Aa
just diagnosed
just been diagnosed ppms--7 unique bands--protien 58--3mris progressing
I'm late in chiming in. I can't seem to stay caught of here, but I want to welcome you to our family. You have received a tough diagnosis - BY MAIL?? Seriously, is that how you found out? PPMS is not always a steadily progressive downhill course. My neuro says he has many PPMSers in their 60's and 70's and many are doing quite well. And the newest poster, BioWham, says her grandmother has had PPMS, she's 89 and whizzes around in her wheelchair.
About the need for an LP. That is something that varies among different neurologists. In the "old days" before MRI got as good as it is, the LP was an important, even critical part of the diagnosis. But, now many people can get a firm diagnosis without having an LP done. If the evidence on the person's history and physical and MRI is weak, an LP can provide good supporting evidence. Some neurologists feel that a negative LP rules out MS, but in my reading that is simply not true.
They look in the spinal fluid for any signs of an infections which could mimic MS. Then they also look for the production of large amounts of antibodies. Antibody production signals that an immune, inflammatory response is taking place within the Central Nervous system, the brain and/or spinal cord. This is seen in MS, in a few infections, and only in a few other neurological diseases. These tests are called the IgG Index (IgG is a class of antibody), the total protein, and oligoclonal bands.
I totally agree with you that the FATIGUE and the mental mush is by far the worst of the disease. I used to be a practicing physician, but I couldn't begin to do an hour of the 14-hour days I used to put in. For the fatigue I take a medication called Provigil. It is probably the best of all the anti-fatigue meds used in MS. It also gives me more metal clarity. You might ask your doctor about it. Someone just today was saying how much it has helped with her fatigue and her cognitive "brain fog."
We are here to answer your every wonder, listen to all of the venting or ranting - or even your raving - becasue someone here has been through whatever it is that you are going through at the time. I also began with severe right leg weakness and spasticity, dizziness, incontinence and "failure to think." I try to think of something and there's nothing there - just a big black void. It's hard when you remember being quick and smart and witty.
So, I hope you stay and allow us to help you through this.
Quix
About the need for an LP. That is something that varies among different neurologists. In the "old days" before MRI got as good as it is, the LP was an important, even critical part of the diagnosis. But, now many people can get a firm diagnosis without having an LP done. If the evidence on the person's history and physical and MRI is weak, an LP can provide good supporting evidence. Some neurologists feel that a negative LP rules out MS, but in my reading that is simply not true.
They look in the spinal fluid for any signs of an infections which could mimic MS. Then they also look for the production of large amounts of antibodies. Antibody production signals that an immune, inflammatory response is taking place within the Central Nervous system, the brain and/or spinal cord. This is seen in MS, in a few infections, and only in a few other neurological diseases. These tests are called the IgG Index (IgG is a class of antibody), the total protein, and oligoclonal bands.
I totally agree with you that the FATIGUE and the mental mush is by far the worst of the disease. I used to be a practicing physician, but I couldn't begin to do an hour of the 14-hour days I used to put in. For the fatigue I take a medication called Provigil. It is probably the best of all the anti-fatigue meds used in MS. It also gives me more metal clarity. You might ask your doctor about it. Someone just today was saying how much it has helped with her fatigue and her cognitive "brain fog."
We are here to answer your every wonder, listen to all of the venting or ranting - or even your raving - becasue someone here has been through whatever it is that you are going through at the time. I also began with severe right leg weakness and spasticity, dizziness, incontinence and "failure to think." I try to think of something and there's nothing there - just a big black void. It's hard when you remember being quick and smart and witty.
So, I hope you stay and allow us to help you through this.
Quix
Wecome to the forum. I am so sorry to hear of your diagnosis. I know that you must be very scared and freaked out right now. There are so many wonderful people here just waiting to help you through this. Please do find out as much as you can about MS and also if you can get in to see a specialist, please do. It will help you out a lot.
When you feel up to it, please post about how you were diagnosed, and tell us about who you are as a person, not just as an MS patient. That's important that you don't define yourself by your health. Hang in there and things will get better!
