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steroids for mild case of transverse myelitis side effect question

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    steroids for mild case of transverse myelitis side effect question

    OK, long story. After all my tests the neurologist said that I had a mild case of transverse myelitis, it only affected the left upper side of my body, left arm, chest, face, head. Anyway they gave me IV solumedrol for 3 days and than did the taper (which I am still on) 7 days of 6 pills than decrease by one each day.

    I have had horrible side effects from the steroids. Here is what happened, last night I was walking 2 boys across a street, they decided they were going to start running (as they were holding my hands) so it happened very fast but needless to say I fell. I went to take a step and when I did my right foot wasn't there. I know that sounds weird but I was trying to put it down and it was gone (obviously it was still attached I just had no control) but this was my right foot not left.

    It took me a minute but after I fell I got up and made sure that the little boy was ok (he was fine) that was my biggest concern. I got him to a safe place and took care of him. Anyway when I went to take care of myself I noticed that I was wet (ok this is TMI I know) I apparently had wet myself, but didn't know it. I usually do not have this kind of a problem. I didn't feel it happen didn't know it happened until I went to the bathroom to clean up my legs that were bleeding. I have had urgency issues for quite some time but wetting myself is usually reserved for when I can't stop coughing or something like that and even then not usually that much. My foot was numb for awhile afterwards. Didn't even hurt until this morning when I woke up. than I saw that my big toe is black and blue.

    My husband says that I am over reacting that this is probably just a side effect of the steroids. But I don't know I am a little worried and wondering if I should call the neurologist and talk to them again. I just don't want to look like an idiot.

    Sorry if this doesn't make sense but I am trying to find out if you think any of this could be the transverse myelitis or a side effect of the steroids.

    #2
    addition to question

    I realize while reading this again it looks like I am saying what happened last night was the horrible side effects from the steroids. That was not my intention. I have been having side effects from day one. A whole myriad of side effects. I am just concerned about last night and whether I should just chalk it up to another in a long list of side effects, the other stuff seems obvious that they are side effects from the steroids.

    example: burning eyes, hot flashes, horrible headaches, rash on head, swelling, rapid heart rate, just to name a few.

    Comment


      #3
      Hi Chellebelle

      Although I have no experience with Transverse Myelitis or Steroids, I just wanted to say I feel for you and the predicament you were in last night.

      I have MS, and I have been in many predicaments over the years (not fun).

      Hopefully someone with steroid experience will come along to share.

      Take Care
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        correction

        Chellebelle ~

        I meant to say "hopefully someone with steroid and Transverse Myelitis experience will come along to share."

        Also, I would definitely let your Neuro know about your symptoms (and don't worry, you won't look like an idiot). You know your body, and you know things are going on with it that don't seem right.

        Good luck to you.

        Take Care
        PPMS for 26 years (dx 1998)
        ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

        Comment


          #5
          Hi Chellebelle,

          I agree with KoKo, call your neuro! They can't help you (that's their job) if you don't call them, so don't ever worry about how you might look, OK? (Even if it's after business hours.) It's always better safe than sorry.

          Although I haven't had Transverse Myelitis, have had some of those side effects from Solumedrol. (Might be from the Solumedrol, but never had what you described happened last night.)

          Side effects of Solumedrol:

          http://www.drugs.com/sfx/solu-medrol-side-effects.html

          http://www.rxlist.com/solu-medrol-si...rug-center.htm

          Hope you feel better, soon!
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            Hi Chellebelle,
            My journey with MS began with a diagnosis of Transverse Myelitis following episodes of left upper extremity spasms, numbness and tingling on one side of my head. I was put on a 5 day course of IV Solumedrol and by day 3, I started into a steroid induced deep depression which I brought to my neurologist's attention. I didn't know that could happen and my then neurologist did and said nothing about this side effect and kept me on the steroids. I was told not to go on a disease modifying medication so I opted not to.
            My MS symptoms did go away with the steroids but there is no doubt the side effects are harsh. My steroid induced depression finally lifted 3 weeks later.
            I'm not a physician, but having an episode of foot weakness/numbness that led to your fall, which are different symptoms from your original ones, sounds like they could be MS symptoms and you should contact your neurologist immediately. It is important not to ignore these new symptoms(even if they go away) as they may lead to a new diagnosis.
            It wasn't until 2 years later that I had a second episode where my leg would go numb for a few minutes and then subside. I could feel it coming on so I had time to sit down until it passed so I didn't fall. This relapse led to my MS diagnosis and I started on medication.I wish I'd have started on an MS med 2 years earlier but hindsight is 20/20.

            Comment


              #7
              more side effects????

