It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board

  • How long for Primary Progressive Dx?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 06-17-2007, 05:17 AM   #1
    Booty
    Junior Member
    (female)
     
    Booty's Avatar
     
    Join Date: Jan 2007
    Location: UK
    Posts: 14
    Booty HB User
    How long for Primary Progressive Dx?

    How long did it take for you to be diagnosed with PPMS? and what symptoms/test results gave you this dx?
    Any info. would be appreciated.

     
    Sponsors Lightbulb
       
    Old 06-17-2007, 08:53 AM   #2
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    First of all, why primary progressive MS ? DO you already have Relapsing Remittant MS? 95% of people start there. Also, not everyone moves or progreses into Primary Progressive from Relapsing. There are no tests, it is based on criteria which is also based on relapses and progression of the disease. You must truly understand how MS progresses and what it is, to undertstand the stages of MS...

    If you give us some more info about why you are asking, and your status now, maybe we can help more with the question.
    I pray you do not have MS, or if you do, that you are unaware that it normally starts out as R/R...its so much easier to handle that type of MS.

    If you have progressed to the point of Primary Progressive, please tell us how old you are, what symptoms you have, when you were dx and what meds you are on.

    WIshing you well.

     
    Old 06-17-2007, 10:47 AM   #3
    Booty
    Junior Member
    (female)
     
    Booty's Avatar
     
    Join Date: Jan 2007
    Location: UK
    Posts: 14
    Booty HB User
    Re: How long for Primary Progressive Dx?

    MSNik

    I've was told I have early MS a year ago, had symptoms 3 years now, leg/arm weakness, muscle fatigue, cramps. MRIs - lesion spine, LP - positive obands, sensory reduced response, other tests - clonus, brisk reflexes, etc. Walking getting worse.
    On Provigil for last year, Gabapentin six months. Under MS Clinic and have MS Nurse access.
    At last appt. neuro said he was looking at whether it was Progressive MS.

    From what I can tell people without relapses don't get a dx straight away because the Neuro is waiting to see how symptoms progress, but I'm wondering how long did their Neuro wait before deciding for definate when all the other symptoms/results are there, is there a specific timescale marker that neuros look at, i.e. 3 years, 5 years, etc? or do they wait till you collapse or what?!!

    Any helpful info. would be good.
    Thanks

     
    Old 06-18-2007, 05:37 AM   #4
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Petunia, love your attitude! Keep it up, okay?

    Booty, IM still confused. IF you had any signs of MS for the past three years, why werent you dx with MS? And, why werent you put on MS meds? Ive never heard of a doctor, EVER who would THINK MS, test for MS, and then not put someone on MS Therapy drugs! The whole point of MS drugs is to keep the disease at bay and stop progression. If he didnt DX you, then something was missing out of the dx criteria. But, if you had all the criteria, and he still didnt dx you, then you can blame your doctor for not putting you on something to stop this from getting worse.


    Here is what I have learned about Primary Progressive from reading about it: This is in my own words, as the site I read it from is copyrighted, so I couldnt copy and paste the information.


    People with Primary-progressive MS have:
    Steady and wornsening symtpoms from the beginning of their diagnosis.
    Disabilities can level off at some point or may continue to decline.
    There is no relapse or remissionstages, this is a constant disease.
    Most people are over 40 who get this type
    It is the most rare type of MS one can be diagnosed with.

    IT is NOT TRUE that a doctor waits to see how the disease progresses to make a diagnosis, with MS. I had MS dx in less than 2 weeks, based on only one episode. MRIs spinal taps and even some tests can conclusively give a doctor MS dx. Ruling out Lyme, other infections and Fibro are key to making a MS dx. Im still alittle confused per your post as to whether or not you have a MS dx at all...but assuming you dont, and you are concerned , it is now time to get a second opinion. Waiting for a dx and thus waiting for the chance to get on disease modifying drugs is a bad idea. You will continue to get worse if you are not on them. Thats pretty much proven. Some exceptions are people who chose to go the holistic route, if diet, supplements, exercise and other holistic approaches are followed, there are SOME exceptions to needing to be on meds....however, this route is difficult and risky if you do not have guidance on how to appraoch it. The more general route of taking MS modifying drugs to hold the disease at bay, is much easier to manage.

