Aa
Update. When life gives you lemons...
I don't really like lemonade so I'm gonna throw em away and make grape kool-aid instead! I thought quite a bit about what I was going to do if I was diagnosed and I decided that I will stay strong, stay positive and make the best out of this really crappy situation and do everything the dr tells me to do.
My MRI confirmed I have an old lesion on my brainstem that is currently active. Past symptoms and current symptoms correlate so my dr said we have two events separated by space and time. As of today he is diagnosing CIS and doing a LP on the 6th. He said if that is positive then he will move to Definite MS. Either way he is going to start a DMD when the results come back. Right now he said either the one that starts with an A weekly injection or the one that starts with R, sorry I can't remember what they are called.
Tomorrow I start a 5 day course of iv steroids and today I start b-12 injections, 50,000 units of vitamin d and folic acid as they were all deficient.
Can you all help me with what to expect with these meds and the iv steroids, side effects etc? I'm not worried about the b vitamins but I have no experience with the steroids, the D vitamin is an awe fully large dose so concerned with SE there and I am completely lost on the DMD's. I am confused by my Drs. choice of DMD's as, from what I read, they are strongly cautioned in patients with a seizure disorder (which I also have). Your experiences would be greatly appreciated.
Oh and I also decided to start chantix as well. I read that smoking can makes things worse and the disease progresses faster so wish me luck!
As always, thank you all SO much!
Trish
My MRI confirmed I have an old lesion on my brainstem that is currently active. Past symptoms and current symptoms correlate so my dr said we have two events separated by space and time. As of today he is diagnosing CIS and doing a LP on the 6th. He said if that is positive then he will move to Definite MS. Either way he is going to start a DMD when the results come back. Right now he said either the one that starts with an A weekly injection or the one that starts with R, sorry I can't remember what they are called.
Tomorrow I start a 5 day course of iv steroids and today I start b-12 injections, 50,000 units of vitamin d and folic acid as they were all deficient.
Can you all help me with what to expect with these meds and the iv steroids, side effects etc? I'm not worried about the b vitamins but I have no experience with the steroids, the D vitamin is an awe fully large dose so concerned with SE there and I am completely lost on the DMD's. I am confused by my Drs. choice of DMD's as, from what I read, they are strongly cautioned in patients with a seizure disorder (which I also have). Your experiences would be greatly appreciated.
Oh and I also decided to start chantix as well. I read that smoking can makes things worse and the disease progresses faster so wish me luck!
As always, thank you all SO much!
Trish
Well, I'm sorry for your diagnosis, but really glad your neuro has stepped up to the plate with early DMDs. He sounds like a keeper.
Hang in there, keep moving, stretching, laughing, working as long as you can, and, well... living.
Hang in there, keep moving, stretching, laughing, working as long as you can, and, well... living.
Hello everyone. I'm sorry I'm a day late responding like I said I would. :( hit a brick wall last night and not feeling very well at all. Lulu, can ya loan me some cherry kool-aid? Lol
Karry: steroids are giving me a bit of a problem, mainly nausea and shakiness and the metallic taste? Yuck gross go away! Nothing tastes right. Thank you for the info on the D studies, I did a bit of research on that yesterday morning and plan to look into it further. :) I'm gonna go to the store this weekend and buy a bigger slap stick for this pesky beast in my brain, lol. I've been too gentle I think lol. Hugs!
Corrie: hi and thanks for responding :) my doc said my 12 is too low to be anything but an absorption problem so shots for me forever. It's tiny though so I'll be ok with it. Glad you don't have to deal with that though! My GP and I decided it would be best to wait until after the steroids to start the chantix so I can separate side effect so I won't start them until next week. Best if luck to you too :)
Alex: hi! How was your birthday? It's great to hear you have such a wonderful support system :) I've been having my highs and lows but I try to keep the highs much higher. I'm pretty sure I do not like the steroids though, lol.
Kyle: your awesome as usual :). I had a dummy moment and apparently can't remember what I did 5 minutes ago today (lol) and responded to you on my other post with pretty much the same info here. I even told you I posted here, lol. Wow! I love my brain. I actually got a good laugh at myself when I realized this. Anyway, sorry to make ya read twice :)
I was kinda thinking the same thing when he said 2 events separated by space and time but as you said, he's the doc and one I actually like so I didn't argue this one. Especially given my history of being largely disregarded. I can relate to what you went through for those 20 years to a degree but mine didn't go on that long before I hit my not so lovely lottery :) I admire your strength to keep going. Oh and I have decided if and when I need a wheelchair I'm going with metallic pink, :) thank you once again for the smiles and encouragement!
