Aa
Diagnosis,...finally
Final diagnosis, with big certainly it is ms, at the moment non progressive. Hope it will stay that way, Extremely upset at the moment,... the 'verdict' was delivered day before my hubbies birthday. Nice pressie!!!,... AFter a few days I am back at work now, feeling extremely vulnerable and wobbly (mainly mentally). Test for optic neuritis negative, but found some lesions on my brain and couple on my spine. Lower spine absolutely fine. Feel this is like a bad dream and hoping I am going to wake up and get my life back.
I am so so so scared about the future,... ms is like a timabomb, is it not?
Doc does not want to put me on Beta interferons, as she does not think I had 2 acute attacks. I have only had few faily minor symptoms, which lasted anything from few days to couple of weeks. Slight tingling in my legs seems to be there permantnelty, but they can treat this symptom, which is fine.
I have heard about the new vaccine trials,... they have been through the first phase, has anyone heard about this or do you know what the criterias are for getting into a trial? I bet it is pretty hard.
All the best.
Extremely scared...
Janey1
I am so so so scared about the future,... ms is like a timabomb, is it not?
Doc does not want to put me on Beta interferons, as she does not think I had 2 acute attacks. I have only had few faily minor symptoms, which lasted anything from few days to couple of weeks. Slight tingling in my legs seems to be there permantnelty, but they can treat this symptom, which is fine.
I have heard about the new vaccine trials,... they have been through the first phase, has anyone heard about this or do you know what the criterias are for getting into a trial? I bet it is pretty hard.
All the best.
Extremely scared...
Janey1
Thank you very much for your kind words. I am back at work now, trying really hard to get my life back (well, sort of, ...). I should be seeing a consultant within a couple of months who should be able to advise me in the drugs department,... There is one catch however, I would like to have a baby so would like to know what they say first,...
The consultant that dignosed me said my symptoms are not bad enough for go on beta inferons yet,... Quix what do you think about this statement? Would your asnwer be the same as above?
Many thanks and take care
Janey1
The consultant that dignosed me said my symptoms are not bad enough for go on beta inferons yet,... Quix what do you think about this statement? Would your asnwer be the same as above?
Many thanks and take care
Janey1
Everyone beat me to welcoming you. I'm sorry about the diagnosis, but now you have an answer and something to learn about. We'll be here to help with questions, the inevitable down times or anger and wondering if everything is the MS or just normal life!
I am concerned, though, that you have a diagnosis and no plans to put you on Disease Modifying Drugs. The international consensus on the treatment of MS indicates that the proper treatment of this disease includes starting one of the meds as soon as diagnosis is made or is highly suspect! We know that, no matter how many attacks or symptoms there are on the outside, that the white matter of the brain and spinal cord are continuing to develop damage. The meds have been shown to slow the progression of physical disability and to make the relapses/attacks less frequent. They take a couple months to begin working and they can't begin that until you start on them.
Your doctor is behind the times by not recommending that you begin one of these immediately. If you would like I will provide you with some sites which have recommendations that you can print out and take toyour doctor. This is not just our opinion!
The tears and the anger are normal and they come and go. It's not fair at all. But this disease is often not a horror. For the most part, people go about their regular lives, with some times of symptoms and not feeling so well. They have families and work full or part time. When you land on a forum like this you see a skewed group. Many of us are disabled. We have more time to spend on the internet and are more vocal. But several of us have doctors who treat us who also have MS. That says a lot.
It's one of the reasons to start therapy early, to preserve your life in the most normal, functional form you can. T-Lynn, Harrie and several others are on Rebif, Jon and I are on Avonex, Karina and Sherma are on Copaxone. So you have a nice group of people that you can talk to about the meds.
Welcome again, there isn't anything you can't say to us or ask us! Quix
I am concerned, though, that you have a diagnosis and no plans to put you on Disease Modifying Drugs. The international consensus on the treatment of MS indicates that the proper treatment of this disease includes starting one of the meds as soon as diagnosis is made or is highly suspect! We know that, no matter how many attacks or symptoms there are on the outside, that the white matter of the brain and spinal cord are continuing to develop damage. The meds have been shown to slow the progression of physical disability and to make the relapses/attacks less frequent. They take a couple months to begin working and they can't begin that until you start on them.