    If I am wrong, and you do have a MS dx and you are on one of the disease modifying drugs, then I apologize, but you have yet to state this. IF this is so, then there is no time period for changing the dx from Relapse/Remittant. You would never have days when you feel good, never have remission. You would constantly get worse and worse and you would probably not be walking at all ....this disease (primary progressive) usually affects the spinal cord MORE than the brain.

    I hope this helps. You say you have an MS clinic and nurse at your disposal. Why arent you asking her these questions to put yourself at ease? Seriously, consider a second opinion. No one is forcing you to wait for anything and your doctors approach of waiting for your next relpase, or until you cant walk, is risking your overall health!
    Good luck,
    Nikki

     
    Old 06-19-2007, 06:09 AM   #5
    hayshe
    Member
    (female)
     
    hayshe's Avatar
     
    Join Date: Apr 2007
    Location: Homestead, Florida USA
    Posts: 78
    hayshe HB User
    Re: How long for Primary Progressive Dx?

    Hi, I too have Primary Progressive and My MS Dr did not start any type of treatment for me for 10 months time. All he did was give me muscle relaxors, etc. The reason he would not start me on any treatment was because I was a smoker for over 30 years and he said I had to stop before he would do anything. So I continued to hurt, as smoking was my only vice at the time. Finally, I was able to quit and then asap he started me on Mitox Chemo. I have had one infusion, next one on the 28th. Hopefully this will stop the progression. I gave up driving as at times cannot feel the bottom of my feet at all. The MS is definitely continuing as more and more things are happening. He also told me if the chemo does not seem to be helping by the fall there were going to be new clinical studies which are pill form that I would qualify for. Take Care all.

     
    Old 06-19-2007, 07:58 AM   #6
    Booty
    Junior Member
    (female)
     
    Booty's Avatar
     
    Join Date: Jan 2007
    Location: UK
    Posts: 14
    Booty HB User
    Re: How long for Primary Progressive Dx?

    Nikki

    Yes I am too confused. I am told I have early MS, I am with the MS Clinic, I have access to the MS Nurse, I'm allowed symptom drugs - Provigil and Gabapentin which are expensive to the NHS (I'm on NHS), I have all the tests to point to MS. So why aren't I formally diagnosed on paper with MS I don't know!!!

    The original Neuro said I needed another attack!!! for formal dx. When things got worse I was passed to a new neuro specialist, I told him of things getting worse and he said they weren't attacks and was querying progressive MS, he said I was in the right place and needed to follow-up in due course. I asked him what he was looking for or waiting for and he said nothing we just need to see how your symptoms progress!! I also said 'well does that mean you shouldn't have said early MS or Mild MS when you did' and he went all strange and kept repeating we need to see how you are in followup.

    A lot of us in UK believe it's all about the money because as a patient we only have to pay minimal towards prescriptions and care etc.

    I'm seeing the same neuro end July. I'm going to write up a list and try and get some answers.

     
    Old 06-19-2007, 01:32 PM   #7
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Good luck to you. I dont even know what to tell you. I have very little knowledge of medical treatment in the UK, Im sorry. I do wish you all the best, and I do encourage you to keep a journal of all your symtoms, and meds and even tests, if you can get them. Youll always need them to refer to. If all else fails, maybe another doctor is the next best thing? Good luck, and stay strong...
    Nikki

     
    Old 06-19-2007, 02:44 PM   #8
    itsadogsworld
    Junior Member
    (female)
     
    itsadogsworld's Avatar
     
    Join Date: Jun 2007
    Location: Ayer, MA, USA
    Posts: 13
    itsadogsworld HB User
    Re: How long for Primary Progressive Dx?

    Quote:
    Originally Posted by hayshe View Post
    Hi, I too have Primary Progressive and My MS Dr did not start any type of treatment for me for 10 months time. All he did was give me muscle relaxors, etc. The reason he would not start me on any treatment was because I was a smoker for over 30 years and he said I had to stop before he would do anything. So I continued to hurt, as smoking was my only vice at the time. Finally, I was able to quit and then asap he started me on Mitox Chemo. I have had one infusion, next one on the 28th. Hopefully this will stop the progression. I gave up driving as at times cannot feel the bottom of my feet at all. The MS is definitely continuing as more and more things are happening. He also told me if the chemo does not seem to be helping by the fall there were going to be new clinical studies which are pill form that I would qualify for. Take Care all.

