Advice needed

[raekay35]

I recently found out I have 7 lesions consistant with MS in my brain...I had a lumbar puncture done last week and it came back with greater than 5 OCB bands (consistant with MS)...I had a cervical MRI on Wednesday and don't know the results.  I have been experiencing extreme dizziness, and vision problems (blurred).  Last Monday I developed a prominent tremor in my right hand that I am still suffering with.  On Tuesday my doctor gave me propranolol for the tremors, which caused me to drop my pulse rate and blood pressure and gave me an extreme headache.  Only minimized the severity of the tremor for about 4-5 hours.  I spoke with my doctor on Wednesday and she suggested that I take 1/2 the pill on Wednesday, which I did.  Same effect but didn't help with the tremor at all.  I didn't take it today because I didn't want to suffer from a headache for no reason when the medicine doesn't help. Does anyone have a suggestion for the treatment of this tremor that maybe I can suggest or bring up to my doctor.  I am 35 yrs old and it is really affecting me emotionally.  Very embarrassing and stressful trying to keep it out of the sight of my 10 yr old son, who doesn't know what is going on and from customers that I have to deal with at work.  Any suggestions would be greatly appreciated.  

[jensequitur]

Some of the hardest parts about this disease is pretending to live a normal life while you deal with the symptoms.  I was lucky that I wasn't in a high-traffic area with lots of people when the worst of my tremors was going on.  I started feeling a lot better last year, which is a good thing, because now I'm in a room with a lot of people.  If the symptoms start up again, I'm not going to be able to hide it.

The best thing to do is not to try to hide it.  The more you pretend to be normal, the harder it will be for you.  Just concentrate on doing your job, and taking care of your boy - the rest will work itself out.

And rest!  Rest is the best thing for me - sometimes I'm so tired that there's nothing else I can do.

[Fluffysmom]

Hi there.  My first wake-up call symptom was tremors.  Truly, I woke up with them, and was a bit worried, to say the least. I went to my PCP, brain MRI, lesions; after many tests and time, I'll soon start treatment for MS.

The tremors did calm down after a week or two, but would get worse if I got over-tired, did too much, etc.  I tried metreprolol, which didn't help the tremors, and I had about every side affect listed for it, and stopped taking it.

I found that giving up caffeine has helped some.  Tremors are apparently difficult to treat, but they will often calm down, become less noticeable, or even stop altogether for a while, maybe a long while.

I researched what to do for tremors, and one bit of advice just made me laugh out loud: "Don't eat soup in public."  It just seemed really silly to me; I'm worried about what's going on with me, and they're saying "hide it, and it won't bother you".

Having a weird sense of humor, I did go out and order soup that night; my roommate couldn't understand why I was grinning as I carefully ate it.  I explained, and I think it shocked her that I was laughing at what had been freaking me out.  

I'm not suggesting you give that a try, but do give it a little time, see if the tremors calm down on their own.  I tried Anti-Parkinsonian meds for my restless leg syndrome, and they made me drowsy and off-balance.  Of course, you could tolerate them well, so it would be worth a try if the tremors don't calm down.

If someone should ask what's wrong with you, there is no reason why you have to answer them.  You could say a generic "I'm fine", smile and wave them off, or whatever works for you.  I tend to save stuff like "If I wanted you to know what's wrong with me, I'd have told you already" for when I'm alone, or just say it in my head while smiling.

Sorry if I'm running on and on.  I do understand the emotional impact of what you're dealing with, and wish only the best for you.  

Kathy

[Lulu54]

Hello, I don't know how long it might take for anti-tremor meds to begin to work - perhaps it is like of drugs and takes a week or long for the cumulative effects to kick in??

Like I said, I don't know, but your doctor should.  Can you give a call and check with someone there?

I'm so sorry you are going through this diagnostic process - I certainly hope it isn't MS, but keep in mind it could always be something much worse.  We're here if you have any questions or just need to hang out while  you wait.

my best,
Lulu

[raekay35]

Thank you all for your comments.  I haven't told my son anything until I know for sure.  No reason to get him upset and worrying about something that may not be true in the long run.  I'm just really overwhelmed by everything right now and just want answers one way or the other.  And I want this stupid tremor to go away!!!  The emotional and embarrassing toll it is taking on me is unbelievable.  I am not one who cares usually what other people think about me but to know that something negative is standing out, its like a red flag of welcome for people whom I don't even know ask me what is wrong and am I alright.  Well, I got the Cervical MRI results back, no lesions found, best knews I've had in a long time.  Still doesn't change the symptoms and lesions in the brain and the OCB in the CSF.  Well, if anyone has any other suggestions about this tremor I would geatly appreciate it!!!  Thank you again for all your advice and support.  

[sg40]

I have no medical advice for you - but I do have a bit of mommy advice. Be honest with your son. You don't need to give details, and can keep it very simple. Kids sense when something is wrong with their parents, and often can imagine the situation is worse than it is. I told my kids the basics, and now when I have bad days I can tell them why. It's easier for them to accept things I can't do sometimes - like have my 6' tall 13 year old lean all of his weight on me when he hugs me when me right leg is being stupid. There is literature available out there (probably here in the health pages too) that can help you with how to talk to kids about it.

Good luck to you.

[Heather3418]

The best drugs for tremors, are anti-Parkinson drugs.

I would give your tremors, time to go away on their own, if they will; rather than start on a medication.  As I understand it, this bothersome tremor has not been affecting you for very long.  It could well go away on it's own.  It's much better to wait a little while, than to stick another drug into your system, that may have adverse side effects that are worse than the tremor.  True?

All the Best,
Heather
Dx with MS for over a decade

[PastorDan]

This non-physician, whose MS knowledge has come overwhelmingly from reading this forum over the past eight months, says you sound like you are well on your way to something that many of us (myself included) seek: a clear diagnosis.  I wish I could tell you otherwise, and I still pray that I am wrong, but from what you've listed already in two posts and a journal entry or two, yours souds like a slam-dunk case to me.  Still, as many here will point out, this is no death sentence, and for a fortunate few it is no big deal in the long run.  There are treatments today that didn't exist a few years back, and more in development.  Coping strategies are many, and the Health Pages we've created here (yellow icon, upper right part of this page) describe some.

Welcome to the gang.  As that nice guitar lady told you, this is a fabulous bunch of folks -- supportive, informed, and caring, not to mention accessible and just plain nice.  I will pray that you soon find the answers you will need to cope with whatever your future holds.  I am confident that this forum will be of great help in that regard.

As for that tremor, let me know if you find anything.  Years ago, I had atenolol (I think) for a cardiac arrhythmia, and it did the same thing for my pulse and BP.  I remember sliding out of my office chair onto the floor one morning, like Jell-O that had gotten a bit warmer than is good for it.  My late wife's late mother took propanolol for several years (that is Inderal, isn't it?  They all start to sound alike after a while.) for essential tremor, and she did quite well with it, but she didn't have MS, either.