Karry: steroids are giving me a bit of a problem, mainly nausea and shakiness and the metallic taste? Yuck gross go away! Nothing tastes right. Thank you for the info on the D studies, I did a bit of research on that yesterday morning and plan to look into it further. :) I'm gonna go to the store this weekend and buy a bigger slap stick for this pesky beast in my brain, lol. I've been too gentle I think lol. Hugs!
Corrie: hi and thanks for responding :) my doc said my 12 is too low to be anything but an absorption problem so shots for me forever. It's tiny though so I'll be ok with it. Glad you don't have to deal with that though! My GP and I decided it would be best to wait until after the steroids to start the chantix so I can separate side effect so I won't start them until next week. Best if luck to you too :)
Alex: hi! How was your birthday? It's great to hear you have such a wonderful support system :) I've been having my highs and lows but I try to keep the highs much higher. I'm pretty sure I do not like the steroids though, lol.
Kyle: your awesome as usual :). I had a dummy moment and apparently can't remember what I did 5 minutes ago today (lol) and responded to you on my other post with pretty much the same info here. I even told you I posted here, lol. Wow! I love my brain. I actually got a good laugh at myself when I realized this. Anyway, sorry to make ya read twice :)
I was kinda thinking the same thing when he said 2 events separated by space and time but as you said, he's the doc and one I actually like so I didn't argue this one. Especially given my history of being largely disregarded. I can relate to what you went through for those 20 years to a degree but mine didn't go on that long before I hit my not so lovely lottery :) I admire your strength to keep going. Oh and I have decided if and when I need a wheelchair I'm going with metallic pink, :) thank you once again for the smiles and encouragement!
So I planned on answering everyone this morning but work got away from me. Just wanted to let you all know I'll finish responding a little later today and to make sure no one thought I was ignoring them :)
Lulu, I like cherry too :) We can switch no problem! In fact my b-12 looks like cherry kool-aid anyway so even better, lol.
Thank you for the other info as well! I estimate that I have read the link you provided me not less than 15 times so far and expect I will continue to return to it.
My doc has MS listed as a specialty along with several others so I am not really sure if that qualifies as an MS Specialist? I have only seen him twice but I really do like him. He is the type of person that inspires almost instant trust which is pretty amazing considering I have fostered a distinct lack of trust and, probably extreme, wariness to the profession of Neurology as a whole given my experiences. There are a couple Docs I am literally contemplating going to see just to show them how wrong they were, specifically Dr. Shake the babybear.
Anyway, what amazed me yesterday was that he said, without promoting on my end, that he would be more than understanding and fully (ummm after 3 minutes staring at the screen I can't find the word but it means helpful and starts with a C... grrrr, it'll be back later) if I wanted a second opinion on this. I told him see thats why I like and trust you, you are funny, compassionate and not at all pretentious. I like that I can be myself with him and do not feel like I have to "dumb myself down" to protect his precious ego. :) This was also shortly after he reviewed my MRI and called the radiologist "lazy" and said "this is his only job, you'd think he would pay attention". The report said the lesion was not active but even I could see on the contrast pics it was.
Anyway, thanks much! I hope you enjoy your day! :)
oh! Cooperation! thats what I was looking for, lol darn Kool-aid!
Hugs
Thank you for the other info as well! I estimate that I have read the link you provided me not less than 15 times so far and expect I will continue to return to it.
My doc has MS listed as a specialty along with several others so I am not really sure if that qualifies as an MS Specialist? I have only seen him twice but I really do like him. He is the type of person that inspires almost instant trust which is pretty amazing considering I have fostered a distinct lack of trust and, probably extreme, wariness to the profession of Neurology as a whole given my experiences. There are a couple Docs I am literally contemplating going to see just to show them how wrong they were, specifically Dr. Shake the babybear.
Anyway, what amazed me yesterday was that he said, without promoting on my end, that he would be more than understanding and fully (ummm after 3 minutes staring at the screen I can't find the word but it means helpful and starts with a C... grrrr, it'll be back later) if I wanted a second opinion on this. I told him see thats why I like and trust you, you are funny, compassionate and not at all pretentious. I like that I can be myself with him and do not feel like I have to "dumb myself down" to protect his precious ego. :) This was also shortly after he reviewed my MRI and called the radiologist "lazy" and said "this is his only job, you'd think he would pay attention". The report said the lesion was not active but even I could see on the contrast pics it was.
