, either. I did notice with this numbness that it didn't get better after seeing him. I don't want to say it got worse, because it didn't seem directly related to anything he did per se, but it did seem to keep progressing as opposed to disappearing like usual, so hard to say. I did see him 2-3 times before I went to the doc though.
Thanks for the info about getting copies. I will have to try to remember that. I've tried to start keeping a little diary of my symptoms, I had a feeling they could be important. I should write a note about getting the copies, too.
I wouldn't say that I don't like doctors, just the ones that don't listen Unfortunately, I seem to find all the ones who don't listen, and then whenever I do find a good one, I cling to them for dear life They all think I'm nuts though anyway, we're 'those' people who don't vaccinate and try to treat things naturally whenever possible. Thankfully, most of the dr.s around here have been quiet about our non-vaccinating choices, but every once in a while I get the 'look'. Funny thing though, our kids are healthier than most of the other kids I know
I'm trying to stick to the main sites that just list the symptoms, but found a reasonable looking site that had a lot of info and personal accounts. I don't remember the site and I'm not on my own computer. The page color is a salmon like color, if that helps. There were a lot of breakdowns of the various issues associated with MS, which seemed to help me understand it at little better. Some of the mainstream sites will give so little information it's hard to know what I'm looking at. I will probably slow down over the next few days though, I don't think there's much else to look at. But, it is interesting to read about at least
Redwonder, Ill be sending you prayers of strength and waiting to hear how your MRI goes and the results...I think you are smart to keep your journal and notes- and be able to talk to your doctor about all you are experiencing...and yes, add keeping records of tests to your to-do list.
Dont jump to conclusions about your chiro yet...it was just FYI so that you can talk to your Neuro about it if he suspects MS.
As for the other sites, Im not interested in where you read anything, I just wanted to put it out there that NONE of them are monitored by anyone other then their own company representatives, and their is more bad info then good info overall.....you have to be smart and realize that certain internet sites are reputable and many are not. The National MS Society is always a good refernce to go to, as are all WebMD sites. Its the ones which are trying to "sell" you anything, which you should steer clear of and the ones which quote statistics, without showing you where the information came from, which you should question. All trials and clinical reports are always available if you know where to look.
Right now, you need to take the weekend and relax and give yourself a break. Its wonderful that you are trying to educate yourself, but dont forget to take time for yourself and not allow this to overwhelm you! Youre in a great position to sit back, wait for your test and see what it shows. Enjoy this time of knowing that you are on the right track to getting answers. Dont try to put the cart before the horse, so to speak.
I agree, some websites are worth avoiding. I do try to keep that all in perspective. I'll check out the National MS Society page too, and at least bookmark it. I think at this point, I've read about all I can really read until I find out more information for sure one way or another.
So, I will be relaxing this weekend (as much as 6 kids allow), and focusing on some other things that need to be finished up. Lots of activities going on this week
Okay, new question.... I know I know, I said I'd stop reading Lol, had a thought though. Was reading about MS fatigue on WebMD, and it says that it usually gets worse throughout the day. That's fairly true for me, usually hitting the worst around 2 pm on the days that it does hit me (though I seem to go through periods of time when it's not as bad). However, there are a number of nights where my energy picks up at about 9 pm. I've been avoiding soda after about 3 pm most days (I try to keep it to one soda on any given day to begin with), but even on my non-soda days, I end up with this energy burst around 9ish at night. Is this unusual for someone with MS, or is it common to get random energy rushes? I have always been more of a night bird, so I don't know if that has anything to do with it or not. It's also the time of night when things are the quietest, so maybe that has something to do with it
Think of the fatigue as an overdrawn account. You only have so much energy available to you and the total amount can fluctuate depending on your MS. I remember sleeping 18 hours straight and waking up to find I only had 2 hours of energy.
You have to bank your energy. Before an event, such as a party, wedding, trip etc...I have found that if I start resting 2-3 days before the event and at least a day after the event, I do well. Remember too that emotions can sap your energy reserves. Any kind of stress is like a hole in a bucket.
On the worst of days I use a power chair indoors so that I can bank my energy for more meaningful events.
Again, fatigue is really based upon your specific MS. Triggers, such as temperature, weather (low barometric pressure), etc. can also affect the fatigue factor. Like with all things MS, there are aspects you can control and some you cannot. You have to learn what works for you and to not let anything get you down!
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Totally agree with Jayhawk about learning to bank your energy and do what works for you. As previously mentioned, this disease is so individualized and its never the same for long- so what works one week, might not the next. I think youre smart to keep track of what you know about your body and try to figure out patterns.
Youre gettting there!! So go relax! Ive got 700 pages of reading to do (Phd program) and a paper to write. I can only WISH for a day off!
I will definitely have to keep that in mind. I will probably need to take better advantage of my less tired times too.
Today was a bit rough.... I was out getting groceries, by myself thankfully, and as usual got tired and overheated in the checkout line. It's always in the checkout line too, that's been going on for a few years now. I can shop for 10 minutes or 2 hours, and nothing hits me until I'm actually checking out. I just get really tired and hot and uncomfortable, and can't concentrate. Don't know if it's related, but it's sure annoying. I felt more sluggish after shopping too, and just wanted to come home and lay down. Not happening of course, but it's a nice thought
I talked to my mom this afternoon too. She knows that I'm at least looking into things, and looked it up herself (I got my love of finding out information from her ), and said it seems a bit too close for comfort as well. She also had an ear tumor a few years back, and was wondering if that would affect certain things. There are a few minor similarities, but not enough. She also has chronic fatigue, and gets pretty tired herself.