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    #16
    Well my dear.. I can appreciate ALL you are going through.
    What happened at your neuro appt?

    Hugs, Jan
    I believe in miracles~!
    2004 Benign MS 2008 NOT MS
    Finally DX: RR MS 02.24.10

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      #17
      Neuro appt./tremors

      A good spirit existed at the appointment. Will try Lyrica instead of gabapentin. Sd it is stronger for tremors, less side affects. (altho research speaks of lots of side affects).

      I am scheduled to be assessed for vocal, occupational, physical therapy and begin treatment.

      I am processing this. The side effects are the beginning of pharmaceutical experimentation which I hate....confusion begins as symptoms mix with drug reactions....but believe the assessments for therapy may identify tremor origin more clearly.

      None of my unusual symptoms that wd come from MS were addressed....and he felt the tremors could resolve and were not the result of a degenerative process such as Parkinson's or MS.

      I believe it is "selective listening" which creates "selective histories" which result in inaccurate accounts of disease progression. All hindering the cure for MS.

      My legs are buckling, wavering, and weakening...but focus was concentrated on my left sided tremor.....

      Two choices....have faith in the medical expertise and follow the counsel....or.....I am actually thinking of weaning myself off gabapentin and letting my body do the rest..

      It is difficult to follow advice that is based on theory....the explanation I received..I have tremors...no origin etc...

      On the other hand, as I work with the therapists, the muscle/nerve relationship may be more defined....

      Just numb to the whole thing now....I am at peace with the disease process, I need no diagnosis, and am following the medical course in large part for my family.

      Jan, thank u for asking...as I said in my post, I truly felt the strength of those from this forum...I don't suffer as much as many of you, and I hv bn blessed in so many ways, I cannot complain.

      I value all of you who are ahead of me in this journey....Your comments and stories are important. Thank you for sharing.

      Comment


        #18
        Ahh.. thanks for letting us know how your appt went. And YESS you do suffer so please do not underestimate your condition or how it has affected your quality of life ok my dear?

        Go for the PT, OT, vocal evals/therapies. You'd be surprised at how THEY know what is and is not working. They then write their report to the referring doc and rule in/out what he is thinking.

        And why did he not notice your weakened legs? Well he is the tremor doc..but I would get his notes for your own records. Again is it back to the orig neuro who referred you?

        Again, it never ceases to amaze me how writing an RX makes some of these docs feel they are doing something rather than thinking outside their box of their training. OH well..that is me. Remember I am a medical enigma LOL. At least he does not think it is Parkinson's. Has it done all the tests to rule it out? And I wonder if he knows enough about MS to consider it at all? Just thinking out loud here..

        I understand you not pursuing a NAME for what is going on..but trust me, it may feel good to have a name to this monster swallowing up your precious lifestyle. AND you may have more than one disorder/ disease process going on which stumps some of these docs.

        Let me know how Lyrica helps..

        Hugs to my huggable friend~
        Jan
        I believe in miracles~!
        2004 Benign MS 2008 NOT MS
        Finally DX: RR MS 02.24.10

        Comment


          #19
          Hi all,

          I was diagnosed earlier but believed the doctor was wrong, and 5 years later at 60 I realized that well, maybe, it might be correct. Symptoms had occurred but remitted at least for a decade prior but they always went away so I ignored them. I have been on treatment since 2005 and improved some.

          I have worsening tremors that occur sometimes without warning but not consistently. Makes going out to dinner interesting - always try to order food that is easy to eat in case my fork goes crazy. I am finding that not all my problems are fixable - drugs are only so effective, and the symptoms worsen regardless. I take Lyrica for neuropathy pain and it is an expensive but effective drug. My DMD is through the VA but Lyrica is not on their formulary so I take both Lyrica and supplement with Neurontin because it is free.

          My legs are strong right now but I was in a wheelchair last summer, cannot understand the difference. The weakness will come on with use though; however, my office evaluations have only done testing while rested. I can push up and down both legs and arms during a test pretty strong, but have me walk for 5 minutes and see how I can hardly pick up my feet to walk further. The testing is ineffective unless you cannot move at all.

          Stay strong, keep trying to monkey with your meds to enhance your abilities to the max and be your own best advocate. I pray a lot for faith in my caregivers as well as healing and find that my abilities have picked up in spite of the immense heat.