Anyway, thanks much! I hope you enjoy your day! :)
oh! Cooperation! thats what I was looking for, lol darn Kool-aid!
Hugs
Hi BB -
I'm sorry to hear that you are now a member of the club. Being diagnosed with MS is scary. But it doesn't automatically mean they give you a drool cup and measure you for a wheelchair :-)
Many of us continue to lead pretty normal lives. My MS went undiagnosed, and thus untreated, for 20 years. By the time we figured it out I had graduated to SPMS. I still get myself up, dressed and off to work everyday. While MS does require some accommodation, I do whatever I can to keep it to a minimum.
As others have said, finding a Neuro who is willing to commit to a diagnosis is like winning the lottery. Although I'm a bit confused about his affirmation of your meeting the dissemination in space and time criteria but calling it CIS. If you have lesions of different vintages the current relapse is not isolated. But he's the doc :-)
You will be bombarded with info in the coming months. Ask us lots of questions :-)
Kyle
I'm sorry to hear that you are now a member of the club. Being diagnosed with MS is scary. But it doesn't automatically mean they give you a drool cup and measure you for a wheelchair :-)
Many of us continue to lead pretty normal lives. My MS went undiagnosed, and thus untreated, for 20 years. By the time we figured it out I had graduated to SPMS. I still get myself up, dressed and off to work everyday. While MS does require some accommodation, I do whatever I can to keep it to a minimum.
As others have said, finding a Neuro who is willing to commit to a diagnosis is like winning the lottery. Although I'm a bit confused about his affirmation of your meeting the dissemination in space and time criteria but calling it CIS. If you have lesions of different vintages the current relapse is not isolated. But he's the doc :-)
You will be bombarded with info in the coming months. Ask us lots of questions :-)
Kyle
I had a hard time the first year after diagnosis. Mostly I felt I was useless. I got over that I have a husband who loves me and lots of friends. The first year has lots of emotions. No one expects to be told they have MS. Even if you kinda suspect it is a shock.
Steroids wire me I am up for days. Everyone is different though. I take them for Cancer. At first I did not like them. The symptoms of chemo are worse than the steroids. Also I am real emotional. I warn my husband not to bring up anything that can spark an argument. I do not think clearly and am real emotional.
Alex
Steroids wire me I am up for days. Everyone is different though. I take them for Cancer. At first I did not like them. The symptoms of chemo are worse than the steroids. Also I am real emotional. I warn my husband not to bring up anything that can spark an argument. I do not think clearly and am real emotional.
Alex
Hi Trish, I am sorry for your news but glad that your neuro is looking after things nicely.
I currently take Rebif but am looking to switch to Tecfidera. No real issues with Rebif but after a year I look forward to a pill instead of a needle.
I also have a B12 deficiency but my doc never thought it was bad enough to do shots. I take a sublingual tablet that just dissolves under my tongue and it tastes fine. That might be an option for you once you have had a few shots. :-)
I have managed to avoid iv steroids but someone else will likely be able to provide some insight there.
Good luck with the smoking cessation! I will be trying to quit soon myself.
Take care,
Corrie
I currently take Rebif but am looking to switch to Tecfidera. No real issues with Rebif but after a year I look forward to a pill instead of a needle.
I also have a B12 deficiency but my doc never thought it was bad enough to do shots. I take a sublingual tablet that just dissolves under my tongue and it tastes fine. That might be an option for you once you have had a few shots. :-)
I have managed to avoid iv steroids but someone else will likely be able to provide some insight there.
Good luck with the smoking cessation! I will be trying to quit soon myself.
Take care,
Corrie
Hi Trish,
I am sorry about the dx. I am pleased that this Neuro has already started looking at the DMD's which are better started sooner rather than later. They do take some time to work so you could call them a long acting drug.
The IV steroids can cause some side effects in people & others have no problems whatsoever. I tend to have insomnia, metallic taste in the mouth, sometimes weight gain which is mainly fluid that will eventually pass, irritability & headache. If you are experiencing side effects please speak to your Neurologist & they sometimes have some tricks up their sleeve.
In regards to the vitamin D I would just highly recommend you keep an eye on your levels. You should not get any side effects from this. There are a number of studies going on around the globe at the moment to see if getting a persons vitamin D to the optimum level could actually slow down MS particularly when the person is early in the disease process. I also think there is a hope that it could keep people in CIS with high end levels of vitamin d. This is still running here in Australia so it will be interesting to hear the results in the coming years.
