Aa
Diagnosis
I last posted about a week ago with my fears and gut feeling that I had MS. My scan showed a new active lesion on the brain but luckily no lesions on spine showed up. My blood tests were all normal so this eliminated other illnesses and he said I have had 3 serious neroulogical incidents since October and the last one was heat induced when our central heating came on at night by mistake and I woke up veyr hot and with pins and needles all down left side, My gut feeling was right and on Thursday my neurologist confirmed that I have MS relapsing and remitting and am currently in a relapse (which I was aware of!) He put me straight away onto strong oral steroids 500 (methylprednisolone) which I took this morning and they tasted disgusting. I am hoping that I do not have any major side effects. I am waiting for an appointment at the hospital to see a new MS specialist to discuss treatment but my neurologist said i would be an ideal candidate for interferon.I have read up a little on them and obviously it is a personal decision what it right for you..but i hate needles/blood tests so this will be a challenge. Someone said to me that the under skin ones which are more frequent are easier to do and less painful than the deep muscle one so what are your feelings about this? I go for evoked eye potential tests on Thursday but neurologist said he did not need results to diagnose as MRi was very clear and symptoms/history. So I guess I have been lucky to get a diagnosis quickly within 6 weeks when I read how long it takes some people. At least now I can understand what I am feeling in my body, manage it and get on with life. I know that emotions will be a rollercoaster on this MS journey but as I am a professional counsellor I am aware that they are for many other people too. It is reassuring to have access to this forum to seek support from those who understand and I hope to get to know some of you better in the future. Love Sarah ;) xxx
PS Any tips on the best way to tell or give information to teenage children?
PS Any tips on the best way to tell or give information to teenage children?
Hey, Sparky! Welcome to our band of little rascals. ;-)
You were asking about DMDs, I think?
My doc didn't give me any idea about which one to take - I looked at the stats for each one, and picked out Copaxone as the least unpleasant.
I like it just fine, but you have to be careful about injection sites - always inject into the fatty areas.
It slows progression and has been shown to slow disability as well over the long term.
I don't know how things are in the NHS - you may be stuck with what they give you.
Best of luck! Feel free to ask anything.
You were asking about DMDs, I think?
My doc didn't give me any idea about which one to take - I looked at the stats for each one, and picked out Copaxone as the least unpleasant.
I like it just fine, but you have to be careful about injection sites - always inject into the fatty areas.
It slows progression and has been shown to slow disability as well over the long term.
I don't know how things are in the NHS - you may be stuck with what they give you.
Best of luck! Feel free to ask anything.
Hay, there, Sparky! Welcome to our side of the mountain. The whole thing s*cks ditchwater, but it is manageable. We're here for all the ups and downs and questions you'll go through. I am glad you didn't have to spend time in Limboland. That place is worse than getting a diagnosis.
Remember not to try to do too much. Almost everything can wait for tomorrow and what can't is usually doable today.
I hope treatment doesn't become an issue.
Quix
Remember not to try to do too much. Almost everything can wait for tomorrow and what can't is usually doable today.
I hope treatment doesn't become an issue.
Quix
There is not really much left to say as everyone else pretty much summed
it up. I too wanted to chime in and tell you that I am sorry about your dx
but glad that you now have confirmation.
Take Care,
~Tonya
it up. I too wanted to chime in and tell you that I am sorry about your dx
but glad that you now have confirmation.
Take Care,
~Tonya
Sorry to hear of your diagnosis but glad you are here to share it with us. this is a great place for info, venting, ranting and even a few laughs.
Most of the others have already given you some really good advice. Just learn as much as you can on your timetable. Some days will be tough, others great. It's the roller-coaster everyone mentions.
As for the telling the teenage kids, I think mine were relieved to finally know what was wrong with mom. all were told at once and told to come talk to with anytime with more questions. They only asked a few things at first but slowly have opened up. They were ALL there to learn about The Copaxone teaching , which made me proud that they were interested and cared...along with a few evil winks of the eyes about previous discipline paybacks, lol.
My college age kids, each chose MS as a topic to do in school as a presentation, unbeknown to me until after the fact. They learned for themselves , then chose to ask questions. I 'm sure each child and family is different but this is how it was handled in my home.
I send best wishes to you and welcome you aboard !
Ren
Most of the others have already given you some really good advice. Just learn as much as you can on your timetable. Some days will be tough, others great. It's the roller-coaster everyone mentions.
As for the telling the teenage kids, I think mine were relieved to finally know what was wrong with mom. all were told at once and told to come talk to with anytime with more questions. They only asked a few things at first but slowly have opened up. They were ALL there to learn about The Copaxone teaching , which made me proud that they were interested and cared...along with a few evil winks of the eyes about previous discipline paybacks, lol.
