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Relapse or just continuing symptoms?


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Old 12-16-2010, 09:44 AM   #1
ertli
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Relapse or just continuing symptoms?

Hello - I was diagnosed with MS on 11/7/10 (age 46). I did have an episode of Optic Neuritis in 1993 that was treated with a course of Prednisone. No further tests were done at that time. I was told that if I had an occurrence, they would run further tests. No real symptoms (some small now that I look back), but they were easily explained, etc. On Oct. 30th I awoke with numbness from the chest down and what turned out to be the “MS Hug” that really concerned me as I had not heard of it. When it progressed, I went to the ER and was admitted to the hospital and diagnosed. I was treated with a 5 day course of IV steroids that didn’t do a lot for the symptoms, but caused a lot of difficult side effects. I have been improving and still have a lot of numbness and tingling in my hand, but in the beginning, I could hardly use my hands. My doctor thinks that the Optic Neuritis might have been a flare from MS and feels optimistic that I have probably had it for 17 years and done fine without any treatment. On 11/30 I had a follow up with my neurologist and all of the numbness and tingling from the waist down had subsided. I have been taking the Rebif injections since for about one month. On Sunday, I began to notice some of the tingling/numb sensation returning in my legs. It has not progressed, but I think I might be causing it to be more noticeable due to anxiety thinking it is “starting again” and will continue on to the full attack I had in November.
I guess I am hoping to find out if this is normal (although nothing really seems to be normal with MS), but does it mean a new full attack is coming or do the symptoms just come and go. Once I have experience with this illness, I hope I will be less likely to become paranoid about sensations, but right now, just don’t know what to expect.
Sorry this is so long and I appreciate any advice. Thank you!

 
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Old 12-16-2010, 10:57 AM   #2
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Re: Relapse or just continuing symptoms?

As you live with MS, you will find out what is normal for you. You might consider a journal to track your symptoms and problems. This is beneficial to your neurologist as well as to yourself. As you review your journal, you will discover much about your MS and how it relates to your life.

You can also discover what some of your triggers are. For example, temperatures affect me on the high and low end of the thermometer. Above or below my optimal range, and I have immediate problems. I can control this trigger if I am careful. Thus, if I can control this trigger, I can avoid the "event" and I can enjoy one less MS episode.

As you gain experience with MS, things that might bother you now will become "old hat". I remember how shocking the first MS Hug was. Now, it is nothing but an annoyance.

Stay strong stay positive and WELCOME!!!
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Old 12-16-2010, 01:10 PM   #3
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Re: Relapse or just continuing symptoms?

I agree with Jayhawk that "normal" is anything but.....what is normal for some, is not for others.

I had a similar experience to you. I was 31 when I first had ON and no one even spoke to me about MS....at 37, I woke up one morning with completely numb hands and fingers and wound up being dx with MS in less then 24 hours. My doctor thought it was a pinched nerve...fortunately, the CT scan for that, led to a Neuro consult with a very savvy Neurologist!

Never the less, heres the good news. almost 6 years later, Ive been on Rebif since the start, no new lesions, no new attacks, no missing of work or school (im in grad school) and my life is pretty much stable.....heres the bad news...the tingling, burning, numbness never went away. At times, I think it has subsided for a bit, only to return the first time I am stressed, experience a change in temperature..(air conditioning, heat and humidity do it every time!) Ive had some new symtoms, but nothing that has taken over my life....in the end, i dont think Ive ever really found relief from the hand and finger numbness, I think I have actually learned to live with it, and only when its "really bad" do I feel the pain anymore.

This, is my normal....

I love Rebif and hope that youll be telling us successs stories like I often tell over the next few years...
I want you to realize that stress and anxiety of dealing with being newly diagnosed, is normal, and can bring out all sorts of strange feelings. Youre also so much more "aware" of your body then you were before all this, that everything and anything, is going to seem massive to you. This too, will subside as you get used to this disease. Sounds like you have a handle on it and you are hanging tough! Good for you!
If you need us, we are here!
Hugs to you..
Nikki
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Old 12-16-2010, 02:25 PM   #4
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Re: Relapse or just continuing symptoms?

Hello

A relapse is a worsening of old symptoms and/or new symptoms lasting, countinously for at least 24 hours or more. To be considered a new relapse it has to be separated from the last relapse by a month.

Symptoms, new or old, that come and go is not a relapse. It's simply living with this disease.

Whenever in doubt or concerned contact your Neurologist.
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Old 12-17-2010, 03:36 PM   #5
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Re: Relapse or just continuing symptoms?

