It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Bell's Palsy Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-19-2008, 03:55 PM   #1
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
recently diagnosed

Hi there everyone,

I am 22 years old and I was diagnosed with MS about 6 months ago. I haven't done much research until recently and I found this message board. I found that everyone seemed very helpful and supportive and I think I need to talk to people who know what I am going through and how I feel. I have experienced optic neuritis, numbness in the face and numbness from the waist down, depression and anxiety, chronic fatigue, bowel problems like constipation and pain, as well as dizziness and vertigo, loss of balance, light headedness and cognitve problems. One thing that started happening a few days ago is pain on the left side of my body (feels like bruising) and lower back pain. I have experienced the muscle aches from my meds but this is different. has anyone esle experienced this? I have not found too much info on specific pains on the net so I figured I would ask.

Thank-you

 
Sponsors Lightbulb
   
Old 06-19-2008, 04:14 PM   #2
Senior Veteran
(female)
 
Join Date: Nov 2007
Posts: 1,002
Snoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB UserSnoopy61 HB User
Re: recently diagnosed

Hello Smashly.

Pain is very common for many with MS. Please speak with your neuro, there are meds to help.
__________________
Dx RRMS 1985
5/9/13/ Secondary Progressive WITHOUT Progression

 
Sponsors Lightbulb
   
Old 06-19-2008, 05:26 PM   #3
Senior Veteran
(female)
 
Join Date: Oct 2007
Location: Ohio
Posts: 943
april1848 HB User
Re: recently diagnosed

Hi Smashly, and welcome! I'm sorry about the MS, but I'm glad you found our little family!

There are lots of people here who experience the symptoms you name every day, so you'll be in very good company! About your specific back pains, I have one too. I get a feeling that I can only describe as a red hot poker being stabbed in my back--and it's always in the same place. It was one of the many symptoms that lead to my diagnosis (September), and every test to find another cause for it came back clean. MS can cause nerve pain, neuropathy, pretty much anywhere. My MS specialist said that the lesions on my cervical spine, not the ones on my brain, are probably causing this pain.

It went away for a few months after steroids, but now it comes back when it feels like it, and always when I'm overly exhausted. A drug like Neurontin (Gabapentin) may help with the pain. It hasn't worked for me, but for others it's a life saver.

Good luck to you! Are you on any of the DMDs? You are young to be diagnosed. Please know that MS doesn't have to keep you from doing anything that you want to do. Also, feel free to vent away and ask questions here. The people here undersand! This board helped me a lot when I was first diagnosed, and it still does, every day. I'm looking forward to getting to know you, keep us updated!
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 06-19-2008, 05:37 PM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,894
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: recently diagnosed

HI Smashly- I wanted to say welcome, too. Sorry to hear about the dx, but you will definately benefit from sharing with us on this board. All of us have been where it sounds like you are- and all of us have bonded in a way that our significant others, family and friends will never be able to understand...try as they might- they just dont get MS fatigue or its symtoms! SO, welcome and feel free to unload here.

As for the symtoms you describe- some of them I can relate to. Ive had ON, and my initial dx was because of numbness and tingling, which never went away. Almost 2 years now, and I still have no use of my left hand or fingers- they hurt all the time...none of the drugs they have tried have helped- so I guess Im stuck with this for life..anxiety is something I also deal with...have you tried anything for it? I highly recommend Xanax to take the edge off...what started out as me taking them every day, went down to using them just now and then- but especially in the last few weeks, I find myself taking one at least every other day, just to deal with all Im going thru...have you tried it? It really helps..depression- I think is completely normal at the six month dx stage...youve now accepted that you have this disease, discovered how yucky some of the symtoms can be..I think its perfectly normal to be depressed right now; however, this can be something more serious, so please talk to your Neuro about it...in the meantime, vent here, ask questions and shout out to us...I found that this board literally saved me time and time again, and without it, Id be lost...I think youll find it helps you, too.

What drugs are you on? You mentioned something about your medication, but I dont think you said...are you on any interferons or Copaxone? Only asking, cuz this, too, can be a side effect- depression...just be on top of it and realize that if its hindering your life, you need to ask for help. ok?

Welcome again, and whatever we can do to help you..just let us know.
Nikki
__________________
RRMS- dx 05

 
Old 06-19-2008, 06:29 PM   #5
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
Re: recently diagnosed

Thank-you Snoopy, April and Nikki for the response.