My college age kids, each chose MS as a topic to do in school as a presentation, unbeknown to me until after the fact. They learned for themselves , then chose to ask questions. I 'm sure each child and family is different but this is how it was handled in my home.
I send best wishes to you and welcome you aboard !
Ren
Sarah,
That makes a lot of sense - we don't have many folks here who go private and skip the NHS for the early part of dx'ing. It sounds like that investment of money paid off for you.
Hang in there - like Julie wrote, give youself time to absorb all of this. Its a lot to wrap your mind around.
my best,
L
That makes a lot of sense - we don't have many folks here who go private and skip the NHS for the early part of dx'ing. It sounds like that investment of money paid off for you.
Hang in there - like Julie wrote, give youself time to absorb all of this. Its a lot to wrap your mind around.
my best,
L
I am sorry to hear you have MS, but a diagnosis does help with knowing what you need to do and this forum is also a great place to bounce your questions and concerns about your new reality.
I am also sorry to hear your hubby is in Afghanistan. Good news is he'll be home before you know it. I got my dx in May 2009 when my husband was finishing up a 1 year tour in Afghanistan. He got home a month later and as hard as it was to go through hearing the diagnosis without him, I was just relieved to have him back safely.
I am on Copaxone and seem to be doing alright. The subcutaneous, under the skin, injections are not so bad after you get used to it. Hopefully we will be seeing an oral drug soon. Have you thought about being in a clinical trial for RRMS? The NHS could probably tell you about one you'd be eligible for since you are newly diagnosed. There is an oral drug that you have to be newly diagnosed to get on. It might be worth looking into.
In the meantime, let this all settle in. Talk to your family and friends and us of course. And most important, remember that MS is not in control of your life, you are. Be positive and proactive and learn everything you need to know about it and you will do fine.
Lots of hugs,
Julie (Sarahsmom)
I am also sorry to hear your hubby is in Afghanistan. Good news is he'll be home before you know it. I got my dx in May 2009 when my husband was finishing up a 1 year tour in Afghanistan. He got home a month later and as hard as it was to go through hearing the diagnosis without him, I was just relieved to have him back safely.
I am on Copaxone and seem to be doing alright. The subcutaneous, under the skin, injections are not so bad after you get used to it. Hopefully we will be seeing an oral drug soon. Have you thought about being in a clinical trial for RRMS? The NHS could probably tell you about one you'd be eligible for since you are newly diagnosed. There is an oral drug that you have to be newly diagnosed to get on. It might be worth looking into.
In the meantime, let this all settle in. Talk to your family and friends and us of course. And most important, remember that MS is not in control of your life, you are. Be positive and proactive and learn everything you need to know about it and you will do fine.
Lots of hugs,
Julie (Sarahsmom)
I just wanted to clarify that I was fortunate I think to get the diagnosis so quickly because we went privately on medical healt insurance and not on the NHS although now I will be referred to the NHS for further ongoing treatment.
Also I had MRI scan initially as I had mild hearing loss and they were checking for acute neuroma (tumour) but found scarring instead and so was referred very quickly to neurologist for different more detailed scan and the rest is history.
Trying to be well but feeling more exhausted than I can ever remember and I am doing nothing except what is necessary. Hope this relapse doesn't last for long (in third week now and it feels like an age).
Missing my husband who has been in Afghanistan for 2 weeks and does not return till August...timing is ****!
Love Sarah
Also I had MRI scan initially as I had mild hearing loss and they were checking for acute neuroma (tumour) but found scarring instead and so was referred very quickly to neurologist for different more detailed scan and the rest is history.
Trying to be well but feeling more exhausted than I can ever remember and I am doing nothing except what is necessary. Hope this relapse doesn't last for long (in third week now and it feels like an age).
Missing my husband who has been in Afghanistan for 2 weeks and does not return till August...timing is ****!
Love Sarah
Sarah,
Some of us get *lucky* in the sprint up the diagnosis mountain and get to the other side in a hurry. I'm sorry you're over here with us, and hate to hear that you have this MiSerable disease, but am happy for you that you didn't have to wait long. You're lucky that you know what MonSter you are battling and can arm yourself with the best available resources.
Your case must be very classic for someone on the NHS to get this fast of a dx and get approval for drugs. Be thankful for all of that, because we have many UK members who are stymied in the system.
There is an excellent site from the UK that I refer everyone to when the question of *which one* comes up .... check out
http://www.msdecisions.org.uk/
This site will talk you through what is important to you in your therapy and help you to decide which of the four approved therapies might be the best. Please keep in mind that no one DMD is proven to be more effective than the next - they all have around the same rate of slowing the relapse rate. Unfortunately these drugs do not cure MS, but can help to keep it manageable.