              OK so, I did talk to the neuro after that last incident. They brushed it off though and told me to call back if anything else happened.

              So I went on having more side effects these were the ones that people told me to expect though. Hair growth all over my face. pimples, which I have never had to deal with on this scale and horrible heartburn even when not eating or drinking anything.

              Last week though I started having really blurry vision. Still have it. When I try to look at the computer screen I have to keep moving my head or blinking to get anything to come into focus and even then it doesn't work quite right.

              I went for my scheduled check up with primary and I told him about the side effects that I was having and he was concerned about the vision issue. He called neuro. Neuro made me come in, and then basically blew me off again. Told me to go to Ophthalmologist. Even though I had just been there in April. So I went. She said that my Rx has changed a lot since April but she doesn't trust the change? and then she ordered a test to see the Optic nerve and a field teat because my peripheral vision is off. That is today.

              I just wish I knew what was going on. This is driving me crazy. The Neuro said I had no lesions and that the brain looked healthy so I know that this must be from the steroids but why won't they admit that? What else could it be from?

              Has anyone else had these type of issues?

              Comment


                #8
                Hi Chellebelle:

                I can tell how confused you are because you're making assumptions that aren't logical. So that's why things don't make sense.

                Originally posted by Chellebelle View Post
                The Neuro said I had no lesions and that the brain looked healthy so I know that this must be from the steroids but why won't they admit that? What else could it be from?
                With inflammatory conditions -- including MS -- relapses can happen pretty much any time. Even if you had a relapse a month ago and your MRI didn't show any brain or optic nerve lesions then, it doesn't mean you can't develop them now. So your assumption that a new onset of symptoms must be continuing side effects from the steroids is wrong. And that's why your doctors won't "admit" that -- it isn't true.

                Try thinking of it this way. If you saw your doctor on Wednesday and everything was good, and then you were hit by a bus on Thursday, would you wonder how you could be feeling so bad on Friday when you "just" saw the doctor on Wednesday?

                The steroids metabolized out of your body weeks ago. The can't come back and start causing new side effects.

                What else can your blurry vision be from? A new relapse, or maybe something else.

                A new relapse is like being hit by a bus the day after you saw the doctor. The bus isn't a side effect of steroids, and that's why your doctors have nothing to "admit" to. The task now is to find out what kind of bus might have hit you.

                Originally posted by Chellebelle View Post
                I went for my scheduled check up with primary and I told him about the side effects that I was having and he was concerned about the vision issue. He called neuro. Neuro made me come in, and then basically blew me off again. Told me to go to Ophthalmologist. Even though I had just been there in April.
                Neurologists aren't eye doctors. They aren't trained or equipped to examine eyes or diagnose or treat vision problems. Your neurologist didn't "blow you off" by telling you to see the ophthalmologist, any more than your primary blew you off by sending you to the neurologist. Your neurologist did absolutely the right thing by referring you to the proper specialist, the same way your primary did the right thing by calling your neurologist.

                Seeing an eye specialist is the right place for you to be right now for eye/vision issues.

                It sounds like your confusion is coming from assumptions that the situation should be going a different way. But an incorrect premise leads to an incorrect conclusion. And incorrect conclusions lead to more incorrect assumptions, all of which can drive a person crazy.

                Originally posted by Chellebelle View Post
                I just wish I knew what was going on. This is driving me crazy.
                You're so new to all of this that it's just not possible for you to have enough knowledge or experience to know all of what's going on. And there's a lot going on! You'll get more confident with more experience.

                You might be wondering why all of those other symptoms were steroid side effects and this one isn't. The nature and timing of the symptoms tell which is which. And you'll get better at knowing that with more experience.

                For now, remember that, in inflammatory conditions -- including MS -- any new onset of symptoms or significant worsening of existing symptoms could be a new relapse and should be acted on as if it is until proven otherwise.

                With new symptoms it's better to act sooner rather than later, and to see the specialist that's most appropriate for the issue.

                For any kind of eye or vision problem, the ophthalmologist is the doctor to call first. So it's good that you already have an ongoing relationship with an ophthalmologist. That can save you a lot of time and misery. For other symptoms you think are neurological, you should call your neurologist first. If it's outside the scope of neurology, the neurologist will refer you to the appropriate doctor, even if it's your primary. And remember that the neurologist isn't blowing you off to send you to the right place.

                Please let us know how your appointment with the ophthalmologist went and what the doctor said about your vision.

                Comment


                  #9
                  sorry just frustrated

                  jreagan- You are right. I am just frustrated and it is mostly because I do not like not being able to fix this. I have 4 children and I work, I have missed so much work due to all of this, Not only am I worried about eventually losing my job but this is financially hurting me. All of these tests, my insurance isn't the best.

