Aa
What happens when you finally get the diagonsis?
What happens when you finally get the diagonsis? Do you have to start medication? Do they put you on vitamins? Physical theropy, Nutrician?
Rae
Rae
Havent been handed one, doctor just said you have a very slow benign form of MS, we need to check you every 6 months to make sure it is staying benign. I guess I was just hoping he were wrong and that maybe it is just the vitamin problem.
It could be a whole host of things. But I thought you said you had been given a DX of benign MS?
I am thinking they are going to say all tests came back normal but, Vitamin D Deficency. Could it be just that?
The problem with a benign MS dx is that there is no way to know when, or if, the disease will progress. This is from the National MS Society.
"The National MS Society’s National Clinical Advisory Board recommends that treatment with an immunomodulating drug (such as FDA-approved interferons or glatiramer acetate) be considered as soon as possible following a definite diagnosis of MS with active disease (i.e., recent relapses and/or new lesions on MRI), and may also be considered for patients with a first attack who are at high risk of developing MS (known as clinically isolated syndrome). Because at the time of diagnosis and for some years thereafter it is impossible to know if disease will be benign or more active, this recommendation holds for people who present with a mild disease course. "
"The National MS Society’s National Clinical Advisory Board recommends that treatment with an immunomodulating drug (such as FDA-approved interferons or glatiramer acetate) be considered as soon as possible following a definite diagnosis of MS with active disease (i.e., recent relapses and/or new lesions on MRI), and may also be considered for patients with a first attack who are at high risk of developing MS (known as clinically isolated syndrome). Because at the time of diagnosis and for some years thereafter it is impossible to know if disease will be benign or more active, this recommendation holds for people who present with a mild disease course. "
COMMUNITY LEADER
OMG he said what?! RUN RUN RUN seriously find a neuro that specialises in MS, this one needs roasting, fridays reserved for neuro roasting, hmmm maybe your neuro needs to be included in the Myths or Lies from neuro's threads too :-0
The 20% was pulled from somewhere other than his brain, CIS has a similar stat for conversion to MS but as irritating as the Benign MS dx is, it is still a dx of MS! Commonly people get this dx because their sx are not in your face needing to be treated or their insurance wont cover DMD's.
You still need to meet the Mcdonald criteria to get the dx of Benign MS, Probable MS is usually given when not quite meeting the criteria for dx but they are highly likely MS. If your dx with MS the treatment is DMD's the only option available try to slow down the disease. If your sx have worsened and you've added new ones then you have relapsed, theres your proof of progression, not 'Benign MS' but Relapsing Remitting MS.
Again the treatment plan should be the disease modifying drugs (DMD's)!
I'm really really sorry, but I think your follow up appt is going to be about you having RRMS and starting DMD's, if its not please please get a second opinion, its in your best interest.
HUGS...........JJ
The 20% was pulled from somewhere other than his brain, CIS has a similar stat for conversion to MS but as irritating as the Benign MS dx is, it is still a dx of MS! Commonly people get this dx because their sx are not in your face needing to be treated or their insurance wont cover DMD's.
You still need to meet the Mcdonald criteria to get the dx of Benign MS, Probable MS is usually given when not quite meeting the criteria for dx but they are highly likely MS. If your dx with MS the treatment is DMD's the only option available try to slow down the disease. If your sx have worsened and you've added new ones then you have relapsed, theres your proof of progression, not 'Benign MS' but Relapsing Remitting MS.
Again the treatment plan should be the disease modifying drugs (DMD's)!
I'm really really sorry, but I think your follow up appt is going to be about you having RRMS and starting DMD's, if its not please please get a second opinion, its in your best interest.
HUGS...........JJ
Oh, I was told I have a Benign form of MS. I was under the empression that I have a 20% chance of getting full MS. So, I thought I was not dx yet.
I posted this because my neuro didn't feel that my symptoms were bad enough to be put on medication. I was worried with the new symptoms being worsening and my vit D showing deficent and who knows what the new MRI will show, that the dx was going to change.
Just didn't want to be blind sided at follow-up.
I posted this because my neuro didn't feel that my symptoms were bad enough to be put on medication. I was worried with the new symptoms being worsening and my vit D showing deficent and who knows what the new MRI will show, that the dx was going to change.
Just didn't want to be blind sided at follow-up.
COMMUNITY LEADER
Hi Rae,
Sorry I'm slightly confused (lol it could be just me) I thought you'd said in your other posts that you are dx with Benign MS which is a diagnosis of MS, "doctors maybe found something and my Benign MS is going to be chaning to MS" but if your not diagnosed which is what i'm reading from this post, then i'm sure you'll understand why the confusion.