Welcome again and I hope to see you around,
be well, Lulu
Some of us get *lucky* in the sprint up the diagnosis mountain and get to the other side in a hurry. I'm sorry you're over here with us, and hate to hear that you have this MiSerable disease, but am happy for you that you didn't have to wait long. You're lucky that you know what MonSter you are battling and can arm yourself with the best available resources.
Your case must be very classic for someone on the NHS to get this fast of a dx and get approval for drugs. Be thankful for all of that, because we have many UK members who are stymied in the system.
There is an excellent site from the UK that I refer everyone to when the question of *which one* comes up .... check out
http://www.msdecisions.org.uk/
This site will talk you through what is important to you in your therapy and help you to decide which of the four approved therapies might be the best. Please keep in mind that no one DMD is proven to be more effective than the next - they all have around the same rate of slowing the relapse rate. Unfortunately these drugs do not cure MS, but can help to keep it manageable.
Welcome again and I hope to see you around,
be well, Lulu
Really helpful info and links etc..it is all so new and there is so much to find out and think about and I am feeling just so tired so am having to just pace myself but luckily can sit using the laptop with my legs up without exerting too much effort. I will check out the links you suggested and many thanks xxx
Hi Alex
Thanks for your comments and for the tip about breaking things up..this is really helpful
for a newcomer like me.
I will not become the label and remain the person I always have been, but with an understanding now of why I have felt so fatigued for so long.
Sarah
Thanks for your comments and for the tip about breaking things up..this is really helpful
for a newcomer like me.
I will not become the label and remain the person I always have been, but with an understanding now of why I have felt so fatigued for so long.
Sarah
The National MS Society is a great place to start looking for information like telling your kids about MS. Here is a link to a brochure about telling your teens:
www.nationalmssociety.org/download.aspx?id=319
Here's the National MS Society web site:
http://www.nationalmssociety.org/index.aspx
I also subscribe to a couple of magazines that are wonderful.
Momementum:
http://www.nationalmssociety.org/index.aspx
Neurology Now:
http://journals.lww.com/neurologynow/pages/default.aspx
When I shared that I had MS with my daughters, one was a teen and the other late teens/early twenties, the first question that popped up was the one if I was going to die or not--which was an easy one to answer because MS is not fatal.
They were also concerned if they were going to get the disease or not. You can find the exact numbers on this somewhere, but the number is pretty low. Your teens may not grasp the real reality of these numbers and focus in on the "what-ifs". Maybe a little example of how low the numbers are actually may help.
I would give them an explanation of what MS in medical terms. Your teens will appreciate this better being talked to like adults. Try to stay as positive as possible. It's easy to turn it negative by mentioning things that they need to be doing for you like cleaning that room that they don't clean or doing this chore or that, etc. They're likely to begin feeling guilty about this, and may even think that you've been fatigued unnecessarily by something they've done. However, you may want to mention that part of the disease does involve fatigue and weakness, and that you may need occasional breaks and rest.
Trying to figure out what medicine to take is also a hard one. Read here on this forum about people's experiences, do research yourself, and make a separate post about DMD's to get other people's input. I guess above all, your neuro is the best place to get information. Ask him about the medicine he thinks is best. My neuro didn't have a preference for one over the other (if he did, he didn't share). He gave me lots of DVDs to watch from all of the different medicines.
Best wishes, and keep us posted!
Deb
www.nationalmssociety.org/download.aspx?id=319
Here's the National MS Society web site:
http://www.nationalmssociety.org/index.aspx
I also subscribe to a couple of magazines that are wonderful.
Momementum:
http://www.nationalmssociety.org/index.aspx
Neurology Now:
http://journals.lww.com/neurologynow/pages/default.aspx
When I shared that I had MS with my daughters, one was a teen and the other late teens/early twenties, the first question that popped up was the one if I was going to die or not--which was an easy one to answer because MS is not fatal.
They were also concerned if they were going to get the disease or not. You can find the exact numbers on this somewhere, but the number is pretty low. Your teens may not grasp the real reality of these numbers and focus in on the "what-ifs". Maybe a little example of how low the numbers are actually may help.
I would give them an explanation of what MS in medical terms. Your teens will appreciate this better being talked to like adults. Try to stay as positive as possible. It's easy to turn it negative by mentioning things that they need to be doing for you like cleaning that room that they don't clean or doing this chore or that, etc. They're likely to begin feeling guilty about this, and may even think that you've been fatigued unnecessarily by something they've done. However, you may want to mention that part of the disease does involve fatigue and weakness, and that you may need occasional breaks and rest.
