I'm back and have a diagnosis of MS

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Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 8/31/2008 12:05 AM (GMT -6)   
HI, I came in here a few months ago when I was going through the hoops, and all to find out if I have MS. It is official now. After several MRI's, Lumbar Puncture ( which I am still recovering from the nasty headaches), bloodwork,and amny other tests...I have been told I have MS. Now my Doc has me on Amantadine for being so tired and physical therapy for balance issues. He still is unsure if he thinks I should be on any other drugs becasue he thinks I am in early stages. I thought the drugs like Avonex, which he brought up help things to slow down so you dont progrss? I have to see him again Sept.22nd. is there anything I should ask him about? My symptoms started out with Optic Neuritis, and my left side is weaker than my right. Balance is good some days bad others, and is especially worse later in the day. More recently my right hip feels like it is locking up alot. This is all so werid, I was teaching aerobics up till April of this year cause balance was messing me up. Any suggestions on the med stuff to ask him about? Hugs to all~Katie

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 8/31/2008 6:09 AM (GMT -6)   
Hey Katie

I'm so sorry! I know u must be reeling with this. Hang in there friend. As time passes and u come to a place where this is not so raw, u'll see that somehow u will be ok. The one thing that is bothering me about u'r post is that u'r doc isn't sure u should be on one of the CRABs. (Copaxone, Rebif, Avonex. Betaseron) YES!!!! U should be on one. The sooner u get on it the sooner it can begin to work in u'r favor. None of the meds will stop or cure this disease, but these meds are u'r armour. Fight! Do some research on u'r own if needed and be ready for a discussion with u'r doc on this topic. Be prepared to make a decision and ask for the meds u want. This is u'r decision...not u'r docs. I'm glad to see that u'r doc has u working with physical therapy. That can be so beneficial. Hang in there on that friend. As for the locking up...that may be spasticity. There are meds for that and the one most here use is Bacflocan. I've not uesd it but am told it's great. Take care friend and please do that research. Decide which of the meds would fit u and u'r lifestyle. Then go to that appt knowing how u want u'r treatment to proceed and be open and frank with u'r doc. Ask any questions u'd like here. We will be glad to give u all the help we can.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
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Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/31/2008 10:36 AM (GMT -6)   

Hey Katie,

I am so sorry to hear of your diagnosis.  I want to offer all my help. Please feel free to contact me via email if you would like.  Please feel free to ask any questions.  Most research points to getting on a progression therapy as soon as possible and staying on that therapy.  I would recommed you discuss this with your doctor at your next appointment. 

You are going to go through a lot mentally now that you are diagnosed.  Depression can be a problem. Make sure you let your doctor and loved ones know if you are experiencing this.  You need support if you become depressed.  Don't suffer silently.  We are here for you.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 8/31/2008 12:47 PM (GMT -6)   

Hi there, yes, yes, yes, yes......you should be on one. Sounds like you are at an early stage of the disease, which is a perfect time to start.  I am on Copaxone, which requires a daily injection, but it does not have the nausea, etc side effects of the interferons.  I must say that it seems to be doing the trick - as I have had no relapses for almost a year, nothing new has developed.......and when I do get the symptoms is is due to "heat" or fatigue, so I stay out of the heat as much as possible, and when I get tired, I take a nap--and for the most part, that seems to help out lots.

So again, yes, yes, yes, you should get on one of the treaments as soon as possible...

 

Gary


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/31/2008 2:42 PM (GMT -6)   

Gary,

It is good to hear from you.  I can't believe it has almost been a year already!!  Congratulations!!!  I am so happy to know that you are doing so well.  That is wonderful.  Keep up the good work!!!