I would recommend you make contact with your local MS chapter when you are ready they can give you loads of information to get you started. Again I am sorry you have MS but glad to see you are prepared to slap the MS about a bit to settle it down. ;-)
Hugs,
Karry.
I am sorry about the dx. I am pleased that this Neuro has already started looking at the DMD's which are better started sooner rather than later. They do take some time to work so you could call them a long acting drug.
The IV steroids can cause some side effects in people & others have no problems whatsoever. I tend to have insomnia, metallic taste in the mouth, sometimes weight gain which is mainly fluid that will eventually pass, irritability & headache. If you are experiencing side effects please speak to your Neurologist & they sometimes have some tricks up their sleeve.
In regards to the vitamin D I would just highly recommend you keep an eye on your levels. You should not get any side effects from this. There are a number of studies going on around the globe at the moment to see if getting a persons vitamin D to the optimum level could actually slow down MS particularly when the person is early in the disease process. I also think there is a hope that it could keep people in CIS with high end levels of vitamin d. This is still running here in Australia so it will be interesting to hear the results in the coming years.
I would recommend you make contact with your local MS chapter when you are ready they can give you loads of information to get you started. Again I am sorry you have MS but glad to see you are prepared to slap the MS about a bit to settle it down. ;-)
Hugs,
Karry.
Trish, so sorry to read all of this but I am glad your neuro is moving forward with the testing and treatment.
Chantix is great and a good choice to help quit smoking - good luck because as a former I can tell you it is tough.
there are some drugs that have an increased risk profile with seizure disorders so you need to discuss this further with your doctor - the NMSS says this about Avonex -
"Seizures
Avonex should be used with caution in individuals with a seizure disorder. A few individuals with no prior history of seizures have experienced seizures while on Avonex. Since seizures are known to occur somewhat more frequently in people with MS than in the general population, it is not known whether these seizures were related to the MS, to the medication, or to some combination of the two."
http://www.nationalmssociety.org/Treating-MS/Medications/Avonex
The same with the Rebif-
"Seizures
Rebif should be used with caution in individuals with a seizure disorder since seizures have been associated with the use of beta interferon medications.
Because of the potential of Rebif to affect the levels of white blood cells, "
http://www.nationalmssociety.org/Treating-MS/Medications/Rebif
I would definitely go back and talk about your concerns and ask about other options.
Is this neurologist an MS Specialist? He might not know the latest drugs available and just recommending these tried and true drugs.
The NMSS site has a great roundup of drug information, including both the DMDs and the drugs used to treat symptoms - i hope you will take some time to read these over so you can have an informed discussion with your doctor.
http://www.nationalmssociety.org/Treating-MS/Medications
I'm sorry you have MS but glad you are getting on treatment and moving forward. Please let us know what other questions you might be considering - someone here will be bound to help.. hugs, Laura
Chantix is great and a good choice to help quit smoking - good luck because as a former I can tell you it is tough.
there are some drugs that have an increased risk profile with seizure disorders so you need to discuss this further with your doctor - the NMSS says this about Avonex -
"Seizures
Avonex should be used with caution in individuals with a seizure disorder. A few individuals with no prior history of seizures have experienced seizures while on Avonex. Since seizures are known to occur somewhat more frequently in people with MS than in the general population, it is not known whether these seizures were related to the MS, to the medication, or to some combination of the two."
http://www.nationalmssociety.org/Treating-MS/Medications/Avonex
The same with the Rebif-
"Seizures
Rebif should be used with caution in individuals with a seizure disorder since seizures have been associated with the use of beta interferon medications.
Because of the potential of Rebif to affect the levels of white blood cells, "
http://www.nationalmssociety.org/Treating-MS/Medications/Rebif
I would definitely go back and talk about your concerns and ask about other options.
Is this neurologist an MS Specialist? He might not know the latest drugs available and just recommending these tried and true drugs.
The NMSS site has a great roundup of drug information, including both the DMDs and the drugs used to treat symptoms - i hope you will take some time to read these over so you can have an informed discussion with your doctor.
http://www.nationalmssociety.org/Treating-MS/Medications
I'm sorry you have MS but glad you are getting on treatment and moving forward. Please let us know what other questions you might be considering - someone here will be bound to help.. hugs, Laura
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
