Announcement

Collapse
No announcement yet.

Did I miss out? Maybe a newbie

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

    Did I miss out? Maybe a newbie

    Hi all-
    I am hoping for some feedback and this looks like the place
    For years I have been back and forth to doctors with symptoms of primarily fatigue, migraines, dizziness, numbness and aches and pains that would come and go. I feel like I have not been living my life for the past 6 years. During this we’ve found issues that made me hopeful of getting some relief. Last year I found I have a birth defect in my aortic valve but that is not the source of my symptoms. During a CT to look at my aorta they found a decent size nodule in my thyroid. I thought that was the ticket since the fatigue which has been my primary complaint is also a symptom of thyroid issues. But all my labs are good and have been since the nodule was found. I was also tested for Lupus as my son has an autoimmune disease and the doc wanted to rule it out. Came back negative.

    I had a sleep study which came back with moderate apnea so I use a CPAP now. Vitamin D was low so I take a supplement. Other than that, I have been dismissed. The past few years have been stressful. My 27 year old sister died in June 2010 from a rare cancer and my son was diagnosed with Type 1 Diabetes (autoimmune) August 2010. My nephew needed a bone marrow transplant 5 years ago and was quite ill for a year before, possibly an autoimmune prompted case of aplastic anemia. He is well now thank God. His mom, my older sister, was killed in a car accident about 15 years ago. Of course, these things are in my medical record as family history and so my being so fatigued is dismissed as depression. Yes, these things break my heart but I know they are not why I feel like crap. And my muscle weakness is not just lack of conditioning.

    I have had migraines for years that come with some vision issues, usually just the aura though which can vary in severity. Just before Thanksgiving I had the aura early in the day and then that night the most severe occurrence I’ve ever experienced. With the blink of an eye, it was like my eyes were bouncing around in my head at least that is what I was seeing, although my son looked at my eyes and said they looked normal. This lasted about 5 minutes and subsided but I had a severe headache, blurry vision and felt seasick for a few days. I just chalked it up to a bad migraine as it had been a very stressful day.

    A few weeks later I had another incident of feeling like I was falling although I was sitting. I went to a different doc in the medical group I go to. She ordered an MRI which I had last week. It came back with “possibility of demyelinating disease such as multiple sclerosis or ADEM. These 2 enhancing foci raise the possibility of active demyelinating plaques.” There are no sizes of the lesions just noted as small which I assume is good.

    I see the neurologist tomorrow and will also get a cervical spine MRI as I have had numbness in both arms for a few days.

    Givne my other family medical issues, i am in the habit of gathering info and of course have been researching symptoms, treatments, etc. to get prepared for my appointment. It is overwhelming to say the least and I find myself getting a bit angry as I look at symptoms. I had presented with a list of MS symptoms at one point or another with my doc, who considered Lupus due to the autoimmune issues in my family but did not consider MS. It kind of boggles my mind. i am mad at myself a little too. When I saw the vitamin D relationship I was shaking my head.

    At any rate-the question I have is if any of you were denied certain treatment due to being ‘too far along’ for lack of a better phrase? My concern is that due to the years that have passed and what I am now considering is potentially permanent damage as my arms get weak just scrambling eggs, there are treatments that I missed out on.

    In looking at the DMD available, there are ones I probably would not take due to the potential cardiac issues and depression. Copaxone looks like one I would prefer if it comes down to it but I read info about stages it is approved for and not sure I apply.

    I am the single mother of a 15 year old and want to make sure I take advantage of every possible treatment that will allow me to be able-bodied as long as possible. I also wouldn’t mind getting some of my life back even though I know I am doing better than most. I am able to work and can take care of most of the household stuff. I got over worrying about the dishes not being done long ago

    I apologize for the rambling and I know some of you will be thinking I am jumping the gun but i can't help myself as I feel like this has been dragging out for years.

    Thanks!!

    #2
    Hi tcolatte

    It's not too late to find out if you have MS and begin treatment if you do have it! You've gotten an MRI and an appointment with a neurologist to make sense of it all so you know it too.

    It's no fun to be in that limboland where you don't know what's happening, but the path toward finding out one way or the other if you have MS can be really twisted and frustrating. You have lots of issues that a doctor has to sort through and eliminate as causes of your condition.

    Have faith in your doctors to untangle things for you. I really hope you don't have MS, but in any case hope that you can get some answers. Stop back and let us know how you're doing.
    Dan

    Comment


      #3
      Hi tcolatte. Limbo isn't a fun place to be but there are many of us in the same boat. It's been a year for me since the possibility of ms was raised, and I'm only just starting to trust the process -- initially I had the same feelings as you (if it's MS I want treatment now, oh no is it too late?, this can't be rrrms oh no i have ppms etc., etc.).

      However, there have been only minimal changes to my MRI despite recurring relapses, and neuros don't want to dx MS and give treatment until they are 100% sure. The treatments have their own set of side effects, and if it IS a mimic, treating for ms may actually make things worse (plus delaying in appropriate treatment for the mimic).

      Not saying you do have ms ... but if you did, 6 years ago you very well might not have had an mri/LP/VEPs/other tests suggestive of it. Neuros need absolute proof. Which would have meant 6 long years of limbo ... many here have waited longer.

      I also have thyroid nodules (but levels fine), low vitamin D (I've been taking 2000 i.u./day since May and I'm finally almost to the bottom end of the acceptable range lol). Also have moderate sleep apnea (AHI was 29) -- that alone can cause a LOT of organ damage, and your sleep doctor's evaluation is important.

      Because my lesions are "too small" my neuro is carefully (AND OH SO SLOWLY ) ruling out many other things. Patience is hard . Just got cleared by the cardiologist as having no cardiac reason for my right side weakness/coldness. Next up ... respirologist.

      Has your gp given you meds for symptom relief? Have you had bloodwork/tests for mimics? That will likely be your next step if not.

      Last (sorry this is long) ... Wednesdays at 8 p.m. (EST) is a scheduled chat called "Patiently Waiting" -- a good place to visit for those of us IMpatiently waiting . Come join us!

      I hope you don't continue in limbo -- that ms can be ruled out (hopefully) or if not, that your dx is straightforward at this point. Know that you are not alone in the journey.

      Comment


        #4
        thanks Dan and aspen for your comments. They are comforting. my second MRI showed at least 1 lesion on my spine. not sure where yet as Dr called and told me. I haven't seen the report yet. she had the group's MS doc look at it and he said it looks like early MS. i see an MS specialtist this week at one of the centers in Chicago for a second opinion. the neuro I talked to today did offer me some steroids for the moment and starting talking about Copaxen in the long run. We agreed I'd talk to the MS specialist about the Copaxen. i am on the fence about the steroid at the moment and have a call into may cardiologist. the only thing i have to worry about at the moment with regard to my value issue is infections. I understand steroids leave you more open to infection so i want to get her take. i think they will help as the stress of the call this morning gave my vision a little tweak. Thanks again for comments.

        Comment


          #5
          Hi and welcome. I hope you get some answers soon.

          Comment

          Working...
          X