Announcement

Collapse
No announcement yet.

HOW LONG BEFORE MRI SHOWED LESIONS

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

    #31
    One told me it's migraines, another said it was psychosomatic. The others say they have no idea.

    Lots of help. Lots of money and time washed down the drain. Lots of wasted, wasted time.

    I can go out hiking 8 miles one day, and then a week later end up barely able to breathe for days on end until I'm pumped up with steroids.

    It scares me, where this is hitting. This is not good. It's unacceptable to me to let this go untreated. End of story.
    It's not fatigue. It's a Superwoman hangover.

    Comment


      #32
      Originally posted by swingingwillow View Post
      @lusciousleaves

      I absolutely empathize with you and can relate to so much of what you're expressing.

      I'm equally frustrated with being sick, the health care system, lots of this stuff.

      Take care,
      swingingwillow
      It's nice when someone else understands.

      This prednisone is making me so moody. I'm going to stuff a sock in it now and read a book.

      I hope my little tirade didn't upset anyone.
      It's not fatigue. It's a Superwoman hangover.

      Comment


        #33
        Originally posted by lusciousleaves View Post
        It's nice when someone else understands.

        This prednisone is making me so moody. I'm going to stuff a sock in it now and read a book.

        I hope my little tirade didn't upset anyone.
        lusciousleaves: Again, please check into myasthenia gravis. It comes with prominent breathing problems during exacerbations and exertion. Some neurologists don't think to look for it, but it has several exacerbations in a year and comes with fever, heat, sickness, stress...much like MS.

        MS generally does not cause breathing problems. The diaphragm is not involved until very very late into the disease and then it is only due to pneumonia. The only breathing problems we experience are due to the MS hug, and that is really not a breathing problem. We can still breathe.

        You might want to see a pulmonologist. A breathing doctor. They could help diagnose your respiratory weakness and get to the bottom of your problem.

        I am sorry you are feeling so bad. Steroids help tremendously in MG as well. It may be something else, but you need to find out why your respiratory muscles are so weak.

        Take care
        Lisa
        Disabled RN with MS for 14 years
        SPMS EDSS 7.5 Wheelchair (but a racing one)
        Tysabri

        Comment


          #34
          Originally posted by lusciousleaves View Post
          One told me it's migraines, another said it was psychosomatic. The others say they have no idea.

          Lots of help. Lots of money and time washed down the drain. Lots of wasted, wasted time.

          I can go out hiking 8 miles one day, and then a week later end up barely able to breathe for days on end until I'm pumped up with steroids.

          It scares me, where this is hitting. This is not good. It's unacceptable to me to let this go untreated. End of story.
          I'm so sorry you've had to go through this luscious...I'm right there with you...2 neuros saying headaches when I've told them I don't get enough headaches to talk about!

          So now, my recent neuro says, ok no headaches, well I think it's due to your fibro and CFS! OK, I can accept that but, what about the ovoid plaques (found on left AND right frontal lobes) and demyelination found on 2 MRIs? Well, not enought evidence, maybe down the road something will happen and something will show up.

          Well, I've met the criteria on the lesions so what about all the other symptoms I've told him about?? My GP is furious with these 2 neuros so now she's referred me to an MS Clinic but can't get me until Feb next year. I guess I'll just have to continue living like this until Feb and hopefully finally since June '05, get some answers! It took over 5 yrs for the lesions to finally show on MRIs.

          I wish you luck and hopefully you and I both will find some answers!

          Comment


            #35
            lusciousleaves,

            I don't know if what you are dealing with is MS or not, not even going to try and guess

            I don't believe there is anything "typical" about this disease. I have had 5 exacerbations in the last 27 years and there is still a huge question mark if I have even transitioned into Secondary Progressive.

            You are currect: I was having a severe exacerbation at the time of my diagnosis. My symptoms at the time of diagnosis:

            - L'Hermittes
            - Numb from the waist down including the girlie parts
            - extreme fatigue
            - tingling/pins & needles from the waist down
            - virbrations/buzzing from the waist down
            - mobility extremely affected; I could bearly walk or lift my feet
            -extreme pain; anything touching me (clothes, sheets, blankets, a gentle touch/hug was quite painful. Trying to put socks/shoes on or get dressed brought me to tears due to the pain

            The MRI initially showed "something" and I was assured it was not a tumor. I had to go back in for another MRI to recheck what was seen on the first MRI, second MRI came out clear.

            If I am understanding currectly you have not had any test that came up positive? It really is almost impossible to get a diagnosis of MS without testing that would point in that direction.

            My diagnosis was based on neuro exam, positive LP and symptoms. Based on my presentation my neuro said the disease was affecting the spinal cord. He was correct.

