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
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.
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.
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 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.
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.
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.
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.
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.
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!
It is certainly not necessary for you, at this point in the game.
