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 06-20-2008, 09:00 AM   #16
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
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 Again Smashly..
Like you, Im on Rebif, and for LC33- Rebif is a 3 time a week shot, into the skin, not the muscle- which is one of the interferon's...interferon's work differently then your Copaxone, however they have more side effects. They are also considered to be stronger of a drug..many docs start you on Interferons first, and if you cant handle them, move you to Copaxone; however some docs believe in starting lower and then gradually increasing, if each individual warrants med adjustment. There is no RIGHT choice- whatever drug you are on is what you and your doc decided and you should stick with it, unless down the road things change, medically speaking.

Smashly- I do think that you understand the whole spinal thing, but you could be missing one thing...with MS, lesions show up in the brain, C (cervical) spine and occasionally in the Thoracic spine....many docs will MRI both the Cpsine and Brain at the same time- you can asks yours why he didnt....on some occasions, nothing shows up, so the doc will do the Lumbar Puncture or SPinal Tap (same test, differnt name) to see if Obands are found in the spinal fluid....like you, I didnt need the spinal tap to verify my MS. I had over 50 lesions in my brain and no need to look further; however I did have the spinal tap because I was exposed to meningitis a few years ago and they wanted to absolutely rule it out..(not meninigitis, but MS afterall). I have also had my Cpsine MRId many times, and nothing shows up there..its all "in my head" so to speak.

You asked about my fingers/hand...3 fingers completely dead, as far as usage, but I can feel them enough to bend them, so they are not paralyzed...but they hurt- all the time. My entire left hand tingles/burns/hurts 24-7 and I doubt it will ever stop. Nerve drugs havent helped- PT hasnt helped, Accupuncture hasnt helped...i think im stuck.

as for the Xanax- like April said, it can be addictive; however it does help. And, if you only use it PRN (when needed) and you dont abuse it, by taking it twice a day or regularly- addiction isnt something to really worry about if you know what you are doing..but also, like April said, I think that the Paxil or any of the other anti depressants might be a good choice for you at least until you start feeling stronger about all this.
Im sorry you are out of work- I took 2 days off to get it togehter this week, too. My job is extrememly stressful, and Im in sales, so the pressure is intense- this week has been horrible, so Ive decided to take a long weekend...I see my Neuro on Wed, and IM seriously considering asking him to write me out of work an extra week just to give me time to regroup. Ive had a prettty horrible month!

Please keep in touch with us...were here if you need us!
Nikki
__________________
RRMS- dx 05

 
Sponsors Lightbulb
   
Old 06-20-2008, 09:29 AM   #17
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

I do believe that my neuro began me on Copaxone because it was the cheapest option for me .

I recall at the hospital after those words of dx, he then said "There are 4 drugs, each is administered a bit differently (of course he was referring to the CRABs as we call them... DMDs in other words, but CRABs - Copaxone, Rebif, Avonex, Betaseron), each has a different price tag." So I said, "Whatever is cheapest!". I had no clue LOL.

I'm happy with Copaxone for now, however I'm only on month 2, so it is hard to say what the end result will be, as it can take 6-9 months for most to show how they're benefiting (or not) from this drug, although 22 months is not unheard of either.
__________________
RRMS Dx 03/08

 
Old 06-20-2008, 02:13 PM   #18
Member
(female)
 
Join Date: Apr 2008
Location: Michigan
Posts: 65
MommaEMS HB User
Re: recently diagnosed

Hi Again!

You asked how I was doing on Rebif, its been really good. I had problems with Vertigo for about 5 years and thankfully it is now gone. I get a little light headed sometimes but the spinning i used to get when I would try to lay down or look up is gone!!!! That is such a blessing.

I haven't had any adverse reactions, no flu like symptoms or anything like that. I still have aches and pains and the fatigue hasn't gotten any better but I'm thrilled that the vertigo is gone.

Keep us posted on how you are doing. Have a great weekend.

Momma

 
Old 06-20-2008, 02:59 PM   #19
Newbie
(female)
 
Join Date: Jun 2008
Location: canada
Posts: 8
smashly86 HB User
Re: recently diagnosed

I don't know much about the meds. I know a little more now that Msnik explained it. My mom has pretty much done all of the research for me and everything because I have had such a rough year that she wanted to make it easier on me. Since last summer I have bought a house, changed jobs, had ovarian tumors the size of grapefruits in each ovary, got diagnosed with MS and also lost over 115 lbs. So it's been mentally, emotionally, and physically stressful year. That is also why I decided to leave my job. My doc was giving me notes because she didn't want me working right now either but yesterday I decided to quit because my job sounds simmilar to yours, nikki, sales, high pressure and stressful. It just wasn't working for me anymore. If anything it was worsening my health. My boyfriend and my parents are very supportive though so I will probably find a low-stress part time job eventually. right now I just need to rest I think. Get my mind in the right place .