          I have gone to a fair number of MS lunches and dinners through Bayer and MS Lifelines. I have been struck by the vast difference in MS patients and the effects of this disease. Some you can't tell, some are in wheelchairs but upper body is fine, some are so spastic that they walk like they are being prodded with electricity, some are global and on a great deal of medications. It is hard to believe that it is the same disease when the symptoms presented are so varied, and of course, I am still unconvinced that I have the disease. My VA neurologist broke my heart on the last visit when he assured me that he only treats MS and he has seen my MRIs and I most assuredly have MS.

          I would prefer a disease with a cure and am weary of the increasing symptoms along with normal aging process. The pain is difficult to treat with chronic kidney failure, because most anti inflammatories that work for me are on my no, not now or ever list. My list of autoimmune diseases has increased to include thyroiditis, rosacea, psoriasis and possible sarcoidosis causing kidney failure.

          This is not how I planned for my retirement. My husband has challenges but they have all been corrected with treatment - cancer, heart disease, etc. I was the healthy one and can't keep up with him now.

          Comment


            #20
            Symptoms after 60....update

            Update: so I go for the therapy evaluations. At the risk of sounding paranoid, I got the distinct feeling the voice and occupational therapists believed I am mental....

            The voice therapist said because my speech was inconsistent, she didn't believe it was neurologically based.....and was bored with any medical history.."I am here to work with your voice" and sd at the end, "you are a nice lady so I would be willing to work with you a couple of times to see if I cd enhance your voice" then suggested yoga may be the path for me.

            The occupational therapist: I told him while I was waiting I tried to type normally on my I pad (rather than one finger) and discovered that my ring finger on my good hand would not respond...wd just tremor instead.

            He looked at it and said maybe the knuckle is jammed.....

            After one hour he gave me finger exercises to do, and told me he thought the best thing for me to do is have one face to face experience with a friend once a week.

            The physical therapist obviously conferred with the others before seeing me. She began with a condescending manner until she tested me.....I felt she treated me like an old woman........and when you are as active as I have been, it is hard ....anyway, in testing, my GOOD leg ...the one that does not tremor ..... is my weakest.....and I limp when I walk putting more weight on my left leg....

            She gave me one exercise...stand at a chair and raise my leg....and told me to commit to 30 minutes per day of exercise.

            Wellllllll........what can I say. I slept for two days to recover. In defense of the therapists, I have concluded that no words...nothing...can convey the symptoms so many of us experience.......AND...as long as they do not comprehend and record it in the "evidence based" notes....it will not change.

            I had severe migraines several times a week beginning at 5 yrs old. We noticed that chocolate was a trigger. When we told the doctor, he laughed. Hmmmmmm, FINALLY, after 60 years, it has been noted, and recognized that chocolate along with many other things trigger migraines...... Get my point?

            Medical people are so intimidated to venture outside of protocol to then be scrutinized by insurance ..and soon government...administrators..no one wants a spot light on their practice...I know from having worked in hospitals, clinics, and co partnered my husband's chiropractic practice.

            We would challenge the establishment and tell the truth..my husband was an excellent physician and proved with pre and post X-rays and exams many mis diagnosed cases. He saved many people from being washed out of the system...so I base my opinion on experience with clerk typists who feel empowered with "protocol" regulations based on "evidence based" medicine.

            "evidence based" medicine now controls our health industry. But when you look closely at it, it simply is a collection of data by people who hesitate to EVER record the bizarre..the unusual...or try to treat outside of the box.

            Well, my short update...morphed into a vent....and I certainly could continue if I was able to climb up onto a soap box...

            My course of action is....reduce my gabapentin from 1200 slowly to 600 if possible....to see what my tremors will do...and consistently exercise every day..swimming and doing leg push ups on my total gym....I will wait to start the lyrica as I CANNOT gain any more weight..I hv gained 40 pounds since starting GABA...

            I will try not to sleep as much...move more...and spend more time thinking of others than thinking of myself....I am tired of a world in which my first and last..and continuous...thinking is what is exploding in my body....I had four gasps last night that awakened me, and then an episode where I bit my tongue causing it to bleed.......hmmmmm, must be mental, ya think?

            After my experience with the testing, I am convinced that my strength comes from my husband, my Lord, and my new friends with funny names...God bless each of you...including you lurkers out there...collectively, we are a voice that just might make it into the "evidence based" journals one day....silent, we just exist, and those who follow will be heard less........

            Comment


              #21
              [QUOTE=New normal;1374686]Update: so I go for the therapy evaluations. At the risk of sounding paranoid, I got the distinct feeling the voice and occupational therapists believed I am mental....

              The voice therapist said because my speech was inconsistent, she didn't believe it was neurologically based.....and was bored with any medical history.."I am here to work with your voice" and sd at the end, "you are a nice lady so I would be willing to work with you a couple of times to see if I cd enhance your voice" then suggested yoga may be the path for me.
              HUH? Yoga for voice? That is a new one.. isn't?

