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Old 08-28-2008, 10:29 PM   #1
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Question First exacerbation - wierd symptoms?

Just wanted to share and get some opinions on my first exacerbation since I was diagnosed last year.

I've noted that my root foot hadn't felt "right" for about a week or so. I caught myself staring at it and wondering if it was tingling. (I guess if the question even popped into my mind like that I should of known it probably was).

Anyway, yesterday I woke up with an MS Hug mostly in my front chest. I get them all the time so I really didn't think about it. On the way to work it got worse, felt like I had to work at expanding my chest. Not really short of breath, but tight. After being at work for 15 minutes, I was walking down the hall when I suddenly had this feeling that I couldn't go on any more. I got a wave of weakness and lightheadedness, grabbed onto the nearest wall and started bawling like a baby right out of the clear blue. At that point I noticed that my right hand was shaking like crazy (which it did last year when I was diagnosed but not really since). I felt like I couldn't control or understand why anything was happening, but I was thinking clearly enough that I didn't want to walk though a huge group of coworkers to get to my manager.

When I did get to my manager I was pretty much in the same state, and was taken to the ER. During the neuro exam, (the part where they make you follow their finger with your eyes) I suddenly felt really dizzy, stated that I was going to lay back and burst into tears and horribly shaking hand all over again for no apparent reason (again). The neuro exam did eventually show that I have hypersensitivity in my right leg/foot. Neurologist recommended we treat it like an exacerbation. I was admitted for a 23 hour observation to monitor my sugars since I didn't do so well on steroids last time.

Later that night I started having pain in my front thighs, which is a new symptom for me. Not to mention I couldn't walk heal to toe for more than 3-5 steps without totally losing my balance (also new to me).

My thighs still hurt badly on and off and I'm still feeling the tingling in my right foot (and sometimes part of my left) occasionally throughout the day.

Is this a normal exacerbation? Do they normally come on suddenly or did I just miss the signals until the switch got flipped, so to speak? When I was diagnosed last year, it was a gradual buildup with the only major symptom being tingling and numbness in my legs. Any comments?

Oh, and just to mention, I am on copaxone which I take 6 days per week instead of 7 due to the lumps and bumps I was getting with everyday injections.

Thanks.

 
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Old 08-29-2008, 04:52 AM   #2
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Re: First exacerbation - wierd symptoms?

I'm sorry your having an exacerbation, Delilah.

Exacerbations can come on slow and build or they can come on suddenly, anything is possible with this disease. What you are experiencing with your exacerbation is normal for your MS. Each of us will experience this disease differently.

I hope your doing better soon.
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Old 08-29-2008, 07:53 AM   #3
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Re: First exacerbation - wierd symptoms?

Delilah008, I don't have an answer for you but I am sorry you are having to go through this. As Snoopy61 said, everyone with this disease has a different experience. I am sorry you are having to experience this and I hope you feel better soon.

Last edited by brclrk80; 08-29-2008 at 07:59 AM.

 
Old 08-29-2008, 08:51 AM   #4
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Re: First exacerbation - wierd symptoms?

Hi Delilah and welcome!
I am sorry that you are having a flare and like everyone on this board has posted to you. MS is different for everyone and how you experience your symptoms and flares may vary from others. You have come to the right place though and there is alot of people here that are ready to give you all the cyber support you need
Hugs to you
Tasia

 
Old 08-29-2008, 12:13 PM   #5
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Re: First exacerbation - wierd symptoms?

Thanks for the replies. I just wasn't sure what to make of my sudden symptoms. I'm still having ona dn off dizziness and pain in my thighs. The right side hurts more but pain on both sides comes and goes. It makes me wonder if I'm not somehow making this stuff up and none of it is real. (A pinch of denial I guess). I feel a little bit steadier on my feet this afternoon but still very much exhausted. I've actually had the thought that I should have a cane or something 'cause I've nearly toppled over once or twice after getting up from the chair.

Hopefully I'll keep feeling better as the weekend progresses.

 
Old 08-29-2008, 12:48 PM   #6
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Re: First exacerbation - wierd symptoms?

Delilah, what part of PA are you in? There are some really good specialists in the Phila Area...im originally from there. Also, what happened with the 24 hour watch they put you on? You were obviously able to get to a computer prior to 24 hours being up? Or did I misread when you had this happen, go to the ER and then type the post. I might have, my MS symtoms are raging this week. So forigve me if Im wrong.
But the reason I asked is, did you do solumoedrol at all? I know you said you didnt react well, due to sugars- did they put you on any infusions? Do anything to help you?

relapses are scary. No matter how you slice it- I hope you are feeling better soon. I hope we both are!
N
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Old 08-29-2008, 04:52 PM   #7
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Re: First exacerbation - wierd symptoms?

