Nenu
03-05-2008, 04:21 PM
My neurologist got the results of blood work and spinal back today, and said he's 95% sure it is in fact MS, and that I have been living with this for at least 5 years of my life now (I'm 31).
It's nice to finally have answers where for so long, I didn't have them. I went to work in pain, popping over the counter headache medicine, trying to eek out a living so to speak.
It was I who insisted that the MRI be completed, because after being told over and over "You're incredibly healthy", when knowing in my gut that I was far from being incredibly healthy.
So moving ahead, this should be quite a journey to say the least. I'm not sure of the number of lesions that were found (I'll have to get all the details from my doctor, when I am set up), but the neuro did say a considerable amount were found. I'm just keeping a positive attitude now, dopey from all these steroids I have been fed for the last few days, and looking forward at my future and what I can do to live my life to it's fullest. :angel:
It's nice to finally have answers where for so long, I didn't have them. I went to work in pain, popping over the counter headache medicine, trying to eek out a living so to speak.
It was I who insisted that the MRI be completed, because after being told over and over "You're incredibly healthy", when knowing in my gut that I was far from being incredibly healthy.
So moving ahead, this should be quite a journey to say the least. I'm not sure of the number of lesions that were found (I'll have to get all the details from my doctor, when I am set up), but the neuro did say a considerable amount were found. I'm just keeping a positive attitude now, dopey from all these steroids I have been fed for the last few days, and looking forward at my future and what I can do to live my life to it's fullest. :angel:
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limpster
03-06-2008, 10:38 AM
I am sorry you got the dx but happy that you are no longer in limboland.
I too have MS and you just need to find your new NORMAL.
Has the doc suggested any of the dmd's yet for you?
There is so much information out there re: MS. You can also contact the National MS society. They will send you all types of materials re: MS.
Good luck on your journey:angel:
I too have MS and you just need to find your new NORMAL.
Has the doc suggested any of the dmd's yet for you?
There is so much information out there re: MS. You can also contact the National MS society. They will send you all types of materials re: MS.
Good luck on your journey:angel:
Nenu
03-06-2008, 09:22 PM
I'm still learning acronyms here, dmd? Right now, as I did not have a family doctor at the time of diagnosis, I'm only currently on prednisone (oral now) until they establish other medication. Luckily with the diagnosis, I now have a family doctor, but getting to see her will be a few days at least (doctors here are swamped). I had to sign the release of information forms today for MS drugs to the drug company and such.
Suffered yet another not so pleasant headache (probably due to spinal again) and laid down immediately. Luckily it went away without incident and the roids started their magic. ;) So I am feeling pretty good now, still a tiny bit of head discomfort, but I was elated to find that my sense of smell and taste are returning to normal (for a long time, I was without either for the most part).
I now have the tinglies down the inside of my right leg. Nothing too overwhelming, just the faint sensation. If I feel cruddy, I just lay down for a bit and things work themselves out. Going to be quite a healing process for me, going so long without this diagnosis I'm sure. I'm just happy as I said to finally have the answer, and be on the right path to proper treatment.
Suffered yet another not so pleasant headache (probably due to spinal again) and laid down immediately. Luckily it went away without incident and the roids started their magic. ;) So I am feeling pretty good now, still a tiny bit of head discomfort, but I was elated to find that my sense of smell and taste are returning to normal (for a long time, I was without either for the most part).
I now have the tinglies down the inside of my right leg. Nothing too overwhelming, just the faint sensation. If I feel cruddy, I just lay down for a bit and things work themselves out. Going to be quite a healing process for me, going so long without this diagnosis I'm sure. I'm just happy as I said to finally have the answer, and be on the right path to proper treatment.
MSJayhawk
03-06-2008, 10:57 PM
My neurologist got the results of blood work and spinal back today, and said he's 95% sure it is in fact MS, and that I have been living with this for at least 5 years of my life now (I'm 31).
It's nice to finally have answers where for so long, I didn't have them. I went to work in pain, popping over the counter headache medicine, trying to eek out a living so to speak.
It was I who insisted that the MRI be completed, because after being told over and over "You're incredibly healthy", when knowing in my gut that I was far from being incredibly healthy.
So moving ahead, this should be quite a journey to say the least. I'm not sure of the number of lesions that were found (I'll have to get all the details from my doctor, when I am set up), but the neuro did say a considerable amount were found. I'm just keeping a positive attitude now, dopey from all these steroids I have been fed for the last few days, and looking forward at my future and what I can do to live my life to it's fullest. :angel:
Congratulations on your diagnosis. Although it is not what you wanted to hear, your positive attitude will greatly help you in the long run. There will be days that may bring you down, but seek the positive and you should go quite far!
