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Old 12-12-2009, 10:47 AM   #1
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problems at night

Hello,

For the past few months when I go to bed my symptoms of primarily tingling legs are at the worst. Then in the middle of the night I have been waking up with the following issues:
1. sharp stabbing pains that last a few seconds, they occur primarily along my spinal cord and trunk.
2. Twitches all over.
3. Tingling and creepy crawly sensations in my legs especially.

Sometimes when I wake up for some reason my brain is saying, I have to get to the doctor there is something really wrong, I start to panic.

My neurologist when I was there in October said 'I believe you do have MS and you should start taking medications.' I went to my neurologist just last week and I am still not sure about meds and he said 'There is a very high chance that what you have is MS'.

I do not know if I should start the MS medications? I hope I make the right decisions to have the longest healthiest life that I can. Can anybody else relate?

Wishing you all the best,
Positivethinkin

 
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Old 12-12-2009, 11:54 AM   #2
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MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: problems at night

Positive- youve been thru so much and I feel for you. This IS a really big decision...and its very personal, you have to be comfortable with what you decide. How many Neurologists have seen your films/ tests and exam records? Do you have a way of taking them to a MS specialist to get yet another opinion? At this point, even you seem to believe its a very real possiblity that you have Multiple Sclerosis, and yet I understand why you wouldnt be willing to start meds without a definative dx.

I found that once I got on Rebif, many of my symtoms stoppped even thought the drugs ARE NOT SUPPOSED to stop the symtoms, they slow down the progression, and therefore, no new symtoms actually started. I started to feel better after the side effects wore off. WIll it help you to be on MS drugs? Only if you really have MS....then, your progression will slow down and you will stop having new symptoms.

The only suggestion I can think of for you is to simply get another opinion and get a dx either way....if you definately have MS, then I would definately suggest you get on some MS drugs and ride out the initial side effects to see if in the end this helps you. For 90% of us, they DO HELP. If you do not have MS, its time that someone told you that once and for all so that you can seek help elsewhere.

So sorry you are facing this. As far as the description of the symtoms you are having, very much Neurological...and yes, I have the same symtoms randomly at times; but they never last long. Like everything else MS, things are very random.
I hope you get answers soon.
Hugs,
Nikki
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Old 12-12-2009, 12:40 PM   #3
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Re: problems at night

Quote:
Originally Posted by MSNik View Post
Positive- youve been thru so much and I feel for you. This IS a really big decision...and its very personal, you have to be comfortable with what you decide. How many Neurologists have seen your films/ tests and exam records? Do you have a way of taking them to a MS specialist to get yet another opinion? At this point, even you seem to believe its a very real possiblity that you have Multiple Sclerosis, and yet I understand why you wouldnt be willing to start meds without a definative dx.

I found that once I got on Rebif, many of my symtoms stoppped even thought the drugs ARE NOT SUPPOSED to stop the symtoms, they slow down the progression, and therefore, no new symtoms actually started. I started to feel better after the side effects wore off. WIll it help you to be on MS drugs? Only if you really have MS....then, your progression will slow down and you will stop having new symptoms.

The only suggestion I can think of for you is to simply get another opinion and get a dx either way....if you definately have MS, then I would definately suggest you get on some MS drugs and ride out the initial side effects to see if in the end this helps you. For 90% of us, they DO HELP. If you do not have MS, its time that someone told you that once and for all so that you can seek help elsewhere.

So sorry you are facing this. As far as the description of the symtoms you are having, very much Neurological...and yes, I have the same symtoms randomly at times; but they never last long. Like everything else MS, things are very random.
I hope you get answers soon.
Hugs,
Nikki


Thank you soo much Nikki for your response. I have mainly worked with one neurologist here in San Diego. I did go see a second Neurologist and he did the third MRI(this MRI followed 6 months after the second MRI). The second neurologist compared MRIs 1, 2 and 3. The MRIs were stable, they were showing the same lesions in the same locations. The second Neurologist said that it was most likely MS and he said he would like to see my other tests. My General Doctor said he would send my other tests to the second neurologist but he never sent these other test results and I have stopped pursuing the second opinion. I think you are right. I need to get my other test results and use them to get a second opinion. My other test results show that my eye that had optic neuritis is at a slower transmission speed with an evoked response test. The second neurologist did mention doing a spinal tap to get more data. Maybe I should do the spinal tap so I can get more data that will help me in deciding if I should take MS drugs.

Have a great Holiday season Nikki,
Wishing you the best
Positivethinkin-Brenda

 
Old 12-12-2009, 04:38 PM   #4
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Re: problems at night

hi Brenda. I also have a slower response time in the eye which has had ON three times.....but I also want you to know, I didnt show Obands in my LP. I have had two spinal taps- and neither of them is conclusive for anything. HOwever, with my 50+ lesions and all my symptoms, giving me a MS dx, wasnt too much of a stretch. The other side of geting a LP, is that they can rule out some brain infections and see if you are positive for autoimmune disease..unfortunately, LPs arent always conclusive for anything.

Start keeping a journal of tests and results. Much as its a pain, every time you go to the doctor, ask for a copy of your physicians notes (called a history and physical) to be mailed to you after they are transcribed. You might have to call and ask a week later, but stay on them! If you have a test- you can usually get copies of the films WHILE you are there....but need to go back to the prescribing physician to get a copy of the report. I keep everything together, in chronological order, to refer to whenever I have needed it. And, I have. My Neuro-Opthamologist wanted to see my films last time had eye pain.....my regular doctor wanted to send me to an orthopedic doc for back pain, and wanted to be sure it wasnt MS related...having had MRI of the Cspine, was quite helpful. (I get mine done every 6 months too). So although I could wallpaper my bedroom with images of my brain and spine, at least I have it all- and quite often have needed this stuff.

Youre on the right track and I definately think in your case, another opinion is a good idea...but taking with you, everything youve had done thus far will speed things up. No doctor likes a phone call asking to "send something on over'; however, if you have it already and can bring it with you..your new doc will love you!
Keep us posted. and Happy holidays to you as well.
Nikki
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Old 12-14-2009, 11:16 AM   #5
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Re: problems at night

Hello,

I wanted to report that the last two nights I have slept much better. I will still go get my second opinion to see if I should start a MS medication. I think what is soo important is that I stay positive and when I wake up feeling not as good as I like I have got to tell myself I will be ok. Thank you for your responses Nikki I really appreciate them.

Positivethinkin

 
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