Nikki, I have been off of work now for about 5 weeks because of the anxiety. It was making me ill and I was having severe panic attacks. I went to the doctor and she put me on cymbalta. I experienced really bad side affects from it so two weeks ago she switched me to Paxil. I only experience a few side affects from paxil like headache, worsened dizziness, insomnia (still chronicly fatigued though just can't sleep at night), and increased appetite. But if I could take something that I could gradually wein myself off of that would be great. I will ask my doc about Xanax next time I am in. Is your hand and fingers paralyzed AND in extreme pain? I am currently taking Rebif I am only on week 8 of my titration schedule though so I am still getting used to it. I didn't even know that depression and anxiety (or a lot of my other symptoms for that matter) where related to MS until last night. I just did a bunch of research for the first time.

April, I am sorry I am still new at all this. I don't know what DMD's are. Did you have the spinal tap (I think that is what is called) done to find the lesions on your spine? My neuro had me scheduled for one before my official diagnosis but then I got my second attack and since my mom was concerned about me having the spinal one done (because they have to inject something into your blood stream or something, not entirely sure) I never had it done. I would like to know about the lesions on my spine though. And if it can affect my back pain like you said, it would be nice to know.

I am looking forward to getting to know all of you. Thank-you for making me feel welcome and your kind, uplifting words. hope to hear from you soon
Smashly

 
Old 06-19-2008, 07:09 PM   #6
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

Heya Smash, another Canadian! Woot!
__________________
RRMS Dx 03/08

 
Old 06-19-2008, 07:26 PM   #7
Senior Veteran
(female)
 
Join Date: Oct 2007
Location: Ohio
Posts: 943
april1848 HB User
Re: recently diagnosed

I'm sorry I used "DMDs"!!! I didn't know what that meant either. It means Disease Modifying Drugs, which are Avonex, Rebif, Betaseron, and Copaxone--all injections, and all interferons, except the Copaxone. Tysabri is also included--that's a monthly (I think) infusion.

I never had a spinal tap (also called a lumbar puncture); I had enough lesions, symptoms, and documented history that I didn't need one. But they would find lesions on your spine from an MRI, not a spinal tap. Also, with a spinal tap--someone please correct me if I'm wrong--they don't inject anything. Rather, they stick a needle in your lower back and take out cerebro-spinal fluid, which they test. There can be some killer side effects, especially a spinal headache, but many of these can be avoided if you do what you're supposed to. There are lots of people on this board who have had spinals and it went perfectly well for them! But if you've already been diagnosed with MS, there's really no reason to get one.

I have also taken Xanax--I suffered with anxiety and panic attacks long before the MS diagnosis came along! It's a good drug for making you feel calmer faster. It's highly addictive though. It's better to treat anxiety with an SSRI antidepressant (in my nonmedical opinion), like Paxil, Zoloft, or Lexapro, ALONG with xanax to get you over the edges. The regular antidepressants could help the chemical imbalance that causes anxiety. Cognitive behavioral therapy helps too, and it can't hurt to see a therapist when you have a chronic illness.

Please don't be "sorry" for not knowing something! If it wasn't for this board and my excellent doctors, I wouldn't know anything. When I first heard "MS", I knew almost nothing about it, especially the treatments. I apologize for using that DMD thing! I was just wondering if you're on one. I do Avonex, an intra-muscular really long shot once a week.

The DMDs may or may not slow down progression of the disease by 30%, so it's a bit of a crapshoot. There are people here on all of them (there aren't that many DMDs unfortunately) and there are people here who have chosen not to take them, and they're doing well. It is a very personal choice, and whatever you decide, if you haven't already, you'll be supported here.

P.S. I am new to this too. I was diagnosed in September and I still have a lot to learn. I read every book and website (though some are outdated) that I could. Sometimes it's better to just come here with a question, since there are some very experienced people here!
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 06-19-2008, 07:39 PM   #8
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

I had a spinal done, even though my MRI reeked of MS (lesions galore) I 'failed' the evoked test, and I had at least 4 isolated incidents of unexplainable neurological events.

Then again, my neuro also does monthly blood work with Copaxone. I'm told because he likes to be 'thorough'. Well, I for one am glad he is! Would suck to have an uncaring neurologist. I'll take the over-caring one
__________________
RRMS Dx 03/08

 
Old 06-19-2008, 08:24 PM   #9
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
Re: recently diagnosed

Are you currently taking any DMD's? (Thanks for clearing that up for me by the way ) I am on the Rebif. I don't mind it so far but we will see. I get my blood work done once a month too. Just for the first year. I am going for my second one tomorrow. I guess my doc likes to be thorough too. I thought everyone had to do that for some reason.