              The occupational therapist: I told him while I was waiting I tried to type normally on my I pad (rather than one finger) and discovered that my ring finger on my good hand would not respond...wd just tremor instead.

              He looked at it and said maybe the knuckle is jammed.....

              Again~HUH? What about ALL your other tremors? He sounds like a poor or inadequte evaluator.

              After one hour he gave me finger exercises to do, and told me he thought the best thing for me to do is have one face to face experience with a friend once a week.
              HUH? He must think it is psychological..prompted by whom I wonder? hmm..

              The physical therapist obviously conferred with the others before seeing me. She began with a condescending manner until she tested me.....I felt she treated me like an old woman........and when you are as active as I have been, it is hard ....anyway, in testing, my GOOD leg ...the one that does not tremor ..... is my weakest.....and I limp when I walk putting more weight on my left leg....

              She gave me one exercise...stand at a chair and raise my leg....and told me to commit to 30 minutes per day of exercise.

              Did she SEE any tremors? Did she notice your leg was weaker at all? OH to exercise 30mins... a dream one day. Did she know of how much you WERE active?


              Medical people are so intimidated to venture outside of protocol to then be scrutinized by insurance ..and soon government...administrators..no one wants a spot light on their practice...I know from having worked in hospitals, clinics, and co partnered my husband's chiropractic practice.

              We would challenge the establishment and tell the truth..my husband was an excellent physician and proved with pre and post X-rays and exams many mis diagnosed cases. He saved many people from being washed out of the system...so I base my opinion on experience with clerk typists who feel empowered with "protocol" regulations based on "evidence based" medicine.

              "evidence based" medicine now controls our health industry. But when you look closely at it, it simply is a collection of data by people who hesitate to EVER record the bizarre..the unusual...or try to treat outside of the box.

              Well, my short update...morphed into a vent....and I certainly could continue if I was able to climb up onto a soap box...

              Please do not be offended, but this statment made me laugh out loud LOL

              My course of action is....reduce my gabapentin from 1200 slowly to 600 if possible....to see what my tremors will do...and consistently exercise every day..swimming and doing leg push ups on my total gym....I will wait to start the lyrica as I CANNOT gain any more weight..I hv gained 40 pounds since starting GABA...

              I will try not to sleep as much...move more...and spend more time thinking of others than thinking of myself....I am tired of a world in which my first and last..and continuous...thinking is what is exploding in my body....I had four gasps last night that awakened me, and then an episode where I bit my tongue causing it to bleed.......hmmmmm, must be mental, ya think?

              Keep a log of your symptoms still.. I don't get it, but they all must've known something that "colored" their viewpoint for sure. Hang in there...

              Hugs, Jan

              I believe in miracles~!
              2004 Benign MS 2008 NOT MS
              Finally DX: RR MS 02.24.10

              Comment


                #22
                Doctors

                Man I can relate to so much I have read in this forum. I too fill like I am just pacified because I am older.

                Comment


                  #23
                  I can so relate to your comments. It was great to hear from someone diagnosed 'late'in life. I was diagnosed at 64, although my neuro says some of the lesions were 30 years old. I can remember that an mri was requested at 33, but I am really clostrophobic and declined, the lack of leg movement improved so I carried on. A mistake? I don't know!!! Medications were not so helpful then!!
                  I now take compounded 4x aminopyridine. It has helped with brain fog, walking and general coping ability. Lots of vitamins, acupuncture, physio. Will this help in the long term? I don't know. But I have been lucky. Some of the young ones diagnosed have such a hard time and a long struggle. I wish you all the best in your efforts to find a solution and a way of coping with this disease which is so different for everyone.
                  This site does help you feel you are not alone on the journey. Trust yourself. You are the one who has to deal with the symptoms and effects of treatment, so you make the choices. Good luck!!!

                  Comment


                    #24
                    Over 60 and it can't be MS

                    I can relate to all the postings here. I have almost given up finding a diagnosis. I have (ataxia) not exactly a diagnosis, continue to recover from a fractured hip because of very poor balance

                    Have all symptoms of MS but now I'm just to old. Isn't it odd though that after diagnosis most people are told that they have probably had MS for 20 years.

                    I am losing my ability to walk. I exercise daily to try and keep my legs strong but I'm losing ground. I enjoy reading everyone's posts especially enjoy the humor.

                    Hugs to all. No Dx just symptoms. Baydenoc

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