Discussion in 'Other Symptoms' started by Sasha, Nov 18, 2017.
@dannybex and @Sid
Did you know what your B12 levels before you started supplementing?
They were tested and were in the low end of the normal range and the doctor I'm seeing wants to shove them up a bit.
Mine were low end of normal range, just under 300. GP of course dismissed it as “normal” but I was alarmed given how many symptoms of B12 deficiency I had so I began supplementing immediately.
No, it's been awhile since I had them tested, although I believe the last time they were within normal range. But as Rich Vank used to say, I could still be functionally deficient, and after reading several case histories where patients were misdiagnosed for years with things like MS, when all along their symptoms were a result of B12 deficiency, I decided to give it another go, and it has definitely helped.
The woman sticking up for the man with Parkinson's is that friend/partner that we all wish we had. OK, maybe not the exact language, but the idea that we can speak up loudly and forcefully.
For decades I tried to go to my doctor's visits on my own, explain symptoms in a well organized way to my doctors, and I was still dismissed. I found that taking my husband with me, while I'm the one who has done all the research and who has direct insight into my symptoms, the older doctors often then turned to my husband and asked "is this what you see too?" or "is this what you believe?"
OMG - just speak to me. I remember buying my first car with my own earned money. The car salesman kept turning to my then boyfriend and asking him "What color car would she like?" "What do you think about tinted windows?". I wish I had a little of the woman in the video within me back then or within my boyfriend. Instead, I just threw up my hands and walked away in disgust.
5 years ago, prior to our MitoD diagnosis, a well known New York City neurologist at a top University Hospital again told my husband and I that my fatigue and other odd symptoms was the result of stress. I had a meltdown on the way home in the car, over the "stress diagnosis". My husband did see a mighty meltdown followed by not talking to him for an hour because I dearly wished he would have stood up for me against the "it's all due to "stress diagnosis" and been a little like the woman in the video. He said, calling the doc on it and going off on him wouldn't have helped anything. He's right, but I needed to release that steam. The woman in the video was in my head during that doctors appointment shouting similar things at hearing "it's just due to stress".
I have to take my husband with me to doctor appointments too. It makes me so angry that it is required. In my case it makes little or no difference to the medical treatment I get (or don't get), but it does at least keep them polite.
I would welcome exactly that language. Wouldn't that be grand...
The video is great, thanks @Valentijn! I think it speaks perfectly what it often feels like with this illness.
And thank you all for talking about your experiences. Very interesting, very helpful.
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