It is a good thing you didn't have meningitis (not so good about the ms). I hear that it can be deadly. It's too bad about your hand too. But it sounds like you a pretty positive and you know how to keep moving in the right direction. That is so important I find. Sometimes it is very difficult to be positive about things like ms but you seem to be pretty good at it. You should take some time off of work if you need it. I told my manager that I needed some time off and she told me I had to wait until the end of june (not to be mean we were just busy). So I told her I would wait if I had to. Then I ended up having panic attacks at work and getting sick to my stomach from stress (plus my bowels have been in agony). And my doctor took me off. You don't want to wait until something like that happens, hey? Is your work cool with you taking time off when you have a doctors note or do they try and make you feel guilty about it?

Momma, sounds like the Rebif is about the same for you as it is for me too. I don't get flu like symptoms except for the muscle aches too. I am so glad that I am so good with needles. Otherwise some of this stuff would really not be too fun. Like getting the blood work every month, the intervenus steroids, and the Rebif.

Talk to you later everyone. Have a great day!!!!

Smashly

 
Old 06-20-2008, 03:44 PM   #20
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

I just sold my house! I had purchased it when I was still with my bf, but dealing with house on my own isn't happening
__________________
RRMS Dx 03/08

 
Old 06-20-2008, 04:04 PM   #21
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
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

Smashly, tell me your secret for getting work to allow you time off and Ill send you a zillion dollars! No, they are not cooperating. My doc actually gave me a note 2 weeks ago, it was actually temporary disability papers- telling me I had to be off work for 2 full weeks. Unfortunately, the next day, i was supposedly heading to an expo in another city..I went. Stupid me. I plowed thru 5 of my 15 days where I shouldnt have been working and wound up feeling ten times worse than when I started!
So, I have 5 days of the 14 left at this point, and decided im not going to work until I see my doc again on Wed...thats my last "disability day"..maybe I can have him keep me out longer- I dont know. Its kind of my plan, to ask him to allow me more time....my boss WOULDNT sign the disability note- so Im not getting paid for anytime off...but if I stay out the full 7 days consecutively, then I can file it and argue it without his (my bosses) okay...I might win, I might not...but at this point, I wish he would fire me. Then, I could collect for awhile...its not likely to happen.

My life right now is a disaster...Im losing everything I worked so hard for. I do own a home, and am married, and my husband is of no help whatsoever. But thats a story for another time..
Meanwhile, hope you are having good days..and your lucky your mom is so supportive. Personally, I think she made the right choice with Rebif..its aggressive, its strong, the needle is the smallest on the market, and if you havent had any real side effects so far, then youre probably not going to get any. I too, did blood work every month for the first year. Hard to believe at the end of the summer Ill be on this drug for 2 full years! my blood work is always fine- my MRIs (whcih I have every 6 months) arent showing any new lesions- so overall, Rebif is working great for me...as for the positive attitude about my hand- if you want to laugh, search my previous posts- my attitude wasnt always positive..Ive learned, mostly thru the support here, that you do what you can and dont do what you cant. I cant change this- Ive tired everything the Neuro can think of..its not changing or fixing anything- so I just deal!
Glad you are joining in with us..its nice to have another Rebif'er on here!
Hugs
Nikki
__________________
RRMS- dx 05

 
Old 06-20-2008, 09:09 PM   #22
Senior Member
(female)
 
Join Date: Jun 2008
Location: Vancouver, Canada
Posts: 111
Canadian gal HB UserCanadian gal HB UserCanadian gal HB UserCanadian gal HB User
Re: recently diagnosed

Quote:
Originally Posted by smashly86 View Post
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
Hi and welcome, smashly.

I am in Canada too, in Vancouver.

The numbness you are experiencing is likely from a spinal lesion. Depending on our symptoms, and how much evidence they need to make the dx, they may do a MRI of the brain, C spine and T spine. Quite often our spinal lesions don't show very well, even in a MRI, but based on your numbness from the waist down and bowel problems, it sounds like you have them.

There is really no need to get another MRI, EVER, if you don't want to. Some people, and neuros, do so out of curiousity. Sometimes they use this information (changes in the MRI) to try to evaluate a persons 'drug of choice' too though, so a neuro may suggest one in another 2 - 10 yrs. However, it is usually obvious if a drug isn't working for a person, if they continue to have a lot of relapses.