When you feel up to it, please post about how you were diagnosed, and tell us about who you are as a person, not just as an MS patient. That's important that you don't define yourself by your health. Hang in there and things will get better!
Hi Tater (love saying/typing that btw, reminds me of Ron White the comedian),
Welcome to the forum. I wanted to bump this up for you, so others may possibly chime in. Some here on our forum have done research in this area, and may be able to provide you with some additional information.
It's okay to be afraid. I would be too. If it were me, I would seek a 2nd opinion on the Treatment options given to you with the PPMS dx. Like the others, I'll be here to support, and will try to dig up some more specific information for you. If you are having major cognitive issues, I'm sure it's all you can do to make sense of all this we are giving you.
In the meantime, hang in there the best you can, use any type of coping mechanisms you can to get by until you can do more, and know that there is usually someone here at any given time, to help.
In this group, you'll find that when some have to stand down for a little while, the others will stand proud and hold up the ship. . .
Be well,
SL
Welcome to the forum. I wanted to bump this up for you, so others may possibly chime in. Some here on our forum have done research in this area, and may be able to provide you with some additional information.
It's okay to be afraid. I would be too. If it were me, I would seek a 2nd opinion on the Treatment options given to you with the PPMS dx. Like the others, I'll be here to support, and will try to dig up some more specific information for you. If you are having major cognitive issues, I'm sure it's all you can do to make sense of all this we are giving you.
In the meantime, hang in there the best you can, use any type of coping mechanisms you can to get by until you can do more, and know that there is usually someone here at any given time, to help.
In this group, you'll find that when some have to stand down for a little while, the others will stand proud and hold up the ship. . .
Be well,
SL
Sorry, I gave you the wrong thing to put in google for the Texas MS center. It is" University of Texas Southwestern MS Center".
Craig
Craig
Hi. So sorry to hear of your diagnosis. There is a very good MS center in Texas that treats mostly PPMS patients. There is a neurologist there with the last name of Frohan that tries new treatment methods for PPMS.
The bad news is that they have a waiting list of 600 patients to get an appointment. But they are going to have a new drug study in March 2008 so you can call them, have them put you on the waiting list, and see what happens. You can find them on google by typing in "University of Texas MS Center Dallas" and it will come up.
There is also a center that treats PPMS in Buffalo New York called Jacobs Neurological Institute. they also specialize in PPMS and work with the Dallas center on treatment methods.
Both of these centers do treat PPMS. So if you can afford it I would call and put your name in Dallas. And the Jacobs center can schedule you for an appointment in about a month. But you might want to schedule one in the Spring because Buffalo NY gets snowed in very frequently in the winter.
Are you able to work? Do you have difficulty walking and alot of spasms?
Good Luck.
Craig
The bad news is that they have a waiting list of 600 patients to get an appointment. But they are going to have a new drug study in March 2008 so you can call them, have them put you on the waiting list, and see what happens. You can find them on google by typing in "University of Texas MS Center Dallas" and it will come up.
There is also a center that treats PPMS in Buffalo New York called Jacobs Neurological Institute. they also specialize in PPMS and work with the Dallas center on treatment methods.
Both of these centers do treat PPMS. So if you can afford it I would call and put your name in Dallas. And the Jacobs center can schedule you for an appointment in about a month. But you might want to schedule one in the Spring because Buffalo NY gets snowed in very frequently in the winter.
Are you able to work? Do you have difficulty walking and alot of spasms?
Good Luck.
Craig
I would learn as much about MS and it's symptoms as you can. I recommend going to google and typing in the Multiple Sclerosis Society. This is one website that puts things in laymen's terms so you can understand them This is also a site that doesn't scare the dickens out of you, by telling you all the awful things MS can do. Yeah MS is serious, but it's not a death sentence.
Please read up on what you can. We will soon have a link on this forum where you can click on it to find valuable information, without having to go to other sites to look things up. Another member Quix is putting all the important info together that has been gathered by the forum, over the past several months and we have talked MedHelp into putting it all within reach of your fingertips.