Your doctor is behind the times by not recommending that you begin one of these immediately. If you would like I will provide you with some sites which have recommendations that you can print out and take toyour doctor. This is not just our opinion!
The tears and the anger are normal and they come and go. It's not fair at all. But this disease is often not a horror. For the most part, people go about their regular lives, with some times of symptoms and not feeling so well. They have families and work full or part time. When you land on a forum like this you see a skewed group. Many of us are disabled. We have more time to spend on the internet and are more vocal. But several of us have doctors who treat us who also have MS. That says a lot.
It's one of the reasons to start therapy early, to preserve your life in the most normal, functional form you can. T-Lynn, Harrie and several others are on Rebif, Jon and I are on Avonex, Karina and Sherma are on Copaxone. So you have a nice group of people that you can talk to about the meds.
Welcome again, there isn't anything you can't say to us or ask us! Quix
I must say I had tears in my eyes when I read your message. Sounds you have been through a hell of a lot. Thank you.
Thank you and the others for your motivating and kind words.
Currently I am def not dealing with all my fears very well and I am still quite tearful. But I am determined to try harder, just need a bit of time to adjust.
Take care for now
Janey1
Thank you and the others for your motivating and kind words.
Currently I am def not dealing with all my fears very well and I am still quite tearful. But I am determined to try harder, just need a bit of time to adjust.
Take care for now
Janey1
Hi, Janey~
I'm so sorry feeling the way you are. In this forum, we're always searching for that all important diagnosis; the one we don't really want at all.
Everyone is right that you still need to take the lead here, and if your doc is not up to speed on the latest treatment as Jon has said, make sure you ask her about it, or inform her. There is nothing wrong with asking questions of your doctor about why she wants to wait to treat you. Jon and the others who are MSers know much more about it than I, so perhaps they could advise you better about what is protocol.
Good luck and feel well. I know it's a difficult time. I'm glad you finally have an answer and can move forward.
Peace,
Zilla*
I'm so sorry feeling the way you are. In this forum, we're always searching for that all important diagnosis; the one we don't really want at all.
Everyone is right that you still need to take the lead here, and if your doc is not up to speed on the latest treatment as Jon has said, make sure you ask her about it, or inform her. There is nothing wrong with asking questions of your doctor about why she wants to wait to treat you. Jon and the others who are MSers know much more about it than I, so perhaps they could advise you better about what is protocol.
Good luck and feel well. I know it's a difficult time. I'm glad you finally have an answer and can move forward.
Peace,
Zilla*
I was origanally told in 1998 after a failed back surgery that I had MS.I didn't walk for 2 years unaided.I honestly thought the surgeon was covering his rear.I was young with little ones at home.I disregarded the DX.
I started having symptoms in 2004 and because of my age neuro's was disregarding the MRI's and test results.Finally found a good neuro who Dx'd me in Dec.2006.2 of my Drs said all long MS.
The leg braces don't bother me,yes my legs hurt,I have chronic spasticity(muscle spasms) and the leg braces keep the legs straight and the tendons from shortening.
Heck I climb ladders with them,I ride a bike(not a pretty site) and I belong to a fitness center,go monday through friday.The nerves from the brain to the legs do not work well together,I have bilateral drop foot.The leg braces have been a god sent.The right one is full length,the other is just below the knee.
Please keep in mind stress will be your worst enemy,even being healthy ,disease free we could if this and if that.
I had 2 ways at looking at this disease,either I could let it consume me or me be me and resume my life,yes,I have limitations.heck I still drive and all.
The rebif is a disease modifying med to slow the progression down.There's avonex an intermuscular shot once a week,rebif a shot 3 times a week under the skin,copaxone daily under the skin and one more that I can't think of,brain fog.
Hang in there and educate yourself,knowledge is power.
I started having symptoms in 2004 and because of my age neuro's was disregarding the MRI's and test results.Finally found a good neuro who Dx'd me in Dec.2006.2 of my Drs said all long MS.
The leg braces don't bother me,yes my legs hurt,I have chronic spasticity(muscle spasms) and the leg braces keep the legs straight and the tendons from shortening.
Heck I climb ladders with them,I ride a bike(not a pretty site) and I belong to a fitness center,go monday through friday.The nerves from the brain to the legs do not work well together,I have bilateral drop foot.The leg braces have been a god sent.The right one is full length,the other is just below the knee.