I was kind of confused about the spinal tap because I thought my doc said something about an MRI when he wanted me to go in to get my spine checked out. But I get it now I got the two mixed up. I would like to know about the lesions on my spine (if there are any I mean) just out of curiosity. I have only had the MRI on my brain. I have had several relapses as well as many of the other symptoms so he said it wasn't necassary for me to have my spine checked out for diagnostic purposes. There was more than enough evidence. Do people often have to go in to have an MRI more than once? Have you?

Did you do a lot of research as soon as you were diagnosed? I didn't really admitt to myself that I had this "disease" until recently so I haven't done really any research until now. It is sure nice that I have people to help me learn about it now though. It's only been one day and I already feel like I have learned so much. Thanks ladies!

I am surprised, Nenu, that there aren't more Canadians on this site. I hear that Alberta has one of the highest ratio of population to MS cases in the world. I am not too sure if that is true though.

Thank-you again.

 
Old 06-19-2008, 08:43 PM   #10
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
Re: recently diagnosed

Ok. I think I have this figured out properly.So my doc was going to get me to get a spinal tap, not an MRI on my spine, for diagnostic purposes and then decided I didn't need one because of the lesions on my brain and the symptoms/relapses. Does that sound right? I am just trying to figure all of this out. Do most people have an MRI done on their spine? Thanks for your patience

 
Old 06-19-2008, 09:21 PM   #11
Senior Member
(female)
 
Join Date: Jul 2006
Location: Canada
Posts: 185
Tasia9 HB User
Re: recently diagnosed

Hi Smashly
I just wanted to welcome you to the board!! You have lots of support here
Tasia

 
Old 06-19-2008, 09:50 PM   #12
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

Quote:
Originally Posted by smashly86 View Post
I am surprised, Nenu, that there aren't more Canadians on this site. I hear that Alberta has one of the highest ratio of population to MS cases in the world. I am not too sure if that is true though.

Thank-you again.
You may be thinking of the a certain interactive global map (from CBC, 2006 so outdated a bit), it does rank Alberta up there with est. 340 cases per 100,000 people, however Atlantic Canada is 350 per 100,000. Yowsers!

I grew up in Ontario however, and they suspect the first 15 years of one's life is what sets the 'grounds' for MS. Of course, this is speculation at this point, but it is quite interesting.

MS is a VERY known disease around the area I am in now, and I find that people around me are very supportive. Some will tell you that they don't tell their employers and such, but my employer (I am still on LTD) has been overly compassionate and helpful, as has the company. I'm very blessed.

My neuro suspects that I've had MS since 25, which in Canada is actually the average age at which it is diagnosed according to the CBC info. I was actually diagnosed at 31 however (just after turning).
__________________
RRMS Dx 03/08

 
Old 06-19-2008, 09:50 PM   #13
Member
(female)
 
Join Date: Apr 2008
Location: Michigan
Posts: 65
MommaEMS HB User
Re: recently diagnosed

Hi Smashly,

Welcome to the board! This is a wonderful place to learn and ask questions. I am also on Rebif started 8 weeks ago. Remember that you are not alone.


Momma

 
Old 06-19-2008, 10:33 PM   #14
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
Re: recently diagnosed

Thank-you for the welcomes everyone. It's really nice to know that I will have support when I need it and I will give as much support as I can as well. I am on week 8 of my rebif as well. How is it going for you?

 
Old 06-20-2008, 07:30 AM   #15
Junior Member
(female)
 
Join Date: Jun 2008
Location: Millstadt, IL USA
Posts: 13
LC33 HB User
Re: recently diagnosed

Hi Smashly86. I am 21 years old and I was diagnosed 3 months ago, so you are not alone. It was hard to be so young and receive a diagnosis like I did. I am having the majority of the same symptoms as you, but with the support of my family and friends I am moving forward each day. I hope you are doing the same. I am on Copaxone for my medicine, but can you please tell me more about Rebif?

Last edited by LC33; 06-20-2008 at 07:31 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Mom recently diagnosed corina1234 Reflex Sympathetic Dystrophy (RSD) (CRPS) 16 09-24-2008 05:54 AM
Recently diagnosed & can't handle drugs...many questions! Linnaea Osteoporosis 9 07-11-2007 11:49 AM
Husband recently diagnosed bipolar - questions about medications baynick Family & Friends of the Mentally Ill 3 06-22-2006 01:55 AM
Recently Diagnosed Bi-Polar JMagnaghi Bipolar Disorder 1 06-19-2006 03:53 PM
5 year old son just recently diagnosed with ASD Julie V. Autism Spectrum 6 08-26-2005 03:11 PM

Tags
aleve, avonex, betaseron, copaxone, paxil, rebif, tylenol, tysabri, xanax, zoloft



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 04:59 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!