So to clear up any confusion, this may help.
* If a neurologist has documented you have 'Benign MS' then you have a dx of MS, a controversial dx but it is still a dx of MS. The same basically applies for Clinical Isolated Syndrome (CIS) though the controversy is in regard to treatments not the dx. CIS is diagnosed by a neurologist, connected to MS but not exactly a dx of MS, but CIS is a medical dx.
* If you are undx (affectionalty named a limbo lander) and use the terms 'Benign MS' or 'Probable MS' then dx people with MS and other limbo landers will think you have been diagnosed with MS.
[sorry i started this 5 hours ago and forgot to finish it lol]
I wouldn't be concerned about what happens after dx until you get the dx of MS, treatment plans differ depending what an individual needs, just take one step at a time. :-)
Cheers..........JJ
Sorry I'm slightly confused (lol it could be just me) I thought you'd said in your other posts that you are dx with Benign MS which is a diagnosis of MS, "doctors maybe found something and my Benign MS is going to be chaning to MS" but if your not diagnosed which is what i'm reading from this post, then i'm sure you'll understand why the confusion.
So to clear up any confusion, this may help.
* If a neurologist has documented you have 'Benign MS' then you have a dx of MS, a controversial dx but it is still a dx of MS. The same basically applies for Clinical Isolated Syndrome (CIS) though the controversy is in regard to treatments not the dx. CIS is diagnosed by a neurologist, connected to MS but not exactly a dx of MS, but CIS is a medical dx.
* If you are undx (affectionalty named a limbo lander) and use the terms 'Benign MS' or 'Probable MS' then dx people with MS and other limbo landers will think you have been diagnosed with MS.
[sorry i started this 5 hours ago and forgot to finish it lol]
I wouldn't be concerned about what happens after dx until you get the dx of MS, treatment plans differ depending what an individual needs, just take one step at a time. :-)
Cheers..........JJ
I can relate to the husband. Mine was scared to death when I was being diagnosed. He just wanted it to go away. Pretend it is not there.
If it is MS each case is different so the treatment is different. You may be put on a Drug to slow progression. If you are having symptoms they may be help with some of those issues.
You go through a whole emotional thing to get your head around it which may take months for some years.
Then you realize you have to live in today.
I reached out to my local chapter of the National MS Society who have been a life line and wealth of support. I needed more help so I got a counselor. I started thinking about exercising and tried a bunch of things until something stuck.
What is my life like now. I am back at work, I am an artist. I train my own Service Dogs. I put an ad on a local classified and started Dressage Horse back riding. I see a Neurologist once a year, a MS Specialist. I was wasting money going twice a year.
I go to a good pain clinic since pain is my only thing that can be addressed at this point. I have learned to pace myself. I can't do all I used to but I concentrate on what I can do.
Yes it is scary. it is a roller coaster. I am the same exact person I was before someone told me I had MS. This helps me.
Alex
If it is MS each case is different so the treatment is different. You may be put on a Drug to slow progression. If you are having symptoms they may be help with some of those issues.
You go through a whole emotional thing to get your head around it which may take months for some years.
Then you realize you have to live in today.
I reached out to my local chapter of the National MS Society who have been a life line and wealth of support. I needed more help so I got a counselor. I started thinking about exercising and tried a bunch of things until something stuck.
What is my life like now. I am back at work, I am an artist. I train my own Service Dogs. I put an ad on a local classified and started Dressage Horse back riding. I see a Neurologist once a year, a MS Specialist. I was wasting money going twice a year.
I go to a good pain clinic since pain is my only thing that can be addressed at this point. I have learned to pace myself. I can't do all I used to but I concentrate on what I can do.
Yes it is scary. it is a roller coaster. I am the same exact person I was before someone told me I had MS. This helps me.
Alex
Rae -
What you do after diagnosis is really your choice... I had about 5 months between when MS was first put on the table and when diagnosis was confirmed. During that time, I did a ton of reading, got involved with the online groups... and in that time, I decided to take the bull by the horn and try going with diet and supplements to see if an all natural approach worked for me. I saw symptoms continue to be a problem, so knew that I would not be one of the lucky ones who could go the natural method... and honestly at 42 and was just married, I didn't have a much of an outlook to take the gamble of not starting one of the MS meds. But, I had the time to do reading on all options and pretty much knew before the bomb dropped that if things did come up as MS, what path I would take.