It's nice to finally have answers where for so long, I didn't have them. I went to work in pain, popping over the counter headache medicine, trying to eek out a living so to speak.
It was I who insisted that the MRI be completed, because after being told over and over "You're incredibly healthy", when knowing in my gut that I was far from being incredibly healthy.
So moving ahead, this should be quite a journey to say the least. I'm not sure of the number of lesions that were found (I'll have to get all the details from my doctor, when I am set up), but the neuro did say a considerable amount were found. I'm just keeping a positive attitude now, dopey from all these steroids I have been fed for the last few days, and looking forward at my future and what I can do to live my life to it's fullest. :angel:
Congratulations on your diagnosis. Although it is not what you wanted to hear, your positive attitude will greatly help you in the long run. There will be days that may bring you down, but seek the positive and you should go quite far!
Nenu
03-06-2008, 11:42 PM
It's not what I'd have wanted to hear so to speak, but I knew the problems weren't going anywhere. Now I have a recognizable disease to work with, and luckily it is well known and there is a lot of help and research in place.
So yes, I am very positive knowing now that I do have this, and that it is something that can be treated to any degree. :)
So yes, I am very positive knowing now that I do have this, and that it is something that can be treated to any degree. :)
MSNik
03-07-2008, 06:42 AM
Hi Nenu. Just for the record, DMD is diseas modifying drugs...these are Copaxone, Betaseron, Avonex, Rebif and Tysabri....if you have a definate dx, they will probably start telling you to get on one of the first four immediately...Tysbari is usually not a first line of defense drug.
And, you do have a choice to do this or not do this. Plenty of people choose NOT to take the drugs and do well. Its a very personal decision.
I would question why your Neuro is going to work with a family doc on treatment for you. family docs USUSALLY have next to no knowledge about MS....youre lucky to find a regular Neuro who keeps up on the studies/meds and optioins....what you truly need is a MS Specialist at this ponit to help you get thru the first year or 18 months, watch you for changes, order your MRIs and if you go on DMD drugs, to monitor you. A family guy isnt going to know what to look for, or what blood work needs to be done quarterly if you go on DMDs....why not find a good MS guy and stick with him every 6 months and then use your family guy to do what they do best??
Dont worry about how many lesions you have- its not important. I have more lesions then my MS Specialist has seen in any of his patients, and he has well over 3000 patients ...I have over 50 lesions. I stll work fulltime, take care of a home and familiy fulltime- cook, clean and ride horses when its not too hot outside. Number of lesions means nothing in the grand scheme of things....so dont fixate on that. If you have enough to meet the mcDonald criteria, and the symtoms to match, then you have a dx....
take good care of yourself.
Nikki
And, you do have a choice to do this or not do this. Plenty of people choose NOT to take the drugs and do well. Its a very personal decision.
I would question why your Neuro is going to work with a family doc on treatment for you. family docs USUSALLY have next to no knowledge about MS....youre lucky to find a regular Neuro who keeps up on the studies/meds and optioins....what you truly need is a MS Specialist at this ponit to help you get thru the first year or 18 months, watch you for changes, order your MRIs and if you go on DMD drugs, to monitor you. A family guy isnt going to know what to look for, or what blood work needs to be done quarterly if you go on DMDs....why not find a good MS guy and stick with him every 6 months and then use your family guy to do what they do best??
Dont worry about how many lesions you have- its not important. I have more lesions then my MS Specialist has seen in any of his patients, and he has well over 3000 patients ...I have over 50 lesions. I stll work fulltime, take care of a home and familiy fulltime- cook, clean and ride horses when its not too hot outside. Number of lesions means nothing in the grand scheme of things....so dont fixate on that. If you have enough to meet the mcDonald criteria, and the symtoms to match, then you have a dx....
take good care of yourself.
Nikki
Nenu
03-07-2008, 06:52 AM
I did sign the release of information form for Copaxone (sp?) yesterday. So that's the first one proposed. I'm still working with this neurologist, he's not going away :) But I did need a family doctor here in town, because I didn't have one what so ever to begin with (our area is struggling to meet the needs of the public in this area). I needed the family doctor mostly to be a person to hold my records, which are scattered all over the place currently, and be a go between with my case worker who's managing this since I have been out of work for over a year on long term.