Please keep in mind stress will be your worst enemy,even being healthy ,disease free we could if this and if that.
I had 2 ways at looking at this disease,either I could let it consume me or me be me and resume my life,yes,I have limitations.heck I still drive and all.
The rebif is a disease modifying med to slow the progression down.There's avonex an intermuscular shot once a week,rebif a shot 3 times a week under the skin,copaxone daily under the skin and one more that I can't think of,brain fog.
Hang in there and educate yourself,knowledge is power.
If you have being DXd with definite MS then you should be on an interferon or other DMD. That is the accepted norm in use today. Do not wait to start a DMD. You do not need a 2nd exacerbation. I think your Nuero may not be as up on the criteria as she should. I would take her to task on this, as it not the accepted practice.
Jon
Jon
All the power to to I know what your going though, fear, confusion, doubt, I was diagnoised 3 years ago but the thought then was not to treat untill attacks get worse. As we see the theory has changed. I am a fire fighter and the last couple of days have been very hard. I am waiting to be seen by my MS clinic due to the fear that this thing inside me is ramping up.
You are not alone remember that.
The anti viral is called BHT-3009. Developed here in Canada at the Univertisty of Montreal. They are in a trial of about 250 people.
You are not alone remember that.
The anti viral is called BHT-3009. Developed here in Canada at the Univertisty of Montreal. They are in a trial of about 250 people.
Hugs Janey! I've not had a chance to go back and read through many of the posts, but how long have you been on the quest for an dx?
While MS is probably not what you wanted to hear, now you can focus on living and not being in limbo-land. You can focus on the best treatment for your situation.
((HUGS)))
Thanks for replying to my posts.
While MS is probably not what you wanted to hear, now you can focus on living and not being in limbo-land. You can focus on the best treatment for your situation.
((HUGS)))
Thanks for replying to my posts.
Thank you harrie. I will def ask about the meds,... do you have to inject yourself? How often?
I work as an accountant and also hope to continue. Yes you are right, the diagnosis could always be worse,... there is so much of it out there.
I am hoping to have a baby, depending on what the consultant says and perhaps if they were happy with it start with meds afterwards. I will be seeing a concultant to advise me on the meds, so will see.
After talking to people here I am very slowly starting to see some light at the end of the tunnell,... perhaps things might start looking up at some point soon,...
Thank you
Janey1
I work as an accountant and also hope to continue. Yes you are right, the diagnosis could always be worse,... there is so much of it out there.
I am hoping to have a baby, depending on what the consultant says and perhaps if they were happy with it start with meds afterwards. I will be seeing a concultant to advise me on the meds, so will see.
After talking to people here I am very slowly starting to see some light at the end of the tunnell,... perhaps things might start looking up at some point soon,...
Thank you
Janey1
hi janey
i am on interferon-rebif, started one mth ago, was diagnosed 2mths ago, pestered them into putting me on this medication as i heard it was very effective to people newly diagnosed to prevent them moving on, that is if they will even move on, depends on each persons scans, i work as a legal secetary and hope to continue on. i really believe if you keep the grieving process to no more than a few weeks, then say to yourself, ok ihave ms?, but what else worse could i have?, You dont realise hw many worse things we could have, i believe once you are hopeful it is half the battle.
the only reason i was so adamant to start med, was cause i was looking at my dad, in your case maybe your not so keen to start on anything, but hopefully you will consider it soon.
harrie
i am on interferon-rebif, started one mth ago, was diagnosed 2mths ago, pestered them into putting me on this medication as i heard it was very effective to people newly diagnosed to prevent them moving on, that is if they will even move on, depends on each persons scans, i work as a legal secetary and hope to continue on. i really believe if you keep the grieving process to no more than a few weeks, then say to yourself, ok ihave ms?, but what else worse could i have?, You dont realise hw many worse things we could have, i believe once you are hopeful it is half the battle.
the only reason i was so adamant to start med, was cause i was looking at my dad, in your case maybe your not so keen to start on anything, but hopefully you will consider it soon.
harrie
Hello,
Thank you for your kind message,... I have not heard about the drug Rebif before, but have noted it down now to ask about it in the next visit to the consultant.
How long have you had ms? Is it that bad that you have to wear braces? Is it uncomfortable? Could you not exercise to strenthen your muscles? How long did it take to get dx?
