Announcement

Collapse
No announcement yet.

I need A diagnosis

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

    I need A diagnosis

    Okay, here goes......over the past 8 months I have 3 major and 4 relitively moderate episodes of stroke like symptions:right sided weakness with gait disturbances, weak grasp, forgetfulness, aphasia, moloclonic jerks and overwhelming fatigue. I have had 2 MRI brain scans, MD states I do not have MS because the plaques that are there are"normal". My EEG was normal, as well as autoimmune lab work to rule out Hashimoto's encepholopathy. MD has put me on 40 mg steriods a day, so now I just eat all day and awake all night. Recover time from these episodes take about a week, but I am not back to my baseline. What do I do next??????

    #2
    Time for a second opinion, I'd say...and an MRI of the cervical cord to check for lesions. I have never heard of "normal" brain plaques; that might be a question for a second-opinion neuro, as well. Best wishes with this, and welcome to the forum.
    MS with cervical and thoracic cord lesions

    Comment


      #3
      I agree. Was this MD a neurologist? One who specializes in demylinating diseases (there are more than just MS)? Were your MRIs reviewed by a neuroradiologist? What other tests have you had? BAER/BSER? Spinal tap? SSEPs?

      (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


        #4
        To answer some questions.....The MD I saw is a neurologist west of Atlanta, Ga. He has been practicing about 10 years. I have had no other testing, tho I hear that there is a good neuro unit in Rome, Ga. where I my go. Also there is the MS Center in Atlanta, where, upon referal I can get an appointment.
        7 months ago I accually had 3 disks replaced in my neck, the Ortho surgon thinking that my symptions were from spinal stenosis. No mention of plaques in the spinal area at that time.
        I am so very grateful for your responces, I feel that I have been put "on the back burner"by the medical establishment. One Doctor thought that I was "just depressed"!
        One other thing, I was diagonosed years ago with fibromyalgia and there has been a question of these symptions are related....I truely don't think so, not with the aphasia.
        Thank you again.

        Comment


          #5
          Kat,
          Do a little research on Mixed Connective Tissue Disease. You already have a diagnosis of Fibromyalgia & you're having TIA/stroke symptoms(which IS common with fibro), and some of your other symptoms sound like other auto-immune issues as well. Recently my mom, who's been diagnosed with Fibro for nearly 30 yrs was diagnosed with Mixed Connective Tissue Disease. Which is essentially a combo of Fibro & a few other of the disorders in the same category, including Lupus, MS, and Scleroderma(sp?). Her dr's are still trying to figure out what the underlying cause is(because there IS a cause or trigger) but knowing it's not ONLY Fibro makes it easier to treat. It sounds like you've got something more going on as well. Maybe it's Mixed Connective Tissue as well. She had one MRI that was read as she had MS and then the next one read Normal and her dr explained that the plaques(white areas) were where there was damage from the TIAs and stroke that she'd had. Every time you have a TIA or a stroke it'll leave a damaged spot on your brain & it'll show up as a plaque on the MRI. You may be having TIAs and that's why they considered the plaques "normal" no, they're not normal, they're damage from mini-strokes....
          'Chelle
          L-1 inc 11/24/03

          "My Give-a-Damn's Busted"......

          Comment


            #6
            In your shoes, I believe I would opt for a referral to the MS Center in Atlanta. Of course, being in Colorado I don't have personal knowledge of that facility, but my thought is that at the MS Center you would likely meet with a cross-disciplinary team of health care professionals who are experienced in ruling MS out, as well as in. If they diagnose MS, you'll be in the right place for treatment; if they think it's something else, you'll get an appropriate referral. At least, that's how it seems to me.
            MS with cervical and thoracic cord lesions

            Comment


              #7
              Once again, thank you all for your input. You have given me some more things to look up. Wednesday I return to the MD, and armed with a little more, maybe I can get some additional test, referal or answers. I will keep in touch. Thank you again.

