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I also have a question for diagnosed MS'ers
If you've been reading my posts you can see how I have been self diagnosing. I suppose I should call my neuro but I hate to bother him. OK, So far every symptom I've read I've managed to connect to me.
1) Do you have constant headaches? 2) do you have diplopia in any way? I used to have it on the extreme right but I've had that since my craniotomy when they daamaged a nerve. However now I also have it when I look up. 3) Do you just ache all the time? I'm sure I'll have more as the day goes on. Thanks |
I am not a fan of self dx so in terms of sharing mutual symptoms, it just allows for more mistakes than results.
I had MRI's and an LP, all came back that I have MS. Just to help you, I take no DMD's and no medications to relieve my sx's because no pharma drug does enough to rationalize the side effects/body harm/cost. I have tried "them all" at one point or another. I love San Diego, I would recommend you get a zoo membership and enjoy the moment at the amazing Balboa Park. Hanging out at the hippo area was my favorite last time I was there.:) |
Never a headache, no diploma - but very PPMS. So is Aarcyn. Please do not self-DX. Find a doctor you can work with, work as a team on this stuff. Some of them doctors are pretty smart and kind of nice (Mine is kind of cute, but really does that matter?). Took me 5 tries,before liking my current one. No, he can't really cure or help me (I see he knows that too and I like that) , but I knew that going in. Everyone is so different from another, don't try to listen to others to look at yourself.
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I agree with cyn. Self dx'ing can be a dangerous thing. It can put all kinds of things in your mind. You could connect yourself to almost any illness. Look up pain in head, and you'll connect with anything from a typical headache to a brain anuerysom (sp?). Look up sore toe and you get anything from hang nail to gangriene. You have a pcp and a neuro? Keep a log of whats going on with you symptom wise. Many things mimic MS. Over 100 things mimic it, so it can be a long drown out process of illimination. Some folks take years for a dx, and others it comes right away. Do yourself a favor and stay away from self dx'ing. You could be doing yourself more harm than good. :hug:
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In my case I have had a firm diagnosis, unfirmed, reaffirmed, modified, etc. Various doctors have had various opinions. After I was convinced that my only real disease was Porphyria (also dx'd by 3 doctors), a doctor at UW hospital in Seattle told me I didn't have Porphyria, I had MS.
So what do you do with THAT? It was over 25 years ago that I first got an MS dx, and all this has gone on since then, so I figure it is absolutely no use trying to get doctors to come up with the REAL SCORE. I have to live as if I have Porphyria whether or not I have it; I have to cope with symptoms which are MSy whether or not I have it. I have never been able to take the MS drugs, so that is irrelevant; my only MS therapy has been the Swank Diet for over 25 years, slightly modified to add an egg a day. It's all somewhat irrelevant, as I now have a form of non-malignant cancer (I know, try that DX on for size) which means I have to get radiated when my platelets go over 800 (I have only had one radiation so far, at Mayo Scottsdale). I have to have a phlebotomy every six or seven weeks to keep hematocrit below 42. This disease is called Polycythemia Vera, and there is NO doubt that I have it. Absolutely NO doctor would say I didn't have it. Or am I just having false confidence, and there IS a doctor lurking who would remove this diagnosis? |
When I taught Emotionally Disturbed students, many had secondary classifications of LI (Learning Impaired) DDHD (Distraction Deficient with Hyperactvity Disoder(?)), NI (Neurologically Impaired) and so on and so on. Our boss always told us to forget names, causes and stuff and to concentrate on problems we could work with by use of behavior modification, meds or whatever strategies might work.
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AAARRRGGHH. ADHD - Attention Defiecit/Hyper Activity Disorder
(it's the MS that causes these mistakies I tell you!:D) I read DDHD stands for Doo Doo Head Dummy. |
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I did not answer SDFencer in my last post. No, I do not have headaches at all. I did have diplopia for 8 years, it was the symptom which finally caused testing with MRI and VER and got me an MS dx. Yes, I have had periods where I ached all over, but I'm not so bad now as I was then--it was demerol level much of the time. I had to take demerol because I reacted badly to many other pain drugs, muscle relaxers, and even Elavil given off label for pain, which caused temporary paralysis, which was probably due to Porphyria, the second dx I got some years after the MS dx.
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Oh, we have been members forever. I actually serve on the ACCESS committee there. (making sure ADA is followed and training members) My son is a graduate in Animal Science from UC Davis and works for the Safari Park (formerly the Wild Animal Park)
It's not like I am fishing for an LP. I did not care for it and I always seem to end up on the wrong end of the needle. |
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