Sorry about so many questions, I am just really interested and a bit curious too.
Yes you are right about the frequency of attacks, my consultant treats someone who has not had an attack in 18 years!!! Sounds encouraging to me. At the moment the thing I can not get used to and find utterly petrifying (and is causing me to cry a lot) is the unknown factor. No one knows what is going to and what will happen.
Look after yorself
Janey1
Thank you for your kind message,... I have not heard about the drug Rebif before, but have noted it down now to ask about it in the next visit to the consultant.
How long have you had ms? Is it that bad that you have to wear braces? Is it uncomfortable? Could you not exercise to strenthen your muscles? How long did it take to get dx?
Sorry about so many questions, I am just really interested and a bit curious too.
Yes you are right about the frequency of attacks, my consultant treats someone who has not had an attack in 18 years!!! Sounds encouraging to me. At the moment the thing I can not get used to and find utterly petrifying (and is causing me to cry a lot) is the unknown factor. No one knows what is going to and what will happen.
Look after yorself
Janey1
Take one day at a time,except the good days graciously and sleep through the bad.
I was Dx'd before I turned 41.Nice B-day gift.
I started Rebif 2 weeks later.
The sooner the disease modifying meds the better,it won't cure it,but hopefully slow it down.
With MS its about finding a happy medium,conserving energy and so forth.Its a learning process.
Its quite normal to greive after a Dx,its normal to get angry,depressed and then exceptance.
You tell the ones you need to,others its none of there business.I wear leg braces to walk,so I get alot of stupid questions.But they make a great cell phone carrier,just clip that bad boy on and hey I remember where its at.
Keeping a positive attitude helps.You may not have an attack or relapse for 10 years.
I was Dx'd before I turned 41.Nice B-day gift.
I started Rebif 2 weeks later.
The sooner the disease modifying meds the better,it won't cure it,but hopefully slow it down.
With MS its about finding a happy medium,conserving energy and so forth.Its a learning process.
Its quite normal to greive after a Dx,its normal to get angry,depressed and then exceptance.
You tell the ones you need to,others its none of there business.I wear leg braces to walk,so I get alot of stupid questions.But they make a great cell phone carrier,just clip that bad boy on and hey I remember where its at.
Keeping a positive attitude helps.You may not have an attack or relapse for 10 years.
Your words are very encouraging at this time, when I sooooo need encouragement. I am quite impressed with our nhs, they have been so quick to do all the tests and diagnose me. I have seen our occupational nurse today, it did help a lot, but I think at the moment I just need to go through some sort of grieving and accepting process myself. I do not know how long this will last but hope not too long.
I think I am quite lucky and not suffering from severe symptoms and the consultant said it is not progressive (that was birthday pressie for my hubbie I guess).
Can you tell me more about yourself? It sounds like you are working? Are you on any medications at the moment?
I too have chosen to tell only my family and those closest at work as also want to avoid those questions about how I am doing.
I am really sorry about your dad. I did not think these things run in families. I thought this was some sort of viral attack on the body, or something like that,... mind you my grandma died of diabetes, which also is an autoimune condition.
Look forward to hearing from you.
Janey1
I think I am quite lucky and not suffering from severe symptoms and the consultant said it is not progressive (that was birthday pressie for my hubbie I guess).
Can you tell me more about yourself? It sounds like you are working? Are you on any medications at the moment?
I too have chosen to tell only my family and those closest at work as also want to avoid those questions about how I am doing.
I am really sorry about your dad. I did not think these things run in families. I thought this was some sort of viral attack on the body, or something like that,... mind you my grandma died of diabetes, which also is an autoimune condition.
Look forward to hearing from you.