You will never be alone as long as you come to this forym Tater. I promise you that not one step you take, will be alone. We will always be with you, cheering you on and giving you all the emotional support a person could ask for.
You have come to the right place. We will always give you hope and encourage you...no matter what you have to go through. That's a promise we make to you. Again, as others have said, welcome to the greatest forum about MS on the Internet. Where Angels reside that have Invisible Wings....that's what I call all the forum members. They are truly my angels...
Lean on us, Tater...you'll never regret it.
Big ((((HUGS)))))
Heather
Please read up on what you can. We will soon have a link on this forum where you can click on it to find valuable information, without having to go to other sites to look things up. Another member Quix is putting all the important info together that has been gathered by the forum, over the past several months and we have talked MedHelp into putting it all within reach of your fingertips.
You will never be alone as long as you come to this forym Tater. I promise you that not one step you take, will be alone. We will always be with you, cheering you on and giving you all the emotional support a person could ask for.
You have come to the right place. We will always give you hope and encourage you...no matter what you have to go through. That's a promise we make to you. Again, as others have said, welcome to the greatest forum about MS on the Internet. Where Angels reside that have Invisible Wings....that's what I call all the forum members. They are truly my angels...
Lean on us, Tater...you'll never regret it.
Big ((((HUGS)))))
Heather
i am in missouri, i have a sister with ms ,my dr. says no medicine has proven effective fir ppms so he is only going to treat each issue as it comes
SO ARE YOU JUST NEWLY DIAGNOSED?
THATS TERRIBLE THAT YOU WOULD GET THAT DIAGNOSIS THROUGH THE MAIL.
ARE YOU HERE IN THE STATES.HAVE YOU SEEN A MS SPECIALIST?
YOU HAVE EVERY RIGHT TO BE SCARED.REMEMBER YOU ARE NOT ALONE WE ARE HERE FOR YOU
KEEP ASKING QUESTIONS WE WILL ANSWER.VENT WE LISTEN AND ANSWER
T
THATS TERRIBLE THAT YOU WOULD GET THAT DIAGNOSIS THROUGH THE MAIL.
ARE YOU HERE IN THE STATES.HAVE YOU SEEN A MS SPECIALIST?
YOU HAVE EVERY RIGHT TO BE SCARED.REMEMBER YOU ARE NOT ALONE WE ARE HERE FOR YOU
KEEP ASKING QUESTIONS WE WILL ANSWER.VENT WE LISTEN AND ANSWER
T
i am 50 years old, just got my letter in the mail today, i have seen a nuerologist a phsycolgist they both say ppms-- i have right leg weakness, lots of numbness, difficulty swallowing, EXTREME FATIGUE--, incontinence but what scares me the most is--cognitive disorder
WELCOME TO OUR CYBER FAMILY, SORRY TO HEAR THAT YOU HAVE BEEN DIAGNOSE WITH PPMS.
HOW LONG HAVE YOU HAD MS,WHAT SYMPTOMS DO YOU HAVE?
IT'S OKAY TO BE SCARED THIS ROTTEN DISEASE HAS LEFT ME WITH LIMITATIONS. I HAVE
SPMS.
I HAVE DAYS I'M SCARED, I GET ANGRY AND THIS IS ALL NORMAL,THIS FORUM HERE HAS
HELPED ME AND MANY GET THROUGH MANY UPS AND DOWNS.WE HAVE BECOME VERY CLOSE AND I HOPE YOU WILL STAY WITH US.
WE WILL HELP YOU THROUGH THIS AND PLEASE ASK MANY QUESTIONS.WE HAVE A RETIRED PEDIATRICIAN THAT IS OUR DEN MOTHER,LOW AND BEHOLD SHE DIDN'T REALIZE
HOW MANY EXTENDED FAMILY MEMBERS SHE'D GAIN.SHE HAS MS,AND HER WEALTH OF INFORMATION IS OVER WHELMING.SHE'LL(QUIX) BE AROUND TO ANSWER YOU.
THIS BOARD IS GROWING RAPIDLY,BUT MANY WILL BE WELCOMING YOU.