While I am on copaxone now, I also am still using supplements to help with symptom management for what problems I have today... the copaxone will hopefully help down the road, but for today I am still trying all natural and have come up with a regimen that has helped me quite a bit (not recommending it for anyone else, works for me, but may not work for another).
A good opened mind neuro may put everything you listed on the table... My neuro told me to get a Wii with the Fit Plus game, she heads up an MS clinic and she has been seeing excellent results... especially in patients like me that openly admit I won't go to PT for long!
Keep a positive mindset, read all you can find... nothing will help you to deal then educating yourself... I hope they come up with something other then MS, but if that is the end result, know there are options and a ton of people here that are supportive and wonderful!
I'm still a newbie myself... and I have loved all the support and even laughs shared with people on this site and even online MS support chats...
by the way welcome to the site... sorry you're here, but happy you found everyrone, no one else will understand like some of the sweethearts that come in here :)
Hugs,
Jen
Not dx yet. 39 year old female, living in Upstate New York. Had an EEG done and neuro was asked into the room. They didn't tell me anything. MRI is Wednesday. Blood work came back Vitamin D deficent. All other blood tests came back normal. Dr. perscribed Vit D 3000IU a day.
I had my first attack and optical neurosis in 2005. In the hospital for a week. Loss feeling in my left leg and left arm,Had every test under the sun done. LP good MRI 1 lesion. Treated me with steriods for 24 hours. Was better.
Had problems here and there numbness and tingling, weakness on left leg and arm. Fatigue, Fatigue, fatigue. Double vision on peripherial vision here and there. Always felt the best in summer, except heat toerance.
Tested every six month everything normal. Now, balance problems and mental cognitvie problems. wekness in left side. Feeling of hot water pouring down left side.
Just wondering how prepared I should be for my appointment this time. Wasn't sure if I had to choose that day a treatment.
I have wanted to finally find out I have wrong with me for seven years now. But, now I am scared to hear it. My husband thinks I am worring over nothing. He doesn't think I have MS. He thinks its age.I am only 39.
Rae
I had my first attack and optical neurosis in 2005. In the hospital for a week. Loss feeling in my left leg and left arm,Had every test under the sun done. LP good MRI 1 lesion. Treated me with steriods for 24 hours. Was better.
Had problems here and there numbness and tingling, weakness on left leg and arm. Fatigue, Fatigue, fatigue. Double vision on peripherial vision here and there. Always felt the best in summer, except heat toerance.
Tested every six month everything normal. Now, balance problems and mental cognitvie problems. wekness in left side. Feeling of hot water pouring down left side.
Just wondering how prepared I should be for my appointment this time. Wasn't sure if I had to choose that day a treatment.
I have wanted to finally find out I have wrong with me for seven years now. But, now I am scared to hear it. My husband thinks I am worring over nothing. He doesn't think I have MS. He thinks its age.I am only 39.
Rae
Hi, nice to meet you. I've been MIA and I believe you are new to the forum, so we can catch up together.
When you get your diagnosis, a good neuro or MS Center, should give you literature about the disease, maybe hook you up with National Multiple Sclerosis Society who have a wealth of information and ways to help you find your way through this maze.
Are you diagnosed yet?
A lot of the care will remain the same . Symptom relief and new resources for yo to research and decide what options are available to you.
Once diagnosed,comes the roller coaster of emotions. Happy that you have a diagnosis then so sad and overwhelmed at what you've been told.
Just take it one day at at a time. You are always welcome to ask or vent on the forum as to weather the treatment seems right, etc. You and your neuro should make the final treatment plan together and be available for questions along the way.
Then you continue with your life as you did prior to the dx and try to look at exacerbations as bumps in the road. Remember, MS is not considered a disease that will hasten your death...it's just aggravating ;~)
Looking forward to getting to know you better,
Ren
When you get your diagnosis, a good neuro or MS Center, should give you literature about the disease, maybe hook you up with National Multiple Sclerosis Society who have a wealth of information and ways to help you find your way through this maze.
Are you diagnosed yet?
A lot of the care will remain the same . Symptom relief and new resources for yo to research and decide what options are available to you.
Once diagnosed,comes the roller coaster of emotions. Happy that you have a diagnosis then so sad and overwhelmed at what you've been told.
Just take it one day at at a time. You are always welcome to ask or vent on the forum as to weather the treatment seems right, etc. You and your neuro should make the final treatment plan together and be available for questions along the way.
Then you continue with your life as you did prior to the dx and try to look at exacerbations as bumps in the road. Remember, MS is not considered a disease that will hasten your death...it's just aggravating ;~)
Looking forward to getting to know you better,
Ren
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