            Any doubt that I or my neuro may have had was put to rest one year later when I had my second severe exacerbation which was exactly the same as the first... except worse.

            I do hope you find answers to your symptoms as well as the relapses you seem to have.
            Diagnosed 1984
            “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

            Comment


              #36
              I have had tests that come up positive, neuro-ophth dx migraines or demyelinating disease. Also fixed scotomas and Marcus Gunn pupil, color vision loss.

              VNG picked up lesions, one old, one new. It's what prompted the MRI. BAER started out abnormally slow, then sped up to normal at the end, which neuro said was confusing. He wasn't sure whether to call it normal or abnormal, so called it normal.

              The EEG showed abnormal intermittent slowing, but he called it normal. Once the VNG showed up abnormal, he used that EEG result as further indication for ordering the MRI.

              These tests were all done by the neuro who ruled it to be psychosomatic. NCV was normal, which would point away from MG, if I remember correctly. There are other indications this wouldn't be MG but more CNS. Brisk reflexes, which increased at my last visit on one side that had just been hit with another flareup, is one of those. MG is decreased reflexes?

              Things aren't exactly normal on the tests. It's all a matter of professional judgement. They're abnormal enough to dig further and indicate a problem. The fact there are symptoms along with these test results would be a huge clue there's a problem somewhere. You think?

              MS can affect breathing if it hits in the right area. It can also affect blood pressure and heart rate and rhythm, and sometimes when I have these flareups, all of that starts getting erratic, almost always at the same time, with dizziness and the feeling that I might pass out. Autonomic dysreflexia is a possibility. It can also cause bronchospasm. It's not out of the realm of possibility.

              I can deal with the flareups with vision loss and leg weakness so much better than this trio. It's more inconvenient than anything. This is worrisome.
              It's not fatigue. It's a Superwoman hangover.

              Comment


                #37
                Originally posted by lusciousleaves View Post
                I have had tests that come up positive, neuro-ophth dx migraines or demyelinating disease. Also fixed scotomas and Marcus Gunn pupil, color vision loss.

                VNG picked up lesions, one old, one new. It's what prompted the MRI. BAER started out abnormally slow, then sped up to normal at the end, which neuro said was confusing. He wasn't sure whether to call it normal or abnormal, so called it normal.

                The EEG showed abnormal intermittent slowing, but he called it normal. Once the VNG showed up abnormal, he used that EEG result as further indication for ordering the MRI.

                These tests were all done by the neuro who ruled it to be psychosomatic. NCV was normal, which would point away from MG, if I remember correctly. There are other indications this wouldn't be MG but more CNS. Brisk reflexes, which increased at my last visit on one side that had just been hit with another flareup, is one of those. MG is decreased reflexes?

                Things aren't exactly normal on the tests. It's all a matter of professional judgement. They're abnormal enough to dig further and indicate a problem. The fact there are symptoms along with these test results would be a huge clue there's a problem somewhere. You think?

                MS can affect breathing if it hits in the right area. It can also affect blood pressure and heart rate and rhythm, and sometimes when I have these flareups, all of that starts getting erratic, almost always at the same time, with dizziness and the feeling that I might pass out. Autonomic dysreflexia is a possibility. It can also cause bronchospasm. It's not out of the realm of possibility.

                I can deal with the flareups with vision loss and leg weakness so much better than this trio. It's more inconvenient than anything. This is worrisome.
                Louciousleaves: you can get autonomic dysfunction with brainstem lesions. It is possible that you have a small one that is undetectable yet by MRI. Even small ones can cause great symptoms.

                Hang in there and eventually it will show up if it is there. The only other option is to ask for a stronger T level MRI.

                Sorry this is so hard for you. I have many brainstem lesions and they can be quite hard to deal with. Perhaps that is why you are having so many symptoms back to back. I don't know, but whatever it is, I hope you find an answer soon. I know how hard it is to not find an answer.

                My hope is that the steroids at least give you some relief. Keep in mind that they will sometimes make it worse initially, and take a little while to work, but what damage is there will be there.

                Hope you feel better soon.
                Lisa
                Disabled RN with MS for 14 years
                SPMS EDSS 7.5 Wheelchair (but a racing one)
                Tysabri

                Comment


                  #38
                  hi

                  Dear its sad to hear this. I am sceptical about the MRI... but seems like US are very hard on diagnose MS. Well..

                  I went to the dr with walking, fatigue and stiffness problem and heath sensitivity he checked for cancer, anemia, b12, diabetes, Hypothyroidism. Bloodtest was all "perfekt" in dr opinion.

