Aa
MS??
mri and my doctor say that I have MS, BUT my lumbar puncture came back normal?? Can I still have MS with a normal MS panel?? Now I will have another MRI of my neck and back Thursday to see if anything else if going on> Please give me your input!
Just to say that sorry I realised that I got my wires crossed (blame it on MS) saying about the steroids and It hink that reading some of the other posts about steroids made me make a wrong assumption that you had been given them.
So apologies for not reading your question more carefully and still sending you love and support.
Sarah x
So apologies for not reading your question more carefully and still sending you love and support.
Sarah x
Thank you all so much for the very sweet words of encouragment.. I'm so glad that I found you great bunch of people!!
Hi there,
You are amongst the minority here with a 'quick' diagnosis. I too, was diagnosed pretty quickly during my 1st big flair. I was not offered steroids during this flair. Not sure why, but regardless, it took months for me to see any improvement.
I started Rebif fairly quickly and have done well with it. The side affects for me have not been unbearable at all. But, like all meds, there is always the risk of having those on the list. Just have to weigh benefits vs risks.
I'm so sorry you can't sleep. You can't force this to go away that is for sure. Takes its own sweet time to see improvement and try as you may, you can't wish it away.
Just get through each hour best you can, and know that improvement is possible, keep telling yourself that over and over again. It helped me in my desperate hours. Sometimes it was minute to minute :( . Just mentioning because we feel your pain.
I'm so very glad you joined us and hope we can help you sort out your thoughts. MS lifelines should call you soon. Did your Dr. office get the script through? Once that is done, you'll get a call from one of the nurses. They are absolutely terrific I've found.
Hang in there and chat w/you soon,
Shell
You are amongst the minority here with a 'quick' diagnosis. I too, was diagnosed pretty quickly during my 1st big flair. I was not offered steroids during this flair. Not sure why, but regardless, it took months for me to see any improvement.
I started Rebif fairly quickly and have done well with it. The side affects for me have not been unbearable at all. But, like all meds, there is always the risk of having those on the list. Just have to weigh benefits vs risks.
I'm so sorry you can't sleep. You can't force this to go away that is for sure. Takes its own sweet time to see improvement and try as you may, you can't wish it away.
Just get through each hour best you can, and know that improvement is possible, keep telling yourself that over and over again. It helped me in my desperate hours. Sometimes it was minute to minute :( . Just mentioning because we feel your pain.
I'm so very glad you joined us and hope we can help you sort out your thoughts. MS lifelines should call you soon. Did your Dr. office get the script through? Once that is done, you'll get a call from one of the nurses. They are absolutely terrific I've found.
Hang in there and chat w/you soon,
Shell
I just wanted to add my welcome to this forum and say sorry about your dx but at least you know what is happening in your body and you can choose to do something about it. It sounds as if things have moved fairly quickly for you which is a good thing as it can take such a long time to go through the diagnostic stage.
The steroids do interfere with your sleep but hopefully it will not last too long (although I believe that they stay in your system for up to ten or fouteen days. Let's hope that they give you some renewed energy in the day and help your leg and other symptoms.
with love and hugs (from England)
Sarah x :)
The steroids do interfere with your sleep but hopefully it will not last too long (although I believe that they stay in your system for up to ten or fouteen days. Let's hope that they give you some renewed energy in the day and help your leg and other symptoms.
with love and hugs (from England)
Sarah x :)
Just woke up at 2:36 a.m., I can not sleep!! Thank you all for your very sweet and helpful comments.. Today has been a better day with the crying, but not with my walking.. I'm pretty sure that i had another attack today, my numbness has just about doubled and I'm dragging my left foot when i walk.. I"M GOING TO BE OKAY and get my life back!! I have 6 year old twins that need their MaMa to be active..
How long did it take the Rebif company to call? I will sure talk to my doctor about the copaxone..
How long did it take the Rebif company to call? I will sure talk to my doctor about the copaxone..
I am sorry to hear about your problems.
I have a positive LP. It showed 5+ Oligoclonal bands, elevated protein and elevated IGG levels. My MRI's, including the Brain, C,T, and L Spine have all been negative.