I wonder what the upsides/downsides of deciding to take or not take these drugs are. I guess I'll have to sit down and have a long talk with an MS specialist, because I am very clueless about what the next steps to take are at this point. I keep reading about injections... which makes me shudder. I can handle needles that are given to me by another person. I can't even imagine giving myself a needle. :(
On the subject of MRIs... I don't know how they're going to handle these. I'm allergic to iodine, as I found out having my lumbar completed. The contrast contains iodine. My father is deathly allergic to this (I come to find out). I assume to see active lesions they do require the contrast?
I wonder what the upsides/downsides of deciding to take or not take these drugs are. I guess I'll have to sit down and have a long talk with an MS specialist, because I am very clueless about what the next steps to take are at this point. I keep reading about injections... which makes me shudder. I can handle needles that are given to me by another person. I can't even imagine giving myself a needle. :(
On the subject of MRIs... I don't know how they're going to handle these. I'm allergic to iodine, as I found out having my lumbar completed. The contrast contains iodine. My father is deathly allergic to this (I come to find out). I assume to see active lesions they do require the contrast?
MSNik
03-07-2008, 08:54 AM
actually, for the record Nenu, MRI contrast IS NOT IODINE. I am deathly allergic to it too, and in the past couldnt have CT scans becasue of it, that is an ionic based solution...however, as times have changed, they no longer use that in many facilities either. You need to talk to the MRI center and verify this, but I know for a fact that the contrast agent used in an MRI is Gadolinium, which is NOT idodine based...
As far as having your PCP monitor all that you are doing, that makes sense. Some of us use our PCPs to track everything that goes on....truthfully, Ive kind of turned my NEuro into my PCP...betweeen him and my GYN, those are the only two docs I see regularly...and I see my MS specialist twice a year.
Copaxone is a good drug. Its synthetic, not one of the interferons, which means that you wont get the flu like symptoms with it...the only bad thing Ive ever heard of with Copaxone are sight injection reactions, which are lumps under the skin from injecting...not having ever taken Copaxone, Ill stop there and let the ones who are on it offer you more insight. This is a drug that you inject daily however; were you aware that their are others on the market which are 3 times a week or even once a week? Just to ask...
You DO need to learn to do this by yourself. Let me tell you, my husband did my injections for the first month- I was terrified. When he and I got into a fight one night, he withheld my shot...literally wouldnt do it. He had me so upset that I put myself into a relapse and wound up in the hospital! It was horrible. I swore that very night that I wouldnt let myself be dependent on anyone ever again for my health....and you know what? Since then I have been able to travel, work and be on the road overnight, without him, and not have to worry about it. Its a very good feeling to be independent..Im looking now, into a job which if I were to get- Id have to be gone for 5 weeks for training out of state- they will fly me home on weekends, but in between, Id have to deal with all this myself. And, guess what? I can do it. I know I can.
But for now- off to accupuncture -- continue feeling good Nenu; youre going to survive this, the waiting was the hard part. 6 months from when you start your meds, youre going to feel like your old self!
Hugs
Nikki
As far as having your PCP monitor all that you are doing, that makes sense. Some of us use our PCPs to track everything that goes on....truthfully, Ive kind of turned my NEuro into my PCP...betweeen him and my GYN, those are the only two docs I see regularly...and I see my MS specialist twice a year.
Copaxone is a good drug. Its synthetic, not one of the interferons, which means that you wont get the flu like symptoms with it...the only bad thing Ive ever heard of with Copaxone are sight injection reactions, which are lumps under the skin from injecting...not having ever taken Copaxone, Ill stop there and let the ones who are on it offer you more insight. This is a drug that you inject daily however; were you aware that their are others on the market which are 3 times a week or even once a week? Just to ask...
You DO need to learn to do this by yourself. Let me tell you, my husband did my injections for the first month- I was terrified. When he and I got into a fight one night, he withheld my shot...literally wouldnt do it. He had me so upset that I put myself into a relapse and wound up in the hospital! It was horrible. I swore that very night that I wouldnt let myself be dependent on anyone ever again for my health....and you know what? Since then I have been able to travel, work and be on the road overnight, without him, and not have to worry about it. Its a very good feeling to be independent..Im looking now, into a job which if I were to get- Id have to be gone for 5 weeks for training out of state- they will fly me home on weekends, but in between, Id have to deal with all this myself. And, guess what? I can do it. I know I can.
