I am recently diagnosed and I did 6 injections of 8.8, no side effects except for some flu symptoms. Then yesterday I took my increased injection of 22 and all day I have felt like a bug was crawling on the top right of my head, no pain or anything else and my doctor won't be available until monday, should I be concerned. the drug store said no one had ever reported this kind of thing to them and ms lifelines said call the doctor. well it is saturday and no doctor until monday, quite a while to wait if I am having an allergic reaction to the rebif
Your doctor should have someone who covers his calls. If not, I would say go to the ER to be safe. I do not do meds, but this is my advice to you. As MS Lifeline felt you should see your doctor, get someone to look at you.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The Following User Says Thank You to MSJayhawk For This Useful Post: zero54 (04-29-2012)
Hi. I was on Rebif for 6 years. This is not a side effect of Rebif; howver it very well could be a MS thing. The creepy crawly affect of feeling like bugs or cold water on you, often happens to MSers.
I do not believe that your doctor doesnt have an emergency number to call if you call his office, he HAS to have a neurologist covering him. Have you actually tried it? When you call his office, doesnt it say "if this is an emergency....." or is he really directing you to the emergency room? If he is, Id question that. In the future, if you have a true emergency, is that what you get to expect? Thats very unprofessional and would be a valid reason to find another doctor.
If you go to the ER, they arent going to do anything. You dont have enough Rebif in you yet to even measure it in your blood work...it takes 6 full months at FULL dosage 44 mcg to have Rebif start working.. but if it will make you feel better to go to the ER, then go.
SIde effects with Rebif include shortness of breathe, large red welts on the body near the injection site and a rash all over your body..if any of those are happening, then yes, to the ER you should go.
Sensory symtoms, like feeling like something is crawling on you is a nerve reaction to typical MS ....it usually comes and goes..the best thing in the world for this is to ignore it and put it out of your head. As fast as it starts, it usually goes away. You can look into some nerve pain drugs if it persists...
Let us know what happens? And, if you truly need peace of mind, go to the ER.
nikki
honestly I don't know if my neurologist has a weekend someone that can be called. I did not try because in my very small town there is nothing like that so I just assumed it was that way in jackson. I did do some internet research and the crawling feeling has gone away but I believe it was from the ms, but I will double check with my neurologist tomorrow. Our er is a joke, they do the best with what they have but they have little. 4 times in the last 10 years I had to be taken there all because of ms relapses but they did not know I had ms at the time and neither did I so I was treated for tick fever, inner ear problems, etc... all the while saying why your too healthy to be here. well apparently I was sick else why was I there. joy
I live in the sticks and there are only general neuro available here. However, I believe that you will find that there is someone always on call. Doctors run liabilities when their patients are left "hanging". At the very least, his nurse should be on call with the wherewithal to reach him. I hope you are doing better today.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I agree. There is no way that your doctor leaves his patients completely hanging just because its a weekend, or he is out of town. He has to be reached for emergencies, or have someone covering him. I would be willing to bet if you called his office on a weekend, you would get some sort of outgoing message saying "if this is an emergency...." with either a number to call or at the very least, a message to go to the ER.
Im sorry you feel that you dont have a doctor who is available to you. I do realize that living in a small town limits your choices, but since you are newly dx with MS, I would suggest you locate a neurologist in the next closest town for this very reason. If you have a relapase, and zero confidence in your local hospital, youll need to go somwhere for help....and waiting a few days can be a bad thing.
Look into it, so you are prepared....
I hope you feel better.
Nikki
Glad to hear it Joy. Im sure that the feeling was just one of those crazy MS things and not a Rebif thing...you stated you were just going to the middle dosage. You shouldnt be having any side effects at all until you reach 44 mcgs...
At that point, the flu like symtoms will kick in.
Stay really hydrated while doing these shots....and remember to take tylenol or aleve 1/2 before you do them, it will help with the side effects. I found aleve to be the most helpful because it lasts 24 hours...
I have some faith in my local hospital but we only have the one and they are small so they don't have the latest stuff, but I will be sure to go to another bigger hospital if I need to, my major concern is since I am new to ms I don't really know what to expect as to relapses and the next town with a good hospital is one hour away so in an emergency when time is critical I feel I would have to go to the only hospital here which is 5 minutes away. joy thanks
Joy,
I understand that being new to this, you really dont know what to expect- but maybe this will help. YOu didnt just get MS recently, it takes years for the disease to present itself in the form of symtoms and have lesions show upon your MRI, which the doctor can then diagnose. So, youve had this for awhile. If you look back over the last few years, I am willing to bet you had some symtoms that, like the rest of us, you ignored thinking they werent important.
For me, it was heat sensitivity and balance issues. How was I supposed to know that being cognitively fuzzy and sitting on the bathroom floor after a hot shower wasnt normal? OR, falling down the stairs, tripping over my own two feet wasnt just being clutzy? THey were warning signs which I ignored.
A MS relapase doesnt come on "all the sudden" with the exception of Optical Neuritis, You could wake up one day with a pain behind your eye and possibly some color vision loss- you could even have a dark area when you look to the side; but you wont wake up completely blind in both eyes. Not from MS anyway.