                  I start to think about what It could be, Pfeiffer's disease or depression. But I didnt feel depressed eighter. In start of this fall the h was back. After 2-3 month with peace. Dx first put the CFS/Me as the suspect disease.

                  Later The doc send me to a nevrology check on a hospital far from my town. Ive got blurry vision and could not judge the traffic, so walk through the street in the city is kind of risk for me

                  I thought this was just imagenation and I just went nuts.
                  But 1 week hospital stay I got the diagnosis. The neurologist also confirm that I am not nuts and my vision is not so well.

                  I got diagnosis without MRI lesson. I found this from a norwegian nevro handbook

                  "Hvis pasienten har hatt 2 sikre kliniske attakker (begge observert eller ett observert og ett sikkert anamnestisk) kreves det ikke at MR kriteriene er oppfylt, men man skal være nøye med å utelukke andre årsaker hvis MR er normal"

                  ENGLISH/

                  If the patient has had 2 make clinical relapses (both observed or observed one and one certainly anamnestic) does not require MRI criteria are met, but one should be careful to rule out other causes if MRI is normal.
                  (Depression,

                  - observed one and one certainly anamnestic (VEP) Optic Neuritis

                  - clinical founds
                  - my medical history.

                  Why so many souls suffering here? Are we in scandinavia do it different or? So sad to hear about the limbo stages

                  Comment


                    #39
                    I hear you about the psychosomatic thing too. Me thinks it's not a good enough explanation...
                    Take care,
                    swingingwillow
                    Limbo lander on hold with a fast busy signal...

                    Comment


                      #40
                      Just wanted to add that even though I seem to be going through the same ride on the health care system as you are, I am also pursuing other causes for my poor health with the help of my GP. However, he is convinced that I have MS and always has that at the top of my list to rule out.

                      But with that said, I go to other specialists as well. And I go to other neuros for other opinions too which sometimes includes ruling out MS and sometimes it's to rule out other odd stuff.

                      Take care,
                      swingingwillow
                      Take care,
                      swingingwillow
                      Limbo lander on hold with a fast busy signal...

                      Comment


                        #41
                        Originally posted by swingingwillow View Post
                        I hear you about the psychosomatic thing too. Me thinks it's not a good enough explanation...
                        I dont understand what you mean?

                        Comment


                          #42
                          Rina, thanks for sharing. How you describe these worldwide guidelines is how I've read them. Obviously, different standards apply in different countries. As I understand, treatment costs are lower across the big pond than here in the US as well. Could be a major factor. I do believe private insurers in the US have a huge bearing on who gets treated and what supporting evidence must be included to justify treatment.
                          It's not fatigue. It's a Superwoman hangover.

                          Comment


                            #43
                            Originally posted by rinarina View Post
                            I dont understand what you mean?
                            Rina, psychosomatic is the biggest brush off diagnosis in the US by doctors for all of the crazy symptoms. Instead of taking it seriously and doing tests to find the answers, they conclude it's all in your head and refer you to a psych doc.
                            It's not fatigue. It's a Superwoman hangover.

                            Comment


                              #44
                              Originally posted by lusciousleaves View Post
                              Rina, psychosomatic is the biggest brush off diagnosis in the US by doctors for all of the crazy symptoms. Instead of taking it seriously and doing tests to find the answers, they conclude it's all in your head and refer you to a psych doc.
                              I see, but no. my doc ruled out psychosomatic as the answer. I feel sorry for Psychosomatic patient. Some of them even aren't but suffer of cases like fibromyalgia or CFS.

                              Comment


                                #45
                                Originally posted by swingingwillow View Post
                                Hello all,
                                I can relate to the frustration with this.

                                An MRI that I had one year ago when I was pretty much symptom free showed a few white matter lesions. The neuro said that they were in the wrong area of my brain and said that it must be my migraines that caused them. I don't have migraines, but by then he had stopped listening to me.

                                I am in the midst of I guess what one would call it a flare up and I am left with my right leg not working properly when I walk and I walk like I'm drunk. I use a cane.

                                I had an MRI during this latest flare up and now I have an MRI which shows no lesions.

                                I don't know if I will ever get any answers. But I'm hard headed and so is my GP so we will continue to pursue.

                                I can empathize if that is of any help.

                                Take care,
                                swingingwillow
                                I have the EXACT same symptoms!! Multiple MRI's have not shown lesions. It's been several years now and my symptoms are getting more severe especially when it's hot out. I've recently had to start using a cane which is really embarrassing and I tried to hide it as much as I can. My right leg tends to really give me trouble and I walk like I'm drunk and I'm dizzy all the time. Since your symptoms are so identical to mine I am wondering if you ever found out what your issue was...

                                Comment

                                Working...
                                X