But for now- off to accupuncture -- continue feeling good Nenu; youre going to survive this, the waiting was the hard part. 6 months from when you start your meds, youre going to feel like your old self!
Hugs
Nikki
Nenu
03-08-2008, 12:08 AM
Hrm interesting. I asked about what was in the contrast at the hospital here, and was told iodine, and I know for a fact that's what was in the contrasts my father had. Maybe a Canadian thing? Or perhaps it's another ingredient in the contrast that is bothersome. I have a slew of allergies, so it's hard to single out things sometimes. I certainly hope you're correct and that it does not contain iodine :)
That's horrible about your husband and withholding the shots. I will have to do this on my own, because I am a single woman living by myself. I really have no other options. I look at it like this. Nothing could be worse, even giving myself injections, than going through the suffering I have for so long. I've hardened myself to pain by this point, so once I get past the initial jitters I'll be on my way. I just have to keep thinking that millions of people have to self inject daily for various conditions.
As far as the different drug types, I haven't been into that discussion quite yet. Everything is still very fresh and new. I'll be sure to ask about my options. I think the reasoning behind this particular medication is cost, and I believe this is the one that is fully covered by our medical based on my income bracket. I do also have coverage through my employer for medical however, so there's other options.
My neuro's best advice, and I fully agree with him, was "Do not leave your job". I love my job, and I receive excellent benefits through it. He's correct. The paycheque is not the important part, the benefits are. If I were to lose what I have in benefits, that would be a bigger hit to me than leaving to find a higher paying position elsewhere. Not that there isn't room for advancement in my current field of work :)
Right now, I am just feeling disgusting from taking these steroids. I know they're slowly helping things sort themselves, but they make my head feel hot and fuzzy, make me dehydrated, make me want to eat every 2 minutes... I hate how they're making me feel in a nutshell haha. I'm just sleeping when I can to get through the side effects of them. I hate being out of sorts from medication.
That's horrible about your husband and withholding the shots. I will have to do this on my own, because I am a single woman living by myself. I really have no other options. I look at it like this. Nothing could be worse, even giving myself injections, than going through the suffering I have for so long. I've hardened myself to pain by this point, so once I get past the initial jitters I'll be on my way. I just have to keep thinking that millions of people have to self inject daily for various conditions.
As far as the different drug types, I haven't been into that discussion quite yet. Everything is still very fresh and new. I'll be sure to ask about my options. I think the reasoning behind this particular medication is cost, and I believe this is the one that is fully covered by our medical based on my income bracket. I do also have coverage through my employer for medical however, so there's other options.
My neuro's best advice, and I fully agree with him, was "Do not leave your job". I love my job, and I receive excellent benefits through it. He's correct. The paycheque is not the important part, the benefits are. If I were to lose what I have in benefits, that would be a bigger hit to me than leaving to find a higher paying position elsewhere. Not that there isn't room for advancement in my current field of work :)
Right now, I am just feeling disgusting from taking these steroids. I know they're slowly helping things sort themselves, but they make my head feel hot and fuzzy, make me dehydrated, make me want to eat every 2 minutes... I hate how they're making me feel in a nutshell haha. I'm just sleeping when I can to get through the side effects of them. I hate being out of sorts from medication.
mousemau
03-08-2008, 09:13 AM
hi nenu...i to have injections which i give myself i used to be terrified of needles but i got a autoject machine from the ms society which helps me a lot (i still don't think i could inject myself without it) i have been doing this for 4 or 5 years now and am on betasoran which i inject every 2nd night the society also has sharps containers and al sorts of information they can send you also a video on how to inject and where i have found i anm only able to inject in my behind as the stomach and legs and arms were causing me problems but its a trial and error thing ihope this helps you with my experience ...
hugs to you
;)
maureen
hugs to you
;)
maureen
Nenu
03-08-2008, 09:53 AM
hi nenu...i to have injections which i give myself i used to be terrified of needles but i got a autoject machine from the ms society which helps me a lot (i still don't think i could inject myself without it) i have been doing this for 4 or 5 years now and am on betasoran which i inject every 2nd night the society also has sharps containers and al sorts of information they can send you also a video on how to inject and where i have found i anm only able to inject in my behind as the stomach and legs and arms were causing me problems but its a trial and error thing ihope this helps you with my experience ...
hugs to you
;)
maureen
Oh nice information. :) Hopefully something similar is available for me.
hugs to you
;)
maureen
Oh nice information. :) Hopefully something similar is available for me.