Hi, I feel the same way about getting used to MS and is it a relapse or just the day to day of the disease. I was diagnosed early this year and have been on copaxone since May. I notice I wake up with numbness now and then but I can shake it off and it subsides (is that MS). I never recall that happening. One morning I woke up and my hand was bent and actually "stuck"--was that MS? My husband, still not convinced it is MS, felt I just slept on it wrong. I am achy all the time, manageable but achy. If I didn't know better, I would say it's just being age 44 and arthritis starting. Last few days my upper eye lid is twitching. Weird but could be anxiety.....

 
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Old 12-17-2010, 06:22 PM   #6
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Re: Relapse or just continuing symptoms?

Thank all of you for your responses. It is nice to hear the experiences and relate to others that are dealing with this. Although, it seems there is nothing “typical” about this illness, it is so comforting to know that we can learn from one another and relate.

I checked with my neurologist and he called in a prescription for a course of oral steroids “in case” – we are headed out of town to have Christmas with family so would be a few hours away this weekend and didn’t want to be “stuck” in a small town in southern MN

Another possibility is that when we were reviewing the MRI when I was first diagnosed, it was discovered that I had a herniated disc at C6 – never had any idea! I have noticed that numbness and tingling that “shoots” through my legs is worse when I put my head down (chin to chest) so could be related – not sure. I am going to see my chiropractor on Monday and maybe that might help.
I am just so much more “in tune” with every sensation since being diagnosed. Many little “sensations” might have been simply written off in the past – age, maybe I worked out a little too much, slept wrong, hypothyroidism, working too much on the computer, etc.

When I was diagnosed I was in pretty bad shape for a couple of weeks, being dependent on others and it took about a month to get enough sensation and fine motor ability to even type (computer is my livelihood) so it was pretty scary not knowing when or even if the sensation would come back. I really believe that as time goes on I will become less and less paranoid over all the sensations and jump to the “relapse” fear.

So far I have not had any side effects from the Rebif but will only be starting my full dosage next week so hope that goes as well.
Again, thank you all for sharing – it is so very helpful. Family and friends have been very supportive – but none have “been there” so it is not quite the same.
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Old 12-17-2010, 06:29 PM   #7
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Re: Relapse or just continuing symptoms?

JodiH - I recall getting a "twitching" in my left eye every once in a while. Didn't last long and never thought much of it until you mentioned it. The neuro thinks I have had this since 1993 - so have done quite well for 17 years without treatment and only the one bad episode that led to the diagnosis. Now, in hind sight, I think I might have had a lot of "little" symptoms that I attributed to other things and they just went away (maybe MS - who knows?)
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Old 12-17-2010, 06:39 PM   #8
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Re: Relapse or just continuing symptoms?

It sounds like you are experiencing L'Hermittes.

When bending the head down you can have abnormal sensations (tingling, vibrations/buzzing, electrical shocks). These sensations only last seconds but can be repeated each time you bend your head.

When related to MS, L'Hermittes is caused by lesion(s) on the cervical spinal cord. L'Hermittes is NOT exclusive to MS, there are other causes. If the herniation at c6 is impringing on the nerve it would be reasonable to assume that could be causing L'Hermittes.
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Old 12-17-2010, 06:45 PM   #9
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Re: Relapse or just continuing symptoms?

Hi. Just wanted to mention something to you....Chiropractors and MS do not go together. Most Neuros will tell you to steer clear of a chiro, simply because manipulation and nerve damage go hand in hand, and excessive manipulation can cause MS relapses, or worse yet, permanent nerve damage.

I hate to be the one to tell you but youre likely to hear it from others...Neurology, and Chiropractors do not mix. Especially when it comes to MS.

On the other hand. I have 3 herniated discs. C4-C5-C6. That area of the body doesnt cause shooting pain down your legs, however it can cause pain and numbness in your arms/ hands. Because Ive had severe parastesia in my hands and fingers, Ive had MANY consults with both pain specialists, orthopedics and even neuro surgeons, trying to figure out if mine is MS related, or herniated disc related. The jury will probably still be divided on that one, however no one has been able to do anything for the pain, not nerve blocks, not fusion of the nerves and not any type of holistic medicine, with that in mind, I have to believe its MS pain....which is what my Neuro has said all along..

There are no easy answers, but yes, you willl always find someone to sympathize with you!
Go, have fun on your trip. Relax and take your mind off this....and dont use the steroids unless its absolutely necessary! The more you use them, the less they work...did you know that? Keep them for when its really necessary!

Happy Holidays.
Nikki
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