One year is closing and another beginning, so I am making a list of my gratitudes. Top on this list is my most recent neurologist. She is relatively young (when you are my age, someone in her 30s seems practically newborn), warm, and empathetic. On our first encounter, much to my amazement, I burst into tears and told her I was angry at how MS prevents me from doing what I want to do. My outburst was momentary but real...and so was she.
When I was diagnosed, the first neurologist delivered the news over the phone. When sat down for my first post diagnosis appointment, she said that my age made it likely that drugs would be ineffective. I asked her what I could do to stem the progression. I thought she might mention acupuncture, yoga, meditation...but she talked about a lemon juice/peanut butter fast, a magic crystal, and a hocus pocus footbath to remove toxins, none of which seemed very appropriate. I never went back.
The second neurologist conveyed profound disinterest. She checked my reflexes and strength, had my eyes track her finger, and suggested baclofen for nighttime leg cramps. She seemed unable to hear my concerns about taking baclofen in my situation: I lived alone on my dream farm, caring for dairy goats and hens, growing produce organically. I had to be strong and capable everyday: how would a drug affect this?
My third neurologist was dismissive of my concerns. At this point, I was three years into the diagnosis, had surrender the dream of a farm, and had used the internet to find out more about MS. You will have to take my word for this, but I am not a complainer. I could, of course, list all the little things that bother me: the inability to type as well as I once could, my deteriorating cursive, the loss of ability to play the piano...and those are just my hands and fingers. Then there are the eyes, the feet, the joints that suddenly weaken...you have MS, you know. But she asked a question. And I answered. I told her I thought I was walking like Frankenstein...and she said I was lucky because her young male patients had it much worse.
Here, I want to say that I understand my blessings. I have empathy for others...for those diagnosed with MS, with cancer, for those who are hungry, or homeless, or in pain, and...and...and... Within my abilities, I always act with respect or help for my fellow humans. In addition, I am not stupid. I know MS can rob someone of every function we take for granted. I also know that medical practices have to keep a schedule and limit appointments to a certain period. But all I wanted was someone to listen to me, not for long, just for a moment.
Now, almost seven years after diagnosis, and so much solo work trying to figure this out, I have a fourth neurologist and this online community of fellow humans to understand how I feel. I have felt so alone, so isolated, sometimes so crazy, often so judged...but here, I feel accepted, understood, listened to. Thank you. I didn't know how much I needed you. I am grateful for you.
Written by
goatgal
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It's so wonderful to have folks who can truly empathize with us, isn't it? Even knowing that no one can really fix anything, it still helps to vent a bit here.
goatgal that was beautifully said 😊 but truly understand that it's All of YOU that make this place so special!!
Jes🌠
I wear your pain, meaning I understand so completely especially the part saying the judgment (misjudgment really) disinterest, etc., by my own Neurologist for God's sake, what in the world is with that???!!! I am currently, desperately, looking for a new Neuro, one preferably with MS background. I wish us both a better 2017.
I am currently looking for a new neurologist as the current one I have does not do anything!! Just wants to tell me what's new with MS!! Worse than the previous one I had!!
I any of you live in the Portland, Oregon area I have a great neuro I can tell you about.
The first neuro I saw right after I was diagnosed told me I had three choices... 1) I could do nothing 2) I could get on anti-depressants 3) I could find a counselor to talk to.
Otherwise there was nothing he could do for me and I should come back and see him in two years. And this was after waiting 3 hours past my appointment time just to see him.
Needless to say, I walked out and never went back. My doctor referred to the neuro I have now and she's wonderful. She put me on Copaxone and sees me every three months unless I have something going on and the I just make an appointment to see her.
Thanks Brenda. I am in Jackson, MI. This is my second neuro since I moved her almost 5 years ago. The first one moved to the East coast, just as I was going to be asking my family doctor for a referral to someone else.
That was beautiful goatgal (I have dairy goats too 😉)
I feel like every time I go in I want to start with "I swear I've never been a complainer" BUT.....If only a I had my long time doctor instead of neurologists who never knew me. My old doctor passed away a few years ago. When I was really frustrated by my care a few months ago I actually cried I missed him so much.
cheshcat, bxrmom, Blcasey279, lindance, jesmcd2, greaterexp, Tutu, erash To all of you who posted replies, Thank you! This forum is truly a gift, connecting MS warriors all over the map, allowing us to speak, be heard, and responded to.
Every once in a while I have read a book or a blog post written by someone with MS who describes a great relationship with his or her neurologist...and every time I have thought, "Oh, if only I lived there" or "I guess I've just had bad luck"...but your responses reassure me.
Empathetic doctors who have the inclination, personality, experience or training to be good listeners (whether they are neurologists or not) would be immensely appreciated by this community. Many of us (including me) might have been diagnosed earlier, and perhaps helped sooner, if ONLY someone had listened when we said things like...somehow, I forgot how to swallow, or things keep slipping from my grasp, or all of a sudden my vision went blurry and it became hard to hear, or my feet feel odd, and...and...and. Instead we were told that no one needs to remember how to swallow, or just hold on more tightly, or pay attention to where you are going, or it must have been your imagination, or that nothing was wrong.
And I don't know about you, but I knew people who were criticized as hypochondriacs or attention seekers and I didn't want to be diminished in that way, so I tried very hard not to focus on the odd feelings, telling people I was klutzy and clumsy and uncoordinated...and like you, I knew something was not right, but like you, I went on, wanted to be strong and brave (and we are, we are) but somehow, this new year, let's all continue to listen carefully to one another. Let's speak out together to help our doctors hear us. Thank you all for listening to me.
I honestly feel that no gets what's going on with me but the people here. And it helps me understand what's happening also. I don't feel so alone. The best part is it's actually made me more open with my boyfriend about what's happening. We definitely have something very special here!
And it's because of all of you! Without you it doesn't happen! 💝
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