The damage that occurs from having spinal lesions can be pretty obvious, and our doctors can estimate with precision where our spinal lesions are, based on our symptoms in a (spinal lesion) attack. Your's is likely in your lower T-spine, since you went numb from the waist down. Or, perhaps it is a higher lesion (because you had facial numbness too), but the inflammation wasn't as bad as it could have been. Where ever the lesion is, we are affected from that point down.

I have two spinal lesions, and the first one caused numbness from the breasts down (mid T-spine lesion). The second time my numbness was head to toe, so they knew it was a upper C-spine lesion. That is where they were located in the MRI, when I finally had one.

Once dx, there is no need for a lumbar puncture either. In fact, based on my personal experience, a LP would be a LAST RESORT test. It is certainly not necessary for you, at this point in the game.

I too have bowel issues, both from MS and Ulcerative Colitis. That has been very difficult at times, especially during attacks, but it is an ongoing/daily problem as well. After trying everything under the sun, I found Benefibre very, very helpful. You do not want to leave constipation (especially) untreated, as it can cause long-term/permanent damage.

I have had some back pain, from both the lesions, and because of poor posture (due to other aches and pains I compensate for). Massage, by a profession who is very experienced in MS, can be helpful. Otherwise, just time and laying around a lot, seems to help. Naproxen 500mg X 2 per day can take the edge off . . . but it does not take the pain away.

We tend to blame a lot of our health problems on MS too, so if something is causing enough pain, have it checked out by a doc. Don't "assume" it is the MS . . .

Sorry to hear about the dx at such a young age. I can date my symptoms back to my late teens, but they didn't say anything until I was 31. I guess I'm kinda glad about that.

Cherie

 
Old 06-21-2008, 04:10 AM   #23
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

Cherie, you were also dx'ed at 31?

My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.

I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.
__________________
RRMS Dx 03/08

 
Old 06-21-2008, 06:43 AM   #24
Senior Member
(female)
 
Join Date: Jun 2008
Location: Vancouver, Canada
Posts: 111
Canadian gal HB UserCanadian gal HB UserCanadian gal HB UserCanadian gal HB User
Re: recently diagnosed

Quote:
Originally Posted by Nenu View Post
Cherie, you were also dx'ed at 31?

My biggest 'symptom' is proving to be burning mouth. 2 neuros so far figure brain stem lesion. If that's just suspicion or truth, I'm not sure, I never saw my MRIs. I could go back searching if I really wanted, but as my neurologist said, what's on the MRI doesn't matter at this point (number of lesions etc). What matters is the dx and following with the drugs.

I only take a max of 500mg of Neurontin (Gabapentin actually, the generic) and 10mg of Amitriptyline for the burning mouth. Plus my Copaxone, and OTC drugs (Tylenol) for headache.

I'm not sure where the lesion would be for a burning mouth. From the notes I've kept, "the neurological functions located in the brainstem include those necessary for survival (breathing, digestion, heart rate, blood pressure) and for arousal (being awake and alert). It is the pathway for all fiber tracts passing up and down from peripheral nerves and spinal cord to the highest parts of the brain."

I have heard of people with facial numbness, similar to Bell's Palsy (which can occur from MS), with the only known lesions in their brain.

The upper spinal cord influences the following:

C1: blood supply to the head, pituitary gland, scalp, bones of the face, inner and middle ear, sympathetic nervous system, eyes, ears
C2: eyes, optic nerves, auditory nerves, sinuses, mastoid bones, tongue, forehead, heart
C3: cheeks, outer ear, face, bones, teeth, trifacial nerve, lungs
C4: nose, lips, mouth, Eustachian tube, mucus membranes, lungs
C5: vocal cords, neck glands, pharynx
C6: neck muscles, shoulders, tonsils

The numbness I've had in my face included a numb mouth, tongue, lips . . . and on other occasions, the top of my head and tips of my ears. Last time they checked, I had a large lesion in the C2-C3 region, which seems to make sense for my symptoms.

I think the max they will rx of Naproxen is 750mg X 2 per day. Basically that is just three Aleve @ 250mg each. When I have a lot of inflammation, I will start with 1000 mg of Naproxen, take 500 mg the second time that day, then 500mg twice a day after that. A person should be monitored when using anti-inflammatories at that dosage, and they shouldn't take them for long periods of time. I've been using them several years, with no bad effects, so my doc rx's 100 at a time to me (and manages when I need another rx). I don't like taking meds though, so I use them sparingly, EXCEPT when it comes to the back pain. That is all that I use get me through the day though.

Cherie

 
Old 06-21-2008, 08:09 AM   #25
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

Geez, I don't know HOW I read Naproxen as Neurontin lol!

Busy getting stuff ready to move today. My head's swimming.

On the topic of facial numbness, I had something that looked similar to Bells or facial spasm on the right side of my face, lasting a couple months. I didn't get the tell tale droop, I had the corner of my mouth on the right being pulled upwards.