                  I had my appointment for field test and OCT, the Dr said that my optical nerve looks fine. however she was concerned about the field test. She wants me to come back in a week and have another field test and if the same issues show up she wants the neuro to repeat MRI and look for something on the temporal lobe.

                  I am just a little lost in all of this I don't understand what is happening to me and I don't know if I should just quit going to the doctors and wait to see what happens. I really can not afford to keep having all these tests.

                  Thank you everyone for listening to me. And I am sorry for whining

                  Comment


                    #10
                    Originally posted by Chellebelle View Post
                    I have 4 children and I work, I have missed so much work due to all of this, Not only am I worried about eventually losing my job but this is financially hurting me.
                    It sounds like it's time for you to look into whether you qualify for the benefits of FMLA -- the Family and Medical Leave Act (http://www.dol.gov/whd/fmla/). For people who qualify, it allows for up to 12 weeks of unpaid time off to tend to, among other things, health conditions that require a person to be away from work. The time off can be taken incrementally to allow for medical appointments as well as longer stretches to recover from health problems.

                    FMLA leave is unpaid time off, but it's guaranteed time and it can protect against you losing your job. Your doctor has to certify that you have a need for medical leave, but the actual details don't have to be revealed to your employer. So read up on FMLA on the government website to see if you qualify, and download the form for your doctor to fill out. It can buy you some time while you figure out what's going on with your health.

                    Comment


                      #11
                      Hi Chellebelle

                      I have been on steroid treatment many times. I however have had very little side effects except for weight gain and insomnia . Steroids have tremendously helped me on the occasions I have had the infusions. When you talk about your foot not being under you as you went to run and you fell, I have had that happen in my early years of MS. I was diagnosed in 2001 after 4 years of testing and appointments. Now I watch and be aware of where me foot is at all times because that foot has been numb for 4 years. I don't think your symptoms of falling are from steroids. It takes many years to get a diagnosis for ms. It's unfortunate but there are many other probabilities that mimic MS. I know it's frustrating waiting to find out what's going on with yourself and sometimes you may feel like your going crazy. But hang in there. Keep a detailed journal. Take journal to doctors. Wish you luck and better health.

                      Tasha

                      Originally posted by Chellebelle View Post
                      I realize while reading this again it looks like I am saying what happened last night was the horrible side effects from the steroids. That was not my intention. I have been having side effects from day one. A whole myriad of side effects. I am just concerned about last night and whether I should just chalk it up to another in a long list of side effects, the other stuff seems obvious that they are side effects from the steroids.

                      example: burning eyes, hot flashes, horrible headaches, rash on head, swelling, rapid heart rate, just to name a few.

                      Comment


                        #12
                        A little update

                        Still don't know what is going on with my vision. I have seen the neuro again and he wants me to see a neuro-ophthalmologist but it is going to be a long wait to get into one. The closest is over an hour away.

                        Mean while the ophthalmologist wants me to come in tomorrow for a repeat field test. The only way I can focus even a little to see is to blink and when I do I feel that I am missing some of the lights that go off on the field test. The dr does not seem to be worried though. I guess I just do not understand how it is accurate if I am blinking like a mad person.

                        I wish I could find someone that has been through something similar with the vision issues. I do not know if they are connected or something completely different from original problem. If anyone can point me in the right direction I would appreciate it.

                        Comment


                          #13
                          Don't worry too much about the visual field test. You're not supposed to see every light, and part of the computer program includes not showing lights even when the machine is making sounds as a way of finding out if the person is really seeing the lights or is just pushing the button whether they see a light or not.

                          The computer program also takes into account that people do blink and miss the lights sometimes. It just retests the places that get missed. If you're concerned about blinking too much and missing too many lights, try to blink while you're pushing the button because the machine usually doesn't show lights during the time people are (or should be) pushing the button.

                          Another thing to consider is that, if blinking seems to clear your vision, your eyes might be a little dry (blinking spreads a fresh layer of tears each time). You might want to consider using some moisturizing eye drops four time a day (NOT the king that takes the red out) for a couple of weeks and see if that helps to keep your vision clearer longer. It might help, it might not, but it's a way to start ruling out other reasons that might be contributing to you clarity and focus.

                          If your ophthalmologist isn't incompetent, and if you're able to remember most of what your ophthalmologist says during an appointment, s/he should be able to give you a pretty good idea of what's going on with your vision.

                          "Vision issues" can mean a lot of different things, so it's hard for people to know if they're having issues similar to yours because we aren't able to know what yours are. But what ever's going on, I hope you get some more definite answers soon.

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