I live in south central PA. I've been seeing a neurologist from a large teaching hospital in this area. The 24 watch was mostly for my sugar. I'm already overweight but have never had and diabetes diagnosed. The last time I was put on steroids, I would wake up drenched in sweat, pee every hour 'cause I was drinking so much water, and eat just about everything in site. I gained about 20ish pounds.

They were just gonna give me a first dose of steroids and send me home from the hospital, but after he heard this he decided that I should stay to make sure my sugars weren't' going supremely high. Turns out they only got as high as about 280, which is high but not enough to warrant keeping in the hospital for the full course of treatment.

I was in the ER on Wednesday morning, got admitted by early afternoon, and was discharged late afternoon on Thursday. I'm gonna be on IV solumedrol for another 2 days and then a 10 taper. I already know my sugars are high 'cause I got up from a nap and my mouth is super dry and I'm all sweaty (great isn't it).

I just wish the pain in my thighs would go away. It comes and goes, and it hurts more after I've been walking for a bit, but I think I'm a bit steadier on my feet than I was even this morning. They did give me neurotin for the pain. I was given flexeril last year for similar back spasms and it didn't help at all so I told them I didn't want anything like that. The neurotin does help, albeit only for a little while before the pain comes back.

This is all kinda of scary. This is my first exacerbation since I was diagnosed and I never expected it to be like this. I never expected to totally lose it at work and not be able to control my hands, my emotions, or my ability to walk. My DH has seen me stumble and trip multiple times since I got home. This morning I even had to lean over and hold on to the floor 'cause I was sure I was going down. Part of me wants to believe that I'm making all this up, but I know what I really am losing my balance. Heck, I can still remember the 3 words they used to test my short term memory in the ER, but when the discharge nurse asked me for my birthday, I couldn't get the number out. I just repeated "4" about 3-4 times before I switched to "April" and then I could say the whole date. Things like that are scary.

 
Old 08-29-2008, 05:02 PM   #8
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Re: First exacerbation - wierd symptoms?

Hi Delilah..things like that are scary. No one can tell you differently. I dont want to make light of anything you went through, because Ive been there, too. ...but maybe it will help you to know the first excaberation is usually the scariest- not necessarily the worst, but youre just getting 'used' to this and finding out what its all about...its enough to send anyone into panic mode. I think some of what you experienced, espcially at work, the tears and the not being able to walk normally, was mostly anxiety and being terrified. Dont get me wrong, Im NOT saying its all in your head, but it might have seemed so much worse to you because you were so afraid...if it were to happen again, your first thought would probably be "Oh no, not again"

This is MS...and fortunately there are alot more good days then bad ones- but we have to keep it in perspective that at times, this stupid disease can backfire on us, making us weak and suspectible to crying, stupidity and rage. Ive expereinced all of the above this week alone! Excaberations usually mean that something is attacking our central nervous system. I dont think I read anywhere, are you on any DMDs? And if you are, is your doctor checking to see if you are on the right one, or thinking about changing it? And if you arent...and im not pushing drugs on you- you are aware that the purpose of doing the shots is to keep the disease from attacking, and therefore limit the number of symtoms and relapses (Excaberations)? It works for many people even if it sometimes takes awhile to find the right med and get it really built up in your system. I have had much success on Rebif. Just wondering. Im glad that the Neurontin is helping you. It does not help me at all, and ive lived wiht numb tingling hands and fingers for 2 years, quite painful at times....Flexeril, on the other hand does help me with muscle spasms which usually occur at night. So, we seem to have different reactions to very often prescribed drugs.

Sweetie, believe me when i say, this can be terifying, but alot of it is attitude. You cannot be afraid of what this tries to do to you, and instead have to really face it head on. I am sorry that you are having such problems with the steroids...please watch your sugars, as that is more important anyway..steroids might or might not help...the more you use them, the less they do help, so hopefullly this wont be necessary for you again for quite some time. Keep drinking, do what you have to do to stay hydrated.....and let us know how you are.

And, remember, there is always someone here who understands- and can sympathize..but its more important that you feel good about you. Keep reading and reseraching this disease- make sure you truly understand what you are dealing with. Knowledge really is power. Let us know how we can help.