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 8/31/2008 3:41 PM (GMT -6)   
Wow you guys are the best. I am going to research these different drugs some of you mentioned. My Doctor did mention Avonex, but as I said,...he said he is not sure he would start me on ANY drug therapy yet since he believes I am in early stage of MS. Geese. I am not not one who like needles much, but will do anything to keep this from progressing if I can. I may even print off some of this forum to show him if you all think it may help? I will not see him again till Sept.22, so I have plenty of time to look into these meds. Also..he has me on Amantadine for how tired I get in the afternoons, is anyone else on it? He said many of his MS'ers are? I just started the dose today. We were out on our boat this afternnoon and I just cannot take the heat very long or I get clumsy and tired, anyone reate to that? I feel like I am aging a million years at once and hate not being the active person I love being. Sorry I am complaining, I am sure I am not as bad as others in here, and I only wish everyone the best. Thanks for all your advise, I will keep checking in. Right now I gotta run, pupy under my feet trying to chew on my computer lines...YIKES..love to all~Katie

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 8/31/2008 6:22 PM (GMT -6)   

Katie,

Contact your local MS Society (google MS Society) and talk to a representative.  They can provide you with literature that supports early treatment.  Make sure you have a neurologist that is very familiar with MS.  Many of us see MS specialists.   You may want to consider seeing an MS specialist.  If you are having significant symptoms, you really should consider progression therapy.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 9/3/2008 9:23 AM (GMT -6)   

Well good morning to all.....yes I have been away for awhile - took three weeks and chilled, relaxed, and did some fun things.....so all is good.

Kate7 - I am no docotor, but according to my neurologist, the interferon drugs and the copaxone are exactly made for people like yourself......early stage of the disease. the whole idea is to keep it that way - and as reported for instance for Copaxone, it more or less changes the chemistry of the imune system so that it does not do bad things to your CNS, instead do good things.  The whole idea is to slow down the rate that your immune system is attaching the myelin sheathing - and this is done by or at least is suspected to be done by these various drugs that are being offered.

So the longer you wait, well, the more time you are giving your ammune system to do its nasty deeds. So I would have to suggest that by your doctor suggesting that you wait to go on a drug trreatment, is a bit off track here.  I think everyone else who reads this will definately agree.

The fatigue is something that does interfere with daily activities - and it is not just getting tired, it is similar to your body shutting down. I can be going along just fine, then all of a sudden, my head gets foggy, my vision sometimes gets blurred, my fingers begin to get numb and tingly, my neck hurts, I feel generally ill, and I turn around to see which truck it was that just ran over me. I try to catch it before all of the above kicks in, and take a nap.....I wake up and feel pretty good again, but if I leave it too long before taking a nap, well, they symptoms may not all to gether go away for that day.  And the amount of sleep that you recieved the night before has nothing to do with the fatigue that you may or may not get the next day. I have had nights where sleep time was minimal, yet the next day I did good..there has been vise versa situations as well.

The heat.....oh yeah, if I get too warm, I get dizzy, fingers tingle, get stiff, and fatigue sets in, etc etc.  I find if there is a breeze for me, it helps lots, as it seems if I can keep the surface termperature down, I am OK.....now I read something written by one of the top neurologists who is part of the Canadian MS Society, and his paper reports that the heat sensativey in part is due to remylination - which according to him, is very heat sensative. So I gathered from that, that the copaxone has slowed things down enough to allow time for mylination?????? Maybe, who knows...

Anyhow this started to be a response, but now it is a small book....

So hope that some of this information helps....and you have a wonderful day

Gary  PS get on a drug treatment as soon as you can!!!!!!

 


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/3/2008 10:05 AM (GMT -6)   

Thanks Beau for all your advise...and to everyone else who has responded. Today I made a call to the Ohio MS Society to ask them some questions and they are going to call me back. I have also been researching these meds and the pros and cons on early treatment, the best I can find says I should be on meds ( this from MS Society) I am going to take a copy of that with me to my next appointment.

Today I am having a bad day. The eye pain has been creeping back ( optic neuritis, which is how this all began for me) and my left shoulder is having spasums off and on and are painful. not to mention my legs feel like dead freaking weight. This just really stinks. Its real hot out today so I am staying in the house painting with the AC on. Can't wait to see what the Doc tells me on the 22nd, how he is going to treat me.

