Announcement

Collapse
No announcement yet.

Ccsvi???

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    #16
    Originally posted by SCI-Nurse View Post
    Just curious about why you were given a SPMS diagnosis if you never had a RRMS diagnosis or pattern?? (KLD)
    One of the many questions I'm trying to find a doctor who give me a straight answer.

    Began with a gradual foot drop of my left leg at age 62. Spasticity increased slowly...visted 4 different neuros who all dx'd me according to their speciality over the next 3 years. Still walking (with a wheelie) went to the Mayo in 2010. They said "PPMS...go to Iowa U for rehab". Saw head of MS at Iowa U in 2011...he's the one who said, "No, I see SPMS. I've got 20 yr olds to treat. Nothing I can do for you. Go away, and only come back if it gets worse".

    As we've discussed before, I get "psuedo-exacerbations", usually in the middle of the night. Starts with slight fever, then chills, then extreme weakness. Lasts a couple of hours. Then I get up, and get on with my day. I've never had a "classic" attack.

    I'm still getting around the house with a wheelie, although my legs are getting weaker for lack of real exercise.

    Comment


      #17
      Originally posted by willingtocope View Post
      Began with a gradual foot drop of my left leg at age 62. Spasticity increased slowly...
      My situation was similar. First I experienced intermittent episodes of myoclonus on the left, accompanied by footdrop after 15 minutes of walking (with rapid recovery); then footdrop following 5 minutes' walking, and slower recovery; then constant footdrop. Rigid spasticity ensued.

      As to why you were initially diagnosed with SPMS (as opposed to RRMS): my guess - and of course, it's only that - is that the diagnosing doctor had reason to believe, based on your history, that you'd actually had prior symptoms that were not recognized as MS (this would have represented the RR phase); by the time you presented to him/her for diagnosis, the symptoms were continual and progressing.

      My diagnosing neuro told me that, based on a detailed medical history, it appeared to her that I might have had symptoms dating back to age 16 - but RRMS can look like a lot of things and is tough to spot initially, so when I got better my previous doctors could have thought everything was okay. According to that scenario, I would have had RRMS, gradually developing into SPMS. But because I presented to the neuro with such an unrelenting picture, and in late middle age, she diagnosed PPMS.

      Maybe something similar applies to you. But who really knows, eh!? Such a confusing picture. With MS, diagnosis appears to be almost as much an art as a science. And it's complicated by the fact that many neuros now recognize a form of MS which is progressive from the outset (PP), but with intermittent periods of exacerbation and relief.
      Last edited by Bonnette; 2 Dec 2012, 5:02 PM. Reason: clarification
      MS with cervical and thoracic cord lesions

      Comment


        #18
        Originally posted by Bonnette View Post
        My diagnosing neuro told me that, based on a detailed medical history, it appeared to her that I had had symptoms dating back to age 16...
        Yeah, the guy at Univ of Iowa laid that on me also. I had bacterial menegitis at 5, herititory "essential tremor", and developed dystonia in my neck in my early 50's...so his conclusion was that I've had MS all my life. This in spite of the fact that I had at least 4 complete MRI sequences begining with a severe back spasm in my mid 20's, including a spinal tap...none of which showed any evidence of MS.

        So...why not Claudia Pnemonia at 5, and my body has been fighting that all these years.

        Comment


          #19
          Originally posted by willingtocope View Post
          So...why not Claudia Pnemonia at 5, and my body has been fighting that all these years.
          Again, it's only a guess, but I'd say that the law of parsimony applies. With a history of bacterial meningitis at age 5, presumably a culture was performed in order for the doctors to know what they were treating. Maybe C. pneumoniae was to blame and no one spotted it, there's always that possibility - I'm just saying that I understand why your history suggests something else to your doctors.
          MS with cervical and thoracic cord lesions

          Comment


            #20
            I'm sorry...I didn't mean to hijack this thread. The OP's original concern was that people were presuring her to get her spouse treated for CCSVI. My point was...at least get ultrasound done on his neck veins. It just might be CCSVI.

            And...Bonnette...remember, for me, age 5 was 1950. They had just discovered penicillion (sp?). It stopped the infection at the time, but I would be surprised if they knew what specific bacteria they were dealing with. Even now, I understand that its only recently they've started looking for C. pneumonia DNA in spinal fluid.

