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Newly diagnosed and feeling green

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    Newly diagnosed and feeling green

    Hello all -

    I am new here, and writing this for myself and my wife. She has been recently diagnosed (at least clinically) with MS. At this stage we do not know which form she has, although a call from the doctor earlier today was not very inspiring. My wife had an MRI completely earlier this week which shows lesions in the thoracic lumbar area (I am assuming the spinal cord region). She also has shown lesions in the brain as well.

    The entire episode started with vision problems in mid-to-late August and progressively became worse in October. At this point everything is "black" or extremely dark for her visually. She is no longer working currently as she cannot drive or see well enough to do any work at all. Her walking has not been severely impaired however it is also starting to show at times, especially in the morning or when she is extremely fatigued.

    She has done oral steroids for her vision, the IV steroids as well and now the doctor is recommending the IVIG treatment to hopefully help with the ON. Because of insurance politics, we are having to do another round of the IV steroids until insurance can clear for the IVIG treatment which can take up to 2 weeks (possibly due to the holidays currently, at least that's what I tell myself so I don't get worked up over the bureaucracy of insurance). This time it will be for 5 days, but could also be delayed due to the holiday this weekend. I am hopeful it will not be delayed for the IV steroid. Who knows right?

    At any rate, we have an appointment in early January to see the neurologist, and will possibly seek a second opinion for treatment options. The complication with finding a suitable therapy is that my wife (Sue) is a liver transplant patient and already taking immune-suppressant medication (4 years now). The concern is that any treatment other than Copaxone can interfere or cause further complications. So now the neurologist is waiting to speak with the liver transplant doctor to determine the best option for therapy.

    The most frustrating thing is that there seems to be little that can be done medically right now other than a hurry-up and wait approach to everything. How frustratingly nerve-racking to get a diagnosis right before the holidays and receive little guidance or information on what the course of action will be. I feel like everyday spent "waiting" on something, MRI results, bloodwork results, treatment therapies (IVIG, IV steroids, etc) is a day lost to helping my wife. I rail against everything now in anger. I have watched my wife in the span of about 4 months go from vibrant and happy to a shell of herself dependent on people for the first time in her life. She tries to stay strong for me and I try to stay strong for her but it's reaching a breaking point with each day we wait.

    With the loss of her vision and the waiting I feel like the chances of her regaining her eyesight are lessening as a result. It's like a dark cloud is hovering right over us and no matter what we do it just gets darker and darker with the looming storm about to burst wide open.

    I told her in the interim let's focus on the things we can control, not the things we can't control (insurance, doctors, therapies, etc.). So we have decided to modify our diets from meat and dairy to plant based and healthier. We have started a mild stretching routine that helps her stretch her legs, back, and arms. The challenge is staying positive in the face of so many hurdles getting on the road to overcoming this initial attack. The neurologist said that this current situation is an attack that is aggressive and once we find the right therapy "hopefully" we will see an improvement.

    Sometimes I hate the internet (ironic since my day job is in IT!) because just researching MS can so mind-numbing and over-whelming but information is what I am after! I have been reading on therapies, diet, exercise, etc. I feel like I'm spinning my wheels with information that may not even be relevant to her situation, diagnosis, prognosis. Again frustrating.

    Well I have rambled on enough! I am at least thankful that forums such as this have gone extinct like the 8-track cassettes of yesteryear. I just needed to sound off for a minute without judgement. I am working on staying positive and looking for the path back to the rainbow!

    Blessings abound!
    LeprechaunLuck

    #2
    I don´t have experience with ON so I leave that to others to help you out. I do go to an opthamologist who does an OCT scan that checks the myelin on the optic nerve. The machinery takes a photo and then you have a baseline for going forward. I would check out George Jelinek´s website and the beauty of it is that he has done so much of the research that you can find most of what you are looking for there and now he has an OMS cookbook. If you have not explored meditation, I highly recommend it- meditation turns off inflammatory genes and turns on genes that promote healing. The anxiety of the diagnosis is reason alone to meditate. Breath work will help immensely- google the relaxation response (credited to Herbert Benson, but taken from eastern cultures) and you can learn it in about 2 minutes. I too am a googler and scared myself silly initially. For me, knowing the worst case scenario was part of the process of accepting the diagnosis. It is a process and you will start to google research that is encouraging instead of horror stories. Check out the blog at Barts in London- great research blog with interesting comments.

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      #3
      I just wanted to thank you on behalf of your wife. I think it is fantastic all the things you are doing to educate yourself in support of her, despite the unease it brings on yourself. I also think it is wonderful that you are making changes along with her.

      MS forces you to go thru all the stages of grief, and sometimes cycle thru them again with changes.

      Your anger is understandable. One thought - it may be helpful for both of you to see a therapist both alone and as a couple. For me, therapy was a safe outlet to let out my fears, my anger, and other emotions. And provided strategies to handle the stress and anxieties MS brings.

      So glad your wife has a loving and supportive spouse.
      Kathy
      DX 01/06, currently on Tysabri

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