     
    Old 06-19-2007, 02:52 PM   #9
    itsadogsworld
    Junior Member
    (female)
     
    itsadogsworld's Avatar
     
    Join Date: Jun 2007
    Location: Ayer, MA, USA
    Posts: 13
    itsadogsworld HB User
    Re: How long for Primary Progressive Dx?

    Quote:
    Originally Posted by hayshe View Post
    Hi, I too have Primary Progressive and My MS Dr did not start any type of treatment for me for 10 months time. All he did was give me muscle relaxors, etc. The reason he would not start me on any treatment was because I was a smoker for over 30 years and he said I had to stop before he would do anything. So I continued to hurt, as smoking was my only vice at the time. Finally, I was able to quit and then asap he started me on Mitox Chemo. I have had one infusion, next one on the 28th. Hopefully this will stop the progression. I gave up driving as at times cannot feel the bottom of my feet at all. The MS is definitely continuing as more and more things are happening. He also told me if the chemo does not seem to be helping by the fall there were going to be new clinical studies which are pill form that I would qualify for. Take Care all.
    Hi My name is Elaine and I have been reading this wonderful board for the last few days since I was lucky enough to find it. I am awaiting an MRI and a 1st Neuro appt. but as I read, I am identifying with the symptoms of this type of MS as I never had an acute episode when I was younger. My mom and sister both have that Remission/exacerbation kind. I seem to be getting progressively worse and I read someone's post about this kind developing in people after the age of 40 So, for validation sake, does tingling develop into tremors? My fingers are tremoring as I am writing this. My feet tingle after I walk...everything is happening so fast, has anyone had this happen to them? I love reading this (I have 422 E-Mails as this is the only thing I have been doing since I found it LOL)Elaine

     
    Old 06-19-2007, 04:21 PM   #10
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Hi Elaine, and welcome. Tingles do not usually turn into tremors, however, tremors are a sign of MS...of course, they are a sign of MANY MANY Neurological things. The fact that you say you are getting progressively worse, may simply be that your disease is becoming active. Sometimes, relapses, especially if you have not had one for many years, bring out a whole host of symptoms which may or may not stick around. ITs great that you have an MRI and neuro appt coming up....definately get this looked into now, not later, and start dealing with it.
    Youve come to the right place for information and support. We all have been where you are. Knowing that, please also know the road to dx can be very long, or very quick....hopefully, with your family history and previous symptoms, yours will not be a long jounrey. Start taking notes now, and keep a journal of what you are experiencing pain wise, and symptom wise. THe Neuro will want a full history on you! If you can, get copies of the MRI and all tests for YOUR own records..you dont know where this is going to go, but I can guarantee somewhere down the line, youll be glad you have copies of things..
    Good luck.
    Nikki

     
    Old 06-19-2007, 04:44 PM   #11
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Petunia,

    I (I'm 53) and have the relapsing/remitting kind, which is secondary progressive. When my neuro told me that I had it, I asked if I wasn't kind of old for it, because I remember it as being "the crippler of young adults".

    So I looked up primary MS, and what I have fits the bill.


    Relapsing/ Remittant MS and secondary progressive MS are not the same thing. People with relapsing/ remitting MS experience clearly defined relapses, which are followed by partial or complete recovery periods.
    This is the most common type of MS.

    Secondary Progressive MS patients experience an initial period of relapsing-remitting MS, followed by a steadily worsening disease course with or without occasional flare-ups and remissions.

    Primary Progressive MS is found in less than 10% of MS dx. It is characterized by continuous worsening of the disease with no relapses ore remissions at all.

    I only posted this information because the original poster had so many questions, and is not yet clear on her dx...you have responded to this thread many times, but you go from calling R/R the same as secondary, and then you go onto talk about primary. I believe it is important for other readers to understand the differnces. They are not at all the same. I took this information from a website, but had to put it into my own words, as I am not sure if it is copyrighted material, these are board rules. I suggest that anyone with questions on the stages of MS talk to their neurologist and become clear on this. At age of 40, Im not ready to progress, I take Rebif in order to keep myself as normal as possible, and it seems to be working. Are you, Petunia on any disease modifying drugs? They are only really approved for R/R MS for the most part....I hope that someone at some point put you on a drug to slow down the progression and that you do NOT have Primary Progressive MS.

    Nikki

    Last edited by MSNik; 06-19-2007 at 04:45 PM.