Janey1
hi janey,
i am in exactly the same boat as you, know exactly how you feel, im in my 20's. my dad is in a wheechair with ms, he is 60 and had no medication for 10years cause there was none.
when they told me ms i felt like i had been knocked down, as time went on it gets easier, my symtom was foot drop and i was dragging my leg behind me for a few days, went to hospital,had a brain and spine mri, 3 of them. lessions showed up on my brain and due to my family history i was diagnosed.i was put on steroids for 2weeks which cleared things up.
ms dosnt scare me, the only thing that will scare me is if i follow the same footsteps as my da.
i demaned to go on rebif, interferon as i did not want anymore symtoms to arise. this is not a cure, but helps to prevent attacks. my way of dealing with this is by not telling anybody except my family, as i really dont want to talk abt it to friends or work collegues, this has helped me. if id of told people they would continully ask me how i am, when i realy dont want to b thinking about it all the time.
i would really advise you to start on some medication as you really dont want this to return or do your best to prevent it. maybe because ms is in my family i have higher risk of attacks, im not sure about this. trust me as time goes on it gets easier and you will get used to the idea, sometimes looking up ms on the web can give a very negative approch abt it, be wary of this. this forum has helped me a lot.
you wil be fine, let me know how your getting on
harrie
i am in exactly the same boat as you, know exactly how you feel, im in my 20's. my dad is in a wheechair with ms, he is 60 and had no medication for 10years cause there was none.
when they told me ms i felt like i had been knocked down, as time went on it gets easier, my symtom was foot drop and i was dragging my leg behind me for a few days, went to hospital,had a brain and spine mri, 3 of them. lessions showed up on my brain and due to my family history i was diagnosed.i was put on steroids for 2weeks which cleared things up.
ms dosnt scare me, the only thing that will scare me is if i follow the same footsteps as my da.
i demaned to go on rebif, interferon as i did not want anymore symtoms to arise. this is not a cure, but helps to prevent attacks. my way of dealing with this is by not telling anybody except my family, as i really dont want to talk abt it to friends or work collegues, this has helped me. if id of told people they would continully ask me how i am, when i realy dont want to b thinking about it all the time.
i would really advise you to start on some medication as you really dont want this to return or do your best to prevent it. maybe because ms is in my family i have higher risk of attacks, im not sure about this. trust me as time goes on it gets easier and you will get used to the idea, sometimes looking up ms on the web can give a very negative approch abt it, be wary of this. this forum has helped me a lot.
you wil be fine, let me know how your getting on
harrie
Thank you for your kind words. Yes, there is truth in the words that knowledge is power. Sometimes I however feel that I am so scared of this condition that the less I know the better.
Deep breath, pace and right balance.
Thank you
All the best.
Deep breath, pace and right balance.
Thank you
All the best.
Hi Janey
Many healing hugs to you.
I second what SL said. Try to stay in the middle and maintain balance. That is great advice to eliminate stressors. I am not 'completely' diagnosed yet.. one doctor says yes, one does not.
But I became a type 1 diabetic when in my thirties.. talk about having the rug pulled out from underneath you. So I sure understand all the emotions of traumatic and chronic diagnosis'.
I read that about the vaccine trials also.. that looks really promising for us with auto-immune disease! I hope someone else knows something about it.
Take care
Jazzy
Many healing hugs to you.
I second what SL said. Try to stay in the middle and maintain balance. That is great advice to eliminate stressors. I am not 'completely' diagnosed yet.. one doctor says yes, one does not.
But I became a type 1 diabetic when in my thirties.. talk about having the rug pulled out from underneath you. So I sure understand all the emotions of traumatic and chronic diagnosis'.
I read that about the vaccine trials also.. that looks really promising for us with auto-immune disease! I hope someone else knows something about it.
Take care
Jazzy
Hi Janey1,
Take deep breaths here. . .hang in there. Knowledge is the 1st step. It's going to be hard to deal w/the wobbly mental and physical status, but find that fine line. What got me through was not getting excited either way. Not getting geared up for the good, and trying to not get down in the dumps. Steer clear of anyone, or anything, who works you up through conversation, situations, etc., and just somehow work toward maintaining balance. Think of it more of a long distance. . . your not going to be able to shoot toward that finish line. . .it's all about the pace - just pace, just breath, just get some rest when you can, mind and body...
Be well,
SL
Take deep breaths here. . .hang in there. Knowledge is the 1st step. It's going to be hard to deal w/the wobbly mental and physical status, but find that fine line. What got me through was not getting excited either way. Not getting geared up for the good, and trying to not get down in the dumps. Steer clear of anyone, or anything, who works you up through conversation, situations, etc., and just somehow work toward maintaining balance. Think of it more of a long distance. . . your not going to be able to shoot toward that finish line. . .it's all about the pace - just pace, just breath, just get some rest when you can, mind and body...
Be well,
SL
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