Nikki
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Old 08-29-2008, 08:04 PM   #9
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Re: First exacerbation - wierd symptoms?

I've actually had increasing episodes of crying for no reason. As in I'll be talking about politics and I"ll burst into tears for no reason. Or I see a happy ending, sad ending, someone doing well or not...tears or outright crying. It's really something I've had less and less control over in the past few years. Even before I was diagnosed. (It's a complete 180 from when I was a teenager since back then I hardly EVER cried.)

I suppose it could have been anxiety, and the shakiness in my had did seem to correlate with my anxiety level. *shrug* can't really explain what my body does when I don't feel on control of it.

 
Old 08-29-2008, 09:47 PM   #10
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Re: First exacerbation - wierd symptoms?

Quote:
Originally Posted by Delilah008 View Post
I've actually had increasing episodes of crying for no reason. As in I'll be talking about politics and I"ll burst into tears for no reason. Or I see a happy ending, sad ending, someone doing well or not...tears or outright crying. It's really something I've had less and less control over in the past few years. Even before I was diagnosed. (It's a complete 180 from when I was a teenager since back then I hardly EVER cried.)

I suppose it could have been anxiety, and the shakiness in my had did seem to correlate with my anxiety level. *shrug* can't really explain what my body does when I don't feel on control of it.
Extremes in emotions (crying or laughing) are actually seen in some as a symptom of MS. Someone here may be able to name the scientific terminology for this. I experienced fits of laughter that were uncontrollable/not warranted for the situation at hand, but I have also experienced the same extreme with crying uncontrollably.

Keep in mind too that emotional disorders such as depression are also seen with MS.

Don't put too much pressure on yourself hun. Relapses suck, are scary, but stay strong, take care of yourself, get a lot of rest, good foods and liquids into you, and keep in touch with your neuro during this time.
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Old 08-30-2008, 04:17 AM   #11
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Re: First exacerbation - wierd symptoms?

Thank you for all your support. My DH is extremely supportive but I know he gets scared when he sees me tip over for no reason and doesn't know what to say. We're both hoping this will blow over in a few weeks like the last time.

I've mostly been sitting around the house, playing computer games and sleeping. We did take the dog out for a walk last night (which took 3 times as long as it should) and by the end my legs not only hurt but were incredibly stiff. It's a good thing I was with my someone 'cause I grabbed onto him more than a few times 'cause I thought I was going over. Kinda like the feeling when you've exercised your legs too much and they just won't work for you any more.

It really sucks that I just started my job a few months ago and I already am taking an extended sick time. I was hoping this wouldn't happen until at least a year from now so I could get better established. Oh well. I guess I couldn't get a better excuse than having an IV in my arm for a week.

I guess I can't rush recovery. Thankfully our finances aren't in dire stress right now. I'm hoping they won't be even after I'm able to return to work.

 
Old 08-30-2008, 05:23 AM   #12
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Re: First exacerbation - wierd symptoms?

Quote:
Originally Posted by Delilah008 View Post
I've actually had increasing episodes of crying for no reason. As in I'll be talking about politics and I"ll burst into tears for no reason. Or I see a happy ending, sad ending, someone doing well or not...tears or outright crying. It's really something I've had less and less control over in the past few years. Even before I was diagnosed. (It's a complete 180 from when I was a teenager since back then I hardly EVER cried.)

I suppose it could have been anxiety, and the shakiness in my had did seem to correlate with my anxiety level. *shrug* can't really explain what my body does when I don't feel on control of it.
Delilah, your episodes of crying is called emotional lability or a pseudobulbar affect. It is caused by the MS NOT by anxiety.

Your mobility problems are the MS NOT anxiety.

The shakiness could also be MS related: weakness and tremors also produce shakiness. If you were having trouble walking then you legs were probably very weak and it took whatever strength you could find to keep going. Again MS NOT anxiety.

Not being able to control your emotions and not being in control of your mobility is scary. Unless someone with this disease has had it affect their mobility they really don't understand what happens or how it feels.
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Old 08-30-2008, 09:53 AM   #13
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Re: First exacerbation - wierd symptoms?

Hi Delilah, and welcome to the site.

I totally agree with Snoopy that these are MS symptoms, not Anxiety. I think that if you think this is all in your head, or that it's related to anxiety, it will make you more anxious. That in itself will not help your MS symptoms.

I'm glad you have a great support in your husband and that you're able to take some time off work to focus on your health. I hope you will start feeling better soon!
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