            Comment


              #21
              Right, willingtocope, I did not take those points into account.

              Knight's Wife, ongoing best wishes to you and your husband as you research the CCSVI issue and make your decisions.
              MS with cervical and thoracic cord lesions

              Comment


                #22
                Originally posted by Knight's Wife View Post
                Has anyone here actually undergone it?

                My in-laws won't stop pushing it, despite the fact that we both have said Chris is SOOOOO disabled it couldn't possibly do anything worth the effort and expense for him.

                But I'm still going to, once again, look myself at the current info about it.

                Dr. Young???
                Tell your pushy in-laws that you have investigated CCSVI and have determined that it's not likely to be of value for Chris. Then change the subject.

                I'm so tired of the miracle treatment pushers. I just try to smile, thank them for letting me know about [helminths|peach pits|whatever], and move on.

                Comment


                  #23
                  Originally posted by smashms
                  that to me does not sound like MS at all, if it was true MS then you would have had a full blown attack by now it sounds like something else but not MS
                  That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.

                  The pseudoexacerbations (which last less than 24 hours) due to overheating are also classic.

                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #24
                    Originally posted by SCI-Nurse View Post
                    That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.
                    Yes, PPMS can creep up or gallop, but it doesn't relent. Ever.
                    MS with cervical and thoracic cord lesions

                    Comment


                      #25
                      Originally posted by SCI-Nurse View Post
                      That is NOT the case for PPMS...which does not have "attacks" (exacerbations) or remissions like RRMS. His presentation sounds much like my mother's and others I know with PPMS.
                      Which kind of brings me full circle.

                      While there have not been full blown definitive studies that absolutely resolve the issue one way or the other...there is the Vanderbilt Protocol and Dr. Terry Wahl's Protocol (and, CCSVI, for that matter) that have shown, in some cases, the symptoms that are labeled as MS, may indeed turn out to be something else.

                      If I can find a doctor who will look beyond the label, maybe I'll find a treatment that will alleviate my symptoms.

                      Comment


                        #26
                        Originally posted by Knight's Wife View Post
                        Has anyone here actually undergone it?

                        My in-laws won't stop pushing it, despite the fact that we both have said Chris is SOOOOO disabled it couldn't possibly do anything worth the effort and expense for him.

                        But I'm still going to, once again, look myself at the current info about it.

                        Dr. Young???
                        I think the ultrasound might be a good idea. Not because it could lead to Ccsvi but if he has a lot of blockage in his carotoids than that may be effecting his cognitive skills. If it eases his compulsions or helps his understanding than that might be worthwhile. Otherwise I agree. With what I've read your husband's disease is far enough advanced that he would need regeneration to really help him.
                        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                        Comment


                          #27
                          Hi, I've had CCSVI treatment done two years ago. For me it was a success. What came to mind when I read your post was Annette Funicello's story. There is a documentary that came out recently. She is really really far advanced. 9.5 EDSS. I had no idea it was that bad. Anyway her husband caretaker had been getting up more than once a night to suction her mouth because she couldn't swallow and would choke. After CCSVI he says she doesn't choke anymore and he gets a full night's sleep. It's not a mobility improvement but it's a quality of life and safety improvement. I've had some long-term healing in my mild foot drop since the procedure but the early improvements were all things like vision, fatigue, cognitive fogginess, being able to be outside in the heat, sweating better, bladder issues. For me it was worth it many times over but I know others who tried and got nothing. Good luck and no don't let anyone push you into anything. It's an outpatient procedure but there are still risks.

                          Comment


                            #28
                            Welcome to the community, Sunnywho, and thank you for posting about your experience with the CCSVI procedure - I am very glad that you had such good results!

                            Thank you, too, for letting us know about Annette's current situation. I found this page about her CCSVI treatment and her husband's plans to raise money for research. There are several informative videos on the site, including depictions of Annette's life today. I hope that she and her husband will see lasting benefits from CCSVI. Although her doctor is guarded in his comments (based on the length of time Annette has suffered and the severity of her symptoms), if she and her husband can sleep through a night without suctioning, that is a real boon.
                            MS with cervical and thoracic cord lesions

                            Comment

                            Working...
                            X