We are oposites!!! LOL
Good luck on the Rebif. I am now on Copaxone, which is a cake walk compared to Rebif. Everyone has different experiences with the interferons, but mine was horrible. It killed my thyroid function and caused me to be severely depressed! All of this on top of already being devestated by dealing with the fact I may have....or have MS. It made me have flu like symptoms constantly. I already felt horrible from my symptoms, and then adding the side effects of the Rebif, just made things so much worse.
I did stick with the Rebif therapy for 1 1/2 years, so I can say that i stuck with it , and did not give up. The Copaxone is wonderful!!!!!! No side effects, other than redness, itching and some swelling at the injection site, which lasts about 48 hours. The Copaxone made a huge improvement in my fatigue levels. They cannot state that you will have any improvement in your symptoms, because not everyone experiences any symptom improvement. However, my Neuro told me that about 50-60% of MS patients will experience some noticable improvement in their symptoms. Personally, I would highly recomment the Copaxone instead of the interferons.
Copaxone has been studied in people who have used the medication in excess of 15 years, with no adverse effects. Rebif, along with the other interferons, cannot say this. Most folks on the Interferons, have to discontinue the medications, due to elevated liver functions, or they will develope antibodies to the interferons. Please check with your doctor regarding all of this information. Again, I would recommend the Copaxone!!! (No they are not paying me to say this!) It has made such a difference in my life, which is why I am telling you all of this.
Good Luck
KIm (mrsmachine9)
I have a positive LP. It showed 5+ Oligoclonal bands, elevated protein and elevated IGG levels. My MRI's, including the Brain, C,T, and L Spine have all been negative.
We are oposites!!! LOL
Good luck on the Rebif. I am now on Copaxone, which is a cake walk compared to Rebif. Everyone has different experiences with the interferons, but mine was horrible. It killed my thyroid function and caused me to be severely depressed! All of this on top of already being devestated by dealing with the fact I may have....or have MS. It made me have flu like symptoms constantly. I already felt horrible from my symptoms, and then adding the side effects of the Rebif, just made things so much worse.
I did stick with the Rebif therapy for 1 1/2 years, so I can say that i stuck with it , and did not give up. The Copaxone is wonderful!!!!!! No side effects, other than redness, itching and some swelling at the injection site, which lasts about 48 hours. The Copaxone made a huge improvement in my fatigue levels. They cannot state that you will have any improvement in your symptoms, because not everyone experiences any symptom improvement. However, my Neuro told me that about 50-60% of MS patients will experience some noticable improvement in their symptoms. Personally, I would highly recomment the Copaxone instead of the interferons.
Copaxone has been studied in people who have used the medication in excess of 15 years, with no adverse effects. Rebif, along with the other interferons, cannot say this. Most folks on the Interferons, have to discontinue the medications, due to elevated liver functions, or they will develope antibodies to the interferons. Please check with your doctor regarding all of this information. Again, I would recommend the Copaxone!!! (No they are not paying me to say this!) It has made such a difference in my life, which is why I am telling you all of this.
Good Luck
KIm (mrsmachine9)
I am sorry that you have this diagnosis! But as everyone has been saying it seems like you choose a decent doctor who knows what he is doing! I hope you will find some comfort and relief here on this forum as I have! An MS diagnosis is hard to swallow but as you can see here you are NOT alone!!! Ill keep you in my thoughts and please keep us updated on how you are doing. If you need anything just give me a holler and I will do what I can!! Good luck!
Inny
Inny
Hello, and Welcome to the Forum :) Just sorry you have to be here!
I too am sorry of your dx. BUT, glad that you now have answers....
Just take a few days to let it sink in. You may have some ups and downs (emotionally) The MS Roller coaster.......That is totally Normal!
Are you saying that you are choosing Rebif??
Quix gave the statistics so now you see YEP it happens!!!!
Be Well,
~Tonya
Up to 10% of people with RRMS have a normal LP.