ARE YOU BEING TREATED WITH ANY OF THE DISEASE MODIFYNG MEDS AT THIS TIME?
ONCE AGAIN WELCOME
SENDING YOU HUGS AND PRAYERS
T
HOW LONG HAVE YOU HAD MS,WHAT SYMPTOMS DO YOU HAVE?
IT'S OKAY TO BE SCARED THIS ROTTEN DISEASE HAS LEFT ME WITH LIMITATIONS. I HAVE
SPMS.
I HAVE DAYS I'M SCARED, I GET ANGRY AND THIS IS ALL NORMAL,THIS FORUM HERE HAS
HELPED ME AND MANY GET THROUGH MANY UPS AND DOWNS.WE HAVE BECOME VERY CLOSE AND I HOPE YOU WILL STAY WITH US.
WE WILL HELP YOU THROUGH THIS AND PLEASE ASK MANY QUESTIONS.WE HAVE A RETIRED PEDIATRICIAN THAT IS OUR DEN MOTHER,LOW AND BEHOLD SHE DIDN'T REALIZE
HOW MANY EXTENDED FAMILY MEMBERS SHE'D GAIN.SHE HAS MS,AND HER WEALTH OF INFORMATION IS OVER WHELMING.SHE'LL(QUIX) BE AROUND TO ANSWER YOU.
THIS BOARD IS GROWING RAPIDLY,BUT MANY WILL BE WELCOMING YOU.
ARE YOU BEING TREATED WITH ANY OF THE DISEASE MODIFYNG MEDS AT THIS TIME?
ONCE AGAIN WELCOME
SENDING YOU HUGS AND PRAYERS
T
Honey, I know your scared so the first thing you will probably do is cry and then secondly cry again, finally the last thing you will do is cry again. Once all that is out of the way, then you can open your eyes and know we are here.
Your not going to die but I know your scared because progressing MS could mean a lot of different things. There will be so many people here who will be comforting to you and give you so much information you wont know what to do.
Me, I don't really know enough about it to tell you the medical aspect of it but I'm going to be your friend. I'm here to just talk with or cry with you. Also I can tell you what things MS has done to me. I can help you with the frustrations you are going to face with your own self, your family, and probably your doctors.
Hang in there honey, tell me a little about yourself. I would love to get to know you better as well as everyone here does I'm sure.
You have probably been led here by God because that's the only thing I can think of that is the reason people are led here. He is so kind to us and giving us this forum (family) of our own is truely a blessing.
Please let me know what I can do to help you through this really hard time your going through right now. All of us with MS know exactly how you are feeling so there ain't nothin you can say that will surprise us.
Hang in there sweetie, we are just waiting for you to give us your hand so we can hold it tight and give you lots of Hugs. I have to warn you we are a very huggy bunch of people.
I'll be praying,
Carol
Your not going to die but I know your scared because progressing MS could mean a lot of different things. There will be so many people here who will be comforting to you and give you so much information you wont know what to do.
Me, I don't really know enough about it to tell you the medical aspect of it but I'm going to be your friend. I'm here to just talk with or cry with you. Also I can tell you what things MS has done to me. I can help you with the frustrations you are going to face with your own self, your family, and probably your doctors.
Hang in there honey, tell me a little about yourself. I would love to get to know you better as well as everyone here does I'm sure.
You have probably been led here by God because that's the only thing I can think of that is the reason people are led here. He is so kind to us and giving us this forum (family) of our own is truely a blessing.
Please let me know what I can do to help you through this really hard time your going through right now. All of us with MS know exactly how you are feeling so there ain't nothin you can say that will surprise us.
Hang in there sweetie, we are just waiting for you to give us your hand so we can hold it tight and give you lots of Hugs. I have to warn you we are a very huggy bunch of people.
I'll be praying,
Carol
You are welcome. The forum kind of goes in waves; lots of answers/questions and then may be quiet for a while. It is also New years eve, so people may be busy. In the meantime, y. ou might want to post your "history" (age, symptoms, etc.) and then people will have more to go on, to give you advice.
Take care, Amy
Take care, Amy
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