I am still experiencing a symptom flare / relapse and so I decided to bite the bullet and call my Neurologist's secretary and ask for an appointment. For those of you that don't know, the last time I saw him was on April 12, 2012. He ordered more blood work, MRI's (both brain and spine, with and without contrast) plus a CT scan of my chest.
I have been waiting (probably stupidly and overly patient) for a follow up appointment. I didn't push for it because a) I am too passive and b) my symptoms had subsided and I was getting my life back. I was back at the gym, doubling up on classes and feeling quite well, not perfect but nowhere near how I was earlier in the year.
As I said in my last post, the ugly monster has reared it's head and my symptoms have all come back with a vengeance. I called the secretary and explained my situation. She told me that my Neurologist couldn't see me until NEXT YEAR. What??? Apparently he is the hospital attending for the next month and so he is only running one clinic a week. I asked if I could see another Neuro - answer? No.
I then asked if I went back to my GP and asked to be referred to a different Neuro would that work? She replied (quite rightly) that this would take longer. I asked her what the heck I was supposed to do? Apparently, there isn't much I can do. She said she would talk to him and see if she could "add me on" to one of his clinics and she would call me back. She didn't call me back. No big surprise there, it has happened before.
It isn't like I expect him to DO anything but the last time I saw him he said he couldn't give me an official diagnosis until I had experience two very separate "flares" of symptoms, which now has happened (along with my brain MRI that is abnormal).
I said to the secretary that friends tell me to call my MS nurse but of course I don't have one because (and she finished my sentence here) "I don't have an official diagnosis yet". You don't get an MS nurse for "probable MS". I have had people tell me to call the MS Society or other places but it is hard to explain how I feel about this.
I have the abnormal brain scan, I have the symptoms, I have the body that if it gets hot starts twitching (visibly) but without that rubber stamp of a diagnosis I feel like a fraud, a fake, a hypo. For any of you that were maybe left in limbo, you may understand this feeling. I don't feel like I have the right to call these places.
I did go to the gym on Sunday to do a Yoga class. I was in down dog position and my right hand was spasming uncontrollably. I was looking at it shaking and willing it to stop, which of course it wouldn't. I was upside down, choking on tears of frustration that I have no control over my body.
In the real world you have control dont you?
If you get fat you can control what you eat, up your exercise and lose weight. If you are tired because you stay up all night watching movies then you can choose to go to bed earlier and get more sleep. If you have a headache you can take a pill and it goes away. With a chronic illness you are not in control of your own body and it is frustrating and so hard to explain to people who are well.
Speaking of people who are well, I posted something about how I was feeling on Facebook recently and there were some family members and so-called friends who didn't even respond. I commented to a friend who has MS how hurtful it is and he quite rightly stated that when you get a chronic illness your world tends to shrink. I have found this to be a sad and true reality.
On a brighter note, I managed Yoga on Sunday and yesterday I went to "Body Balance", which combines Pilates and Yoga and I did very well in that class. I have had to stop step classes (I would fall on my arse if I tried that one) and there will be no wiggling in Zumba probably for a while but I will keep going as much as I can with the classes I can manage. They make me feel positive and I need that right now, more than ever.
I did explain to my Step instructor that I won't be in her class for a while as I am having a relapse to which she replied "but you were fine last week". I patiently explained that yes, I was fine last week but sadly this is the nature of the beast. One minute you are living your life and then the next you can be knocked sideways.
So enough about me, how are YOU?
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