Up to 40% of PPMS have a normal LP.
q
Up to 40% of PPMS have a normal LP.
q
I just thought I would add my 2 cents I had been going through all of this myself and had the WRONG type of MRI done in the begining which still showed 2 leisons. Anyway I wanted to comment on the steroids. I just came off a 5 day course of IV steroids and they are MAJOR because of a flare that was actually dibilitating. I was homebound as my leg problems were worsening. Anyway the steroids have made a huge difference I am able to walk agian sometimes I need the cane as my left leg always been a prob is still weak. The side effects that I experienced were so worth it for me so you may want to check on them if you can. I had a home care nurse come to my house and set me up and then I was able to do it by myself every night takes about an hour. I don't know I was just sharing my experience. Good luck!
i will ask about the iv steroids? Nick was my 16 year old peekapoo.. Now we have a rotten yorkie..
Sorry to hear about your diagnosis but it sounds like your doctor is on top of things. Even though MS is the pits, if it must be, it's still better to have the diagnosis sooner rather than later.
Has your doctor suggested a course of IV steroids to help move those symptoms out a little quicker? It might be worth a try.
I think I remember hearing that the interferons like Rebif) are usually prescribed when there are definite spinal lesions.
Mary
(What breed is Nick?)
Has your doctor suggested a course of IV steroids to help move those symptoms out a little quicker? It might be worth a try.
I think I remember hearing that the interferons like Rebif) are usually prescribed when there are definite spinal lesions.
Mary
(What breed is Nick?)
My doctor called me today. My MRI of my neck and back showed lesions as well. I have a lesion on my brain stem and another one on my lower back.. The next step is Rebif??
talked to my doctor yesterday afternoon, he still thinks that it is MS. He just thinks that we did the lumbar testing early. He said after the MRI of my neck and back, then we will start medicine.. ANyone prefer one medicine over the other?
I had the optic neurtits test last week and thank goodness it came back normal.. I just want my sensory of my feet, legs and waist to come back.. What can the mri of my neck and back show up for ms?? I'm a wreck today..
Thank u,
Mandy
Thank u,
Mandy
I have what my doctor and everyone else I have talked to seem to call "classic" MS symptoms (Optic Neuritis and lessions on the MRI) yet nothing showed up on my LP either. After coming on here and reading (and reading, and reading) I found that early into the disease that sometimes nothing will show up on your LP.
I questioned my neuro about this and she said this is very true that early stages of MS do not show O-bands in some MS patients (along with all that other MS panel stuff you are speaking of!). It can take up to 7 years for O-bands to show up, according to the reading I have done.
So be happy to not be stuck in Limbo and to have a diagnosis - it might not be one that you wish to hear but it is not the end of the world either. I wish you luck in your journey and stick around, great group of people here!
MeLissa
I questioned my neuro about this and she said this is very true that early stages of MS do not show O-bands in some MS patients (along with all that other MS panel stuff you are speaking of!). It can take up to 7 years for O-bands to show up, according to the reading I have done.
So be happy to not be stuck in Limbo and to have a diagnosis - it might not be one that you wish to hear but it is not the end of the world either. I wish you luck in your journey and stick around, great group of people here!
MeLissa
Welcome. This is a great place to hang around and learn more about MS. I hope you don't have this MiSerable disease but it sounds like your doctor is definitely going that way. Yes, you can have MS with a negative LP - here is the health page JJ was talking about
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
Welcome again,
Lulu
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Can-you-Diagnose-MS-with-an-LP-that-is-Negative-for-O-bands/show/142?cid=36
Welcome again,
Lulu
COMMUNITY LEADER
Hey nickismydog,
Short answer is YES! Off the top of my head so dont quote me lol, its something like only 60 something percent of MSers that have a positive LP. I think you'll find it discussed in more detail, in the health pages, yellow icon top right of your screen.
Cheers.....JJ
Short answer is YES! Off the top of my head so dont quote me lol, its something like only 60 something percent of MSers that have a positive LP. I think you'll find it discussed in more detail, in the health pages, yellow icon top right of your screen.
Cheers.....JJ
my problems started in my feet and now 6 weeks later, the numbness or sensory loss is up to my waist..
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