              Comment


                #8
                Katfish, I'm glad you have a followup dr's appointment. Just last night, Jadis sent me a wonderful website(it is linked to a group of medical facilities) that does an analysis of your fibromyalgia symptoms & sleep disorder symptoms...I knew I would score high but I was quite surprised at the info it gave me back & I'm hoping that my insurace will cover the center that is nearest me so that I can go see them...Their treatment module is exactly what I've been looking for for a while & what my PCP has been working on for me with my adrenal fatigue issues, but they do a TON of tests to narrow down the metabolic and auto-immune issues as well...It might not hurt for you to at least take the little survey that they have online & have them send you the results. It might give you a little more insight.
                The link to the survey is: http://www.fibroandfatigue.com/fibromyalgia-health-assessment.html

                The homepage is Fibro and Fatigue Centers Inc I was quite impressed with what I saw & read and even though I was already quite educated, I learned a lot from my test score. Like I said, I'd like to check into wether or not they're in my insurance network so that i can go there.

                hope this is a little helpful for you too.
                'Chelle
                L-1 inc 11/24/03

                "My Give-a-Damn's Busted"......

                Comment


                  #9
                  Went back to the Neuro. MD today. He told me that he did not know what was causing my symptions, and had no suggestions on where to go/what to do next. (At least he was honest!!!) I have made an appointment with the Atlanta MS Center...maybe they will have some answers. Will let you know. Hope you all have a wonderful Thanksgiving.

                  Comment


                    #10
                    Katfish, even though you didn't get any answers, the fact that your dr was honest enough to admit that he didn't know is BIG. A LOT of dr's have too much ego to admit that & they'll just keep coming up with things to mask the fact that they don't know...Or, as my awful GI dr did, just dismiss it as unimportant, yeah, I fired him...I'm glad you are getting an appointment with the MS center, that's GREAT!
                    Did you know that the MS Society has funding to help pay for your diagnostic MRI's. I know they are expensive & you've obviously had multiple already. My mom knows the website for that information, I'll get it from her and get it to you...
                    'Chelle
                    L-1 inc 11/24/03

                    "My Give-a-Damn's Busted"......

                    Comment


                      #11
                      Katfish - sorry you are going through all this. May I ask you your age? Definitely sounds like it is time for a second opinion. Don't give up trying to get to the bottom of this. You have to be your own advocate. It might be good that your physician was intellectually honest enough to say he didn't know what is wrong, but I think he needs to then say what he would do if you were a family member, where would he go for help.

                      But that doesn't matter because you are taking it in your own hands and seeking another opinion from a neurologist and a multidiscipline-Mayo Clinic model facility.

                      Comment


                        #12
                        Katfish, I'm glad that your doctor had the integrity to admit he's stumped, and also to hear that you plan to go to the MS Center. Do keep us posted. And happy Thanksgiving to you, too!
                        MS with cervical and thoracic cord lesions

                        Comment


                          #13
                          Thyroid conditions can cause Ataxia as a symptom, Cerebellar Ataxia's and MSA (Multiple System Atrophy) also known as Olivopontocerebellar Ataxia. I have a rare form from my thyroid going wrong and it left me with ataxic gait, jerky movements of arms rather than a constant tremor (more common with the ataxias) and difficulty co-ordinating speech/breathing muscles so if try and speak long sentences sound like I'm having asthma attack or something. I also get allergic reactions to stuff I have eaten before, twice having full anaphylactic shock and having to rushed to hospital for steroids and adrenaline. I have difficulty with bladder muscles too.

                          I don't actually have asthma though they did check. Strangers often assume I have CP and if they know about different CP's they tend to assume I'm mild athetoid, due to the involuntary movements I guess.

                          Maybe ask for full bloods panel to make sure the thyroxine has been absorbed and converted properly, even if your body appears to be making enough T4 to be in 'normal range' if its not converting to T3 then basically your body isn't getting fed properly!

                          Comment


                            #14
                            Katilea, it sounds like you & I need to speak thyroid...I've got nodules & my TSH levels read normal when I'm not treated w/Synthroid...when I was on Synthroid(to reduce the nodules, bad move on my md's part) my TSH was way low & I felt like crap & gained a ton of weight...however my endo didn't believe it was possible...I found some information to back myself up & fired that dr & quit the Synthroid...my PCP is treating my adrenal issues but I need to follow up on the nodules again, it's been almost 18mos.

                            You described what happened in such a concise scientific way...
                            'Chelle
                            L-1 inc 11/24/03

                            "My Give-a-Damn's Busted"......

                            Comment

                            Working...
                            X