Easing back into my life

[goatgal]

Once again, I was greatly disappointed with a neurologist who purports to specialize in MS. When I moved across the country, I left a very good neurologist at USC, but felt reassured by her recommendation of a specialist near my new location. Sadly, he was on his way out the door, taking a new job with the FDA in Washington. I saw the doctor who took his place but he moved to general neurology and no longer sees MS patients. Now, in this revolving door so-called clinic, the most recent neuro saw me, didn't show much interest in what I was trying to communicate, didn't see me walk (or time my walk) or check my reflexes, or address what I told her about lack of sensation in my feet or...or...or.... She didn't respond to my concern about a slow steady decline in my abilities. She asked if I had had any relapses, I said no, none that meet the criteria, and that was it. According to her, I am still relapsing/remitting even though my strongest exacerbation was decades before I was diagnosed, and yet, I slowly lose ground. I left, my anger rising. I've now seen five different neurologists in central Virginia and two in southern California, and only one has shown an interest in my problems...the others seem to communicate that because of my age, my complaints are trivial. A sort of "what do you expect? you are old" ...and I feel dismissed, diminished, and alienated. Fortunately, by the next time I am scheduled at the so-called MS clinic, I will have let got of my anger or there may be a new neurologist in place.

Now, as for my still-healing ankle: the incision is finally closing though I still must apply wound care get and bandage daily. The edema is still problematic but somewhat helped by a compression stocking. There is still constant low level pain at the site, and sometimes pain that is localized elsewhere on the shin. I suppose the latter pain is reflected somehow from the site of the injury. I do notice that the right ankle remains weaker than the other, with a tendency to briefly weaken when I have been walking and moving about for several hours outside. I suppose this may continue for a long time yet since the last xrays showed the bone not quite filled in around the screws holding everything in place. But all in all, the ankle is finally coming back but I still don't know if I will every walk without a limp again. If that turns out to be the case, I will start signing myself "gimpy."

[Morllyn]

When I went to my first MS specialist, in 2016, he acted as though my case wasn’t interesting or lucrative enough, since my body and mind weren’t devastated by it.

[goatgal in reply to Morllyn]

That's my feeling as well. I've been thinking about this since I saw her last week. My next appointment is in a year, and since she has no baseline after a cursory conversation, she will have no idea of whether or not I am declining. I do understand that my MS has not affected me in the same debilitating way it has affected others; I do understand that I am nearing the end of my days; I have no wish to distract from the needs of a young person with MS whose whole life lies ahead. But, I still feel as if my symptoms at least merit discussion.

[Morllyn in reply to goatgal]

Exactly how I feel.

[greaterexp]

I'm sorry. You've been through so much already, and it's a real shame to add feelings of being dismissed on top of it all. I hope and pray that your next visit is more rewarding. If you write a list of symptoms, be sure to include "feeling dismissed" as one of them!

You've made remarkable progress, though it must seems like it's taken forever. You're amazing!

[goatgal in reply to greaterexp]

Thank you for your kind words. It would have been even more amazing if you had seen me last night, moving around like a stalk, snapped at the waist. I had worked several hours outside, picking up fallen branches after two days of very strong winds, feeling lucky that no trees had fallen as several people in my region were killed by falling trees. I came in, did my few household chores, checked for ticks (yes, it is already that time of year), found two, removed them, fixed my supper, sat down to eat it...and when I went to take my plate to the sink was hit by an excruciating spasm across my right lower back and flank when I tried to straighten up. Whenever I had to move last night as I got ready for bed, I had to remain seated or walk at bent at a right angle. Today I am fine again, but though there are still branches to pick up, I think I won't. They can just lie there! I suspect that some muscles were complaining about being called back into action after so many months sitting while my ankle healed enough to bear weight. I intend to take it easy today, just set out a few seedlings into the vegetable bed and water them in. I need to let those muscles know who is in charge!!!

[RoseySawyer]

What state are you in? ❤🌷

[goatgal]

I live in central Virginia. We had wild weather alerts and a tornado warning.

[IFwczs]

Keep looking for a new doctor! They are out there, just almost impossible to find. National MS Society has a good database, have you reached out to them?