A relapse of the cognitive type, will come on over a period of time. Youll feel like you are getting sick, youll be exhausted and quite possibly have a tough time with your body reacting the way it should. IT could be muscle fatigue or even a dragging leg/ foot. You could wake up one day to pins and needles in your hands or arms or legs which actually may go away and come back. Things like this, are things you should talk to your doctor about. An ER wont do much for you...but a doctor can order you IV Steroids, which is the treatment of choice for minimizing/ reducing the inflammation in the body. Sometimes, it fixes things 100% , other times it fixes things less than 100%- it depends how much damage is done to the nerve which is attacked. Everyone is different, and every relapse is differnt. At this point in time, you obviously have Relapsing/ remitting MS-the most common type, or you wouldnt be on Rebif...thats a good sign.
As for the crawley feeling coming back. This sounds like it could be anxiety related as well. ITs not the Rebif doing it- but it can be a regular old MS thing- youre not protected yet from potential damage, you havent been on it for 6 months- and even when you are on it for 6 months, there is no guarantee that you wont have a new symtom. Rebif doesnt take away or prevent new symtoms, its designed to attempt to keep the body from attacking itself preventing further damage...however it isnt an exact science. The best you can hope for is it reduced relapses. I have gone for 6 years relpase free and the only bad thing that happened to me happned while I was on Rebif...but I developed antibodies to it after 5 years on it. After stopping the injections, I got healthy again. Nevertheles, I would call your doctor tomrorow and report the feeling and ask if they want to see you. Youre under an awful lot of stress right now and if seeing your doctor makes you feel better, you should go.
Hope you get a good nights sleep.
Feel better.
Nikki
the crawling feeling came back right after church guess God didn't want me acting funny in church. joy
The creepy crawlies can vary. I do not do meds, but I get them- even in church ! Just remember that the Apostle Paul asked God 3 times for his problem to be removed. God told him 'no' because He said his grace was sufficient. Sometimes it feels frustrating, but it does also humble us. Remember that this too shall pass!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
the info you sent is very helpful and while I am not glad I have MS it is a relif to finally know what has been wrong all these years with me. I have had balance problems all my life and in the past 13 years it got much worse. I fall so much if I had a penny for every fall I would be rich. Since my diagnosises I have done research and bought books and I now know that most all weird things that haver been going on with me most of my life was MS. It doesn't change things but it is a relief to know I am not crazy. joy
I was kind of glad to find out that my "craziness' had a reason too Joy. Especially the cognitive fuzzies. Being normally very intelligent, the whole crying uncontrollably when I was overheated and not being able to formulate sentences which made 100% sense, was really scary to me. Once I learnd that my brain stem cannot handle extreme temps and cut hot showers out of my daily routine, I felt 100x better. The balance thing actually seemed to get better too, once I realized that wearing flat shoes and taking my time instead of racing around like a nut helped.
In many cases MS is a blessing. We learn how to better listen to our bodies and to take care of ourselves better. We learn to pay attention and savor the good days and prepare for the worst. Not many people understand that, but I think you might.
Its always better to know, then to live in limbo land.....but actually knowing its MS just isnt the worst news one can hear...
ever since I can remember I have had what I called brain fog, never feeling awake always feeling like I was in a smoke filled room, mentally. then after I had my major relapse and I had to have an ambulance called for me, resulting in finally finding out I had MS, the doctor did steroid ivs and the brain fog was gone, it was like an ailen had snatched my body and replaced it with another one. I felt like a totally different person, I could actually sleep wake up feeling like I had slept, no more fatigue, it was amazing but some of that has returned not as bad by far but now that I am on the rebif I hope I will never go back to my old self. I know I can't change all the damage that's already done but I hope to stop any further damage. joy
Cognitive exercise (reading, writing, etc) can help you with the brain fog. My brain fog increases as mental fatigue sets in. This fatigue can start with the body; when it is pushed past my tolerance threshold, mental fatigue ensues.
You are not going to be able to stop further damage without a cure for MS. Meds claim to slow down the progression, but the disease will eventually progress for most MSers. The best thing I have found is to recognize your triggers and learn to avoid them. This allows us to be empowered and we can be in control- but not total control. There will still be times when things are beyond our control. When those occasions arise, do not blame yourself, get you rest, and soon you can get on with life.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
hi. Triggers are things that set off our symptoms. Triggers can be stress, temperature, food, etc. Like MS itself, triggers can vary from one person to another. Temperature triggers are one of the first things I noted. In 1982 my neuro told me no hot showers from your neck and up. Nowadays my shower tolerance is much less and I have o watch this trigger. Also, daily temperatures, for me, are triggers. I have found that I have a high and low range of triggers. My low range is pretty consistent at about 52 F (11.11 C). My upper range depends upon the humidity percent. I was outside just the other day and the humidity was high and I found my upper limit was only 79 F. Now, on other days this can be 82-86. I have to take note of my "feeling" and get out of the heat if I start to feel problems.
Another trigger for me is light. I am light sensitive in my right eye and have been since 2002. For this I use a pair of polarized sunglasses even indoors. the problem varies depending upon the light frequency. At night it is much better. Prior to the sunglasses, I was in 24/7 pain. Nowadays my pain has dropped to maybe 2-3 times in a year. It took at least 2 years of wearing the sunglasses to make a difference.
Certain sounds can also be triggers for me. Our vacuum cleaner is one of these. I wear shooters ear muffs and they cure the problem.
Keeping a journal can help you discover your triggers. Rely on your intuition and experience.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
The Following User Says Thank You to MSJayhawk For This Useful Post: zero54 (05-01-2012)
! Just remember that the Apostle Paul asked God 3 times for his problem to be removed. God told him 'no' because He said his grace was sufficient. Sometimes it feels frustrating, but it does also humble us. Remember that this too shall pass! 