     
    Old 06-19-2007, 06:01 PM   #12
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Petunia, I wish you all the luck in the world. In an earlier post you said you were 53 years old, and now you claim you are going to have a baby in the next year? Youre either amazing, or nuts! Im 40 and have decided to have my tubes tied. I cant even fathom the thought of giving birth or chasing around an infant with MS..As for your comment about your doc not knowing what kind of meds to put you on, there are so few to chose from and they all do pretty much the same thing, its just a matter of choosing Tysabri, one of the interferons (Rebif, Avonex or Betaseron) or Copaxone, which is a synthetic drug... Its not that difficult, sounds more like you are having incredible luck with a very long period of remission. Keep up the good work, whatever you are doing, its working for you. But, please do read up on this...its very much proven that taking one of the drugs prevents permanent disability, however, it only works if you start them BEFORE disability starts...if you wait too long, you might be shooting off your foot as you said.
    Regards,
    Nikki

     
    Old 06-19-2007, 08:07 PM   #13
    itsadogsworld
    Junior Member
    (female)
     
    itsadogsworld's Avatar
     
    Join Date: Jun 2007
    Location: Ayer, MA, USA
    Posts: 13
    itsadogsworld HB User
    Re: How long for Primary Progressive Dx?

    Well,
    After reading Petunia's initial post's, I thought she and I were in the same situation, but now I am kinda confused...I never had an "acute" episode. My feet, after walking, are very tingly and the tingles are progressing up my calf now. My feet tingle more, too! I have VERY brisk reflexes (which no MD seemed to ever care about). My balance is getting worse, my right hand gets cold while I type (DRIVES ME CRAZY )and numb. I also have chronic neck pain which doesn't help. I have been having unexplained pain during the night for the past 8 years which the MD's have not been able to explain. I just read on Web MD about "Burning, aching, or "girdling" around the body" pains and I describe my pain as it wraps around and I can't breathe!!! I am clumsy as heck. Also, I've been dreaming of not being able to walk which is the spookiest thing....So.
    Nikki, you are a fountain of knowledge and thank you so much! I am enjoying reading and I have started writing things down as you suggested.
    Elaine

     
    Old 06-20-2007, 04:41 AM   #14
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 13,063
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: How long for Primary Progressive Dx?

    Youre welcome Elaine. I have knowledge through my own learning. I have had MS for about a year now- officially, but probably have had it much longer. Ive gone thru a real gammut of pains and aches.But, I have managed to see some of the best MS docs on the East Coast. I see a regular Neuro for local stuff and medicine management (Rebif is really all I take, with the occasional sleeping pill) and I see my MS Specialist at least 1 or 2 times a year, taking my MRIs reports, and any additional info to him to evaluate. My next round with him is in late Fall, at which time Ill have had a more recent MRI (dont in Spetember) to show. Seroiusly wondering if I need to be staying n REbif, or moving onto something else. Todays a tough day to think aout that as I am in the middle of my steroid treatment, and feeling better than I have in a while. Your symptoms are neurologic, Elaine. You need to stay the course of a Neuro for now, and start getting things ruled out...only then, can you move forward.
    Stay strong.
    Nikki

     
    Old 06-21-2007, 12:32 PM   #15
    kdel
    Senior Veteran
    (female)
     
    Join Date: Jan 2007
    Location: upstate,NY
    Posts: 729
    kdel HB Userkdel HB User
    Re: How long for Primary Progressive Dx?

    Please forgive me if I've read this wrong but- Petunia, did you say you were 53 and in a weelchair AND trying to have a baby in the next year? WOW that's what I call not letting this disease get you down! If I misread something please let me know otherwise I think you must be some sort of superwoman. Good luck to you.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Primary Progressive timeline jellore Multiple Sclerosis 2 10-12-2009 08:12 AM
    difference between primary progressive and chronic progressive sodapopper Multiple Sclerosis 1 01-12-2009 12:41 PM
    Primary Progressive M.S.... bleedingdove Multiple Sclerosis 14 12-08-2008 05:24 PM
    LLMD on Long Island Anyone ?? Roadworker Lyme Disease 3 08-17-2008 02:13 PM
    what does Primary Progressive look like? zandvoort Multiple Sclerosis 5 04-30-2007 07:56 PM
    Please tell me about Primary Progressive M.S. Aquaticgirl Multiple Sclerosis 2 02-28-2007 08:17 PM
    Long term Dilantin use and MS symptoms mainecoon Multiple Sclerosis 1 06-09-2003 07:45 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:13 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!