I have never had this shoulder muscle pain before, not like this anyway. Seems like I am having more frequent times of spasms , legs and arms. Sorry to complain. So sick of this, as I am sure everyone in here is. shakehead Katie


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 9/3/2008 10:48 AM (GMT -6)   

Hi there....hey hang in there....I am sure that you are feeling "yuk" is due to the heat you are speaking of. Old symptoms can flare, and new ones can spring up if sensative to heat, and exposed to it.....good news is that it is temporary, and does not cause further damage. Your best bet is to attempt to do what ever you can do to reduce your body temperature.  cold packs, cloths, take a cool bath or shower - etc. And I assume you meant to say "panting" not painting, cause if you are painting, you should stop that activity as this action will of course create more heat!!! Drink lots of cold drinks -

I too have lots of spasticity in my neck, shoulders and back. Sometimes my legs feel a bit week, and heavy - but usually (for me that is) it is due to some thing going on around me - whether I am tired, too hot, maybe stressed, or all of the above.

The doctor that you are speaking about, this is your neurologist?  If you are thinking that you are going to get some resistance, yes, provide this person with website addresses, etc for all of the 4 drugs, as I am sure (I know copaxone does) have some wording there indicating that the treatment should be started as soon as possible after you have had a dx....

Note: I read that the increase in body temperature can be very minute, but still have symptoms as a result of it.....

It is a strange disease, hitting you here and there, but you will get use to it, I use to have anxiety just thinking about all of this, but that has pretty much subsided.  It is a matter of knowing your signs and triggers, and doing something about them as soon as the trigger presents themselves....I have had to make some adjustments, but as with everything else, you do get use to them, and soon they become routine....

And it is Ok to vent, in someways it is good, acts as a release valve!!!!!

Gary


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/4/2008 7:39 AM (GMT -6)   

Hi Gary,

I was painting our hallway and I was hot so maybe that did lead to what made me so uncomfortable even though I had on the AC. I just can't sit around, this is what bugs me more than anything. I am so used to being so active. My poor flower beds look horrible only because I can't tolerate being out in them to work because of the heat. The heat is supposed to let up over the weekend, thank goodness!

I have tons of things ready to show my Doctor about starting me on treatment. He is a neuro doc at the Cleveland Clinic in Ohio, who specialzes in MS and other disorders. His name is Jeffery Cohen, if you want to check him out on the internet.

As I mentioned before I have a call into the MS Society here in Ohio and they are supposed to call me back. I want to know if they know about him or if they would recommend someone else. I do have the diagnosis of MS now, just waiting to see how he is going to treat it aside from the PT and Amantadine which ( that drug) so far is not doing anything for me.

Anyway, I love coming to this forum, everyone is so helpful and nice and I am learning alot from ALL of you how I can live with this and about the disease itself. Blessings~Katie


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 9/4/2008 8:47 AM (GMT -6)   

Hi there and good morning....so you were painting and not panting - LOL. Yes even with the air going, with a rather vigourus activity such as painting would be enough to put u over the top. I leavened recently that even as influx of a temperature as low a 1 degree F can cause probelms for those who are very heat sensative. 

Another thing that works for me, is to have a fan or something like that (a nice breeze is nicer) blowing on my body, mostly my face - just to reduce the surface temperature. It can be ot out, but as long as I have something that reduces the surface temperture of my face/head, etc...I seem to do OK.....but then that is me, and this may or may not work for u.

I tried the Amantadine as well, the only thing that it did for me was give me an upset stomach, did not take the fatigue away at all. Seems the only thing that works for me is to take naps...(hey what man does not like to take naps).

Its hard to go from being very active, to having to slow down. In many ways, you dont haveto - you just have to make adjustments to accommodate certain things.  Im a pretty active person myself, and I hear what you are saying - the fatigue really does play its toll on it sometimes.

I find that I have to plan out my activities so that I do not overheat somewhere along the way. what I might want to do in the afternoon, I might now have to alter my day by doing it in the morning or in the evening. Take a bit of getting use to, not being able to do what you want to do when you want to do it. But I live in Alberta Canada, so fall is on its way, so I will be able to go back to doing the things when I want to, and not have to worry about the heat.  the only other thing that drags me down is the fatigue, but I have been able to see the tell tale signs of when I am getting tired, and then quit wimply nap....theres a learning curve as to how to manage this disease, takes awhile, but you'll gt it.
 
anyhow,dont want t bore u to death so i will stop here...talk to you later....
and hae a nice day  ......Gary
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