The burning mouth predated this, but my burning is 99% on the right side, upper region. It continued after the spasms etc calmed down. I still get eye twitch on that side, and very rarely twitching in my cheek/mouth area.

If I could get this burning calmed down once and for all, there goes most of my daily misery. It is generally ok if I am relaxed, but once I get stressed, it does become quite bad.
__________________
RRMS Dx 03/08

 
Old 06-21-2008, 08:37 AM   #26
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
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

Nenu- if you are taking Garbapentin, it IS NEURONTIN..which is NOT the same as NAPROXIN....Naproxin is a NSAID, a nonsteroid antiinflamatory drug, sold over the counter as Aleve in the USA...

Neurontin is for nerve pain....

Be sure of what you are taking....

Cherie is right about the dosage of Naproxin, but Neurontin can be taken up to 350 mgs 3 x a day...however, that dosage will put you to sleep for a few hours! Naprosen, doesnt make you tired- its simply OTC drug for pain much like Motrin or Tylenol.

nikki
__________________
RRMS- dx 05

 
Old 06-21-2008, 08:44 AM   #27
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

Quote:
Originally Posted by MSNik View Post
Nenu- if you are taking Garbapentin, it IS NEURONTIN..which is NOT the same as NAPROXIN....Naproxin is a NSAID, a nonsteroid antiinflamatory drug, sold over the counter as Aleve in the USA...

Neurontin is for nerve pain....

Be sure of what you are taking....
LOL, yeah I know I'm taking Neurontin (Gabapentin) for nerve pain (specifically BMS), and overall it's helping the BMS pain for the most part. I'm taking the lower end of dosage, and they've shown BMS responds to the lower ranges. It is in fact nerve pain causing the burning mouth ordeal.

I've taken Naproxen previously (my stomach didn't like that very much). If memory serves me correctly, Aleve is not sold in Canada.

I'd read Cherie's post as Neurontin, and after she clarified she was talking about Naproxen. One of those days.
__________________
RRMS Dx 03/08

 
Old 06-21-2008, 08:58 AM   #28
Senior Member
(female)
 
Join Date: Jun 2008
Location: Vancouver, Canada
Posts: 111
Canadian gal HB UserCanadian gal HB UserCanadian gal HB UserCanadian gal HB User
Re: recently diagnosed

Quote:
Originally Posted by Nenu View Post
If memory serves me correctly, Aleve is not sold in Canada.
You may be right, come to think of it. I only live a hop, skip and jump from the border, so I forget which country has what.

Either way, at that dosage a person really needs to be monitored . . .

Cherie

 
Old 06-21-2008, 09:21 AM   #29
Senior Veteran
(female)
 
Join Date: May 2007
Location: New Brunswick, Canada
Posts: 1,376
Nenu HB User
Re: recently diagnosed

I do wish I could find Aleve here however. My TMJ has been bad the past few days. Jaws are aching

Thankfully no headache upon waking today however, and it's been a long time since that happened
__________________
RRMS Dx 03/08

 
Old 06-21-2008, 09:41 AM   #30
Senior Veteran
(female)
 
Join Date: Oct 2007
Location: Ohio
Posts: 943
april1848 HB User
Re: recently diagnosed

I've found Aleve to be great for headaches. I've been getting them often since I was a kid, and bad ones, though I don't get as many migraines as I used to. Aleve definitely works better for my headaches than tylenol or ibuprofen.

Unfortunately Aleve doesn't help much for the Avonex side effects, but Ibuprofen does a little. I had almost no side effects the last two weeks, and today I feel miserable, and I still have a small fever. It's a bummer, because I thought they were finally going away, and I did everything I usually do last night. Oh well!
__________________
April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Mom recently diagnosed corina1234 Reflex Sympathetic Dystrophy (RSD) (CRPS) 16 09-24-2008 04:54 AM
Recently diagnosed & can't handle drugs...many questions! Linnaea Osteoporosis 9 07-11-2007 10:49 AM
Husband recently diagnosed bipolar - questions about medications baynick Family & Friends of the Mentally Ill 3 06-22-2006 12:55 AM
Recently Diagnosed Bi-Polar JMagnaghi Bipolar Disorder 1 06-19-2006 02:53 PM
5 year old son just recently diagnosed with ASD Julie V. Autism Spectrum 6 08-26-2005 02:11 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




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



Sunsetnan (3), Atnie (2), janewhite1 (2), Harry504 (2), toddersk (2), ard164 (1), chasman08 (1), Jacy56 (1), friscogiants (1), Wellensmurf (1)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (857), janewhite1 (823), Titchou (773), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 11:51 AM.



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