A New Phase


My new neurologist doesn’t think I have MS!  Most of the tests run on me don’t indicate MS, and I agree with the dr., based solely on test results, it doesn’t look definitively like MS.  She is so unsure about the diagnosis, she took me off the new MS drug I started when I began seeing her, and wants to talk to my previous doctors and see what it is she may be missing.  She knows I was receiving care from UCLA and their level of expertise, so she hasn’t been rash enough to do more than run a whole battery of new tests and question the diagnosis.  But she admits she can’t see empirical evidence of disease.

She’s run nerve conduction tests and she doesn’t see any disease.  She’s tested for ocular nerve damage, and sees none.  She sees nothing significant in the MRIs done of my head and neck.  She doesn’t believe the ‘lesions’ in my brain are caused by MS, not big enough or bright enough for her expertise.  She even ordered an MRI of my lower back, which has never been done.  Just to see if there is a spinal issue that might explain my leg weakness.  She is convinced that the hand pain and weakness in my arms is due to the disc damage and stenosis in my neck.

What I can’t figure out is if she doesn’t think it’s MS, what is the problem?  Simply age-related spinal damage?  No one in my family ever suffered from spinal issues.  And I’ve had the other MS-like symptoms: the trouble walking, the pain in my head and neck, dizzy spells.  The overwhelming fatigue?  I see her the end of the month to discuss the latest MRI and what she decided after talking with my previous neurologist.  I’m pretty curious to see what she’s decided.

I’ve recently joined that select group of people who are in daily pain.  I seem to have developed chronic back pain.  For the last few months my back has often been in spasm, and it’s only getting worse.  For the past couple of weeks the pain begins to hurt as soon as I get up in the morning and the only relief I get is when I lie down.  This is really stopping me from doing things, like riding in a car, walking on the beach.  I can still do most things, but for much shorter periods of time. I am trying to keep up with yoga but so far, not much serious relief from the back ache.  I’m hopeful.

The biggest issue with the chronic pain, is trying to cope with Husband’s decreasing mobility caused by arthritis in his knees.  They haven’t been too bad in the few years since he was told about it.  He was getting steroids injected every six months or so, but can only delay the inevitable surgery.  I don’t have arthritis (that I know of), but I know it is very painful, and between my back and his knee, we’ve barely been getting out of the house.  Though we got a little stir crazy this week, and worked in the garden the past two days.  Husband sees the doc next week and discuss the first step in having knee replacement surgery.  Of course, the big concern is mobility afterward.  We live on the second floor and there is no elevator.  I don’t know how difficult those will be, or if stairs will be completely off limits for a period of time.  It’d be tough for him to just get upstairs and not be able to leave the house for 6 months.  We are not looking forward to it.

I’ve said it before, getting old is a bitch, but it beats the alternative.

9 thoughts on “A New Phase

    1. Thank you. How very nice of you. I hope I didn’t seem whiny, I was just confronting the facts. Everyone has something to deal with. Sharing it here though has a therapeutic value.

    1. I’m in pain, but I’m happy to accomplish whatever I am able each day. I will not give in to depression or self pity. It seems to help me accept these changes when I blog about it. I know I will get the support that helps me keep going.

  1. I think the MS symptoms change over the years.. with some they get worse and some better. But it’s interesting that the new dr. is dubious of you even having it. Did you at any time have a spinal tap?
    I know that the plaques in the brain get confusing as we get older and they often don’t know which are related to MS and which just because of getting older.

    Anyway, hopefully you’ll get some answers as to your symptoms and pain regardless of ‘what’ it is.

    I had both knees replaced but a year apart. I wouldn’t recommend both at the same time. As long as I did the exercises after surgery, the healing was great. The stairs might be a problem for a while at least. I know you don’t have a lot of money, but I was just thinking if there would be any assistance given to put a ‘temporary chair lift’ on the stairs…. just a thought

    Anyway, take care… Diane xx

  2. Hopeful and discouraging information all at once! I would react the same as you: if it isn’t MS, that’s wonderful. But….what the heck is going on to cause all these symptoms? Your positive spirit shines through. I know you have been frustrated for so long, and pain makes everything harder. ❤

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