Trying to figure out what medicine to take is also a hard one. Read here on this forum about people's experiences, do research yourself, and make a separate post about DMD's to get other people's input. I guess above all, your neuro is the best place to get information. Ask him about the medicine he thinks is best. My neuro didn't have a preference for one over the other (if he did, he didn't share). He gave me lots of DVDs to watch from all of the different medicines.
Best wishes, and keep us posted!
Deb
Hi Sarah
Well, like everyone else here, I'm sorry. At the same time, I'm so glad you were able to get a quick diagnosis so you can start treatment etc.
I haven't been diagnosed but also haven't been to a real dr in years - other than my recent trip to the ER which was a step in the right direction (thank goodness) - but like you, I know something's wrong and have classic MS symptoms ( some of which have gotten really bad ).
They gave me methylpred. at the ER ( though not as stong,I don't think ) and you're right they are so nasty!!! I try not to let 'em hit my tounge but still get that bitter taste in my mouth!!
So anyway, I just wanted to congratulate you on your dx and wish you the best of luck with it all.
About the kids-I ordered a FREE 2disk DVD set from www.directhealthmedia.org - When I ordered it I thought I'd better go on and request one because it could be 6mos before I get it. Not the case. I got mine in a couple of days! (just yesterday)
The 2nd dvd is titled "Talking With Your Children About MS : A Place to Begin" website is helpful too but the dvd's go into more detail from what I was able to watch so far. So you should order yours today!
Take care,
Stella
Well, like everyone else here, I'm sorry. At the same time, I'm so glad you were able to get a quick diagnosis so you can start treatment etc.
I haven't been diagnosed but also haven't been to a real dr in years - other than my recent trip to the ER which was a step in the right direction (thank goodness) - but like you, I know something's wrong and have classic MS symptoms ( some of which have gotten really bad ).
They gave me methylpred. at the ER ( though not as stong,I don't think ) and you're right they are so nasty!!! I try not to let 'em hit my tounge but still get that bitter taste in my mouth!!
So anyway, I just wanted to congratulate you on your dx and wish you the best of luck with it all.
About the kids-I ordered a FREE 2disk DVD set from www.directhealthmedia.org - When I ordered it I thought I'd better go on and request one because it could be 6mos before I get it. Not the case. I got mine in a couple of days! (just yesterday)
The 2nd dvd is titled "Talking With Your Children About MS : A Place to Begin" website is helpful too but the dvd's go into more detail from what I was able to watch so far. So you should order yours today!
Take care,
Stella
Sorry about your diagnosis. In the future try to break up your writing into paragraphs. I usually just skip big blocks they are hard for many folks with MS to read.
The needles are no big deal you get used to them.
As far as children the MS Society has resources on line and books to help with telling family members. I have no children so I have no experience. The family members I did tell all had to deal with it in their different ways.
It does not matter who you are coming at this diagnosis. It is a roller coaster. There can be relief in knowing what is going on to, this just is not happening, to anger, to guilt, and back and forth.
It is that whole one day at a time thing. You are no different than you were the day before you were diagnosed. Try not to become the label.
Good luck.
Alex
The needles are no big deal you get used to them.
As far as children the MS Society has resources on line and books to help with telling family members. I have no children so I have no experience. The family members I did tell all had to deal with it in their different ways.
It does not matter who you are coming at this diagnosis. It is a roller coaster. There can be relief in knowing what is going on to, this just is not happening, to anger, to guilt, and back and forth.
It is that whole one day at a time thing. You are no different than you were the day before you were diagnosed. Try not to become the label.
Good luck.
Alex
Hi Sarah
I'm sorry that you have been diagnosed with MS but at least you know what you are dealing with.
I take Betaseron, I inject every other day and use an auto injector, I don't have any problems at all with it and it very quickly became routine. I found the flu jabs much more uncomfortable than the beta injections.
My children were already grown up when I was diagnosed. I'm sure there will be others on this forum who can offer advice on telling them. It is never going to be easy but you will get through it.
I wish you luck and a speedy recovery from this relapse.
Mand
I'm sorry that you have been diagnosed with MS but at least you know what you are dealing with.
I take Betaseron, I inject every other day and use an auto injector, I don't have any problems at all with it and it very quickly became routine. I found the flu jabs much more uncomfortable than the beta injections.
My children were already grown up when I was diagnosed. I'm sure there will be others on this forum who can offer advice on telling them. It is never going to be easy but you will get through it.
I wish you luck and a speedy recovery from this relapse.
Mand
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