New CH.com Forum | |
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl
Daily Chat >> General Posts >> Self diagnosis.... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1477373143 Message started by jon019 on Oct 25th, 2016 at 1:25am |
Title: Re: Self diagnosis.... Post by maz on Oct 25th, 2016 at 1:05pm
I have to say I self diagnosed, after I had found this site by sheer chance. I had alread seen so many doctors and had so many procedures, and so many diferent diagnoses, I was in dispair. I knew none of the diagnoses was correct, because none of the treatments had worked.
Then I asked to be referred to a neuro, who said it can't be CH because I'm a woman. By this time I had spent many hours here, and I was almost certain it was CH. Finally, I saw a different neuro who confirmed it. And it must be correct, because the meds work. But I would still be floundering in the dark if I had not pointed them in the right direction in the first place. Sometimes, when no one is helping you, you have to help yourself. |
Title: Re: Self diagnosis.... Post by jon019 on Oct 25th, 2016 at 6:39pm maz wrote on Oct 25th, 2016 at 1:05pm:
...absolutely maz....I know ya knew...just like the 8 docs I saw before finding one who did DIDN'T... so I'm saying learn EVERYTHING you can so as to advocate for yourself...aint nobody gonna do it for you.....lead the doc by the nose if ya hafta...but get that "official" diagnosis... ...personally I was always a little annoyed by the standard reply here.....for years now...about the dangers of self-diagnosis...CUZ I KNEW MORE THAN MOST DOCS re CH...most of us do...UNTIL: I was presented with a symptomology by a friend re HIS friend that was TEXTBOOK CH...and I said that is what it SEEMS to be...but get thee to a neurologist first before you self treat (I refrained from discussing O2, caffeine, meds, etc) to rule out other possible etiologies. ch.com literally saved that man's life...because of the caution I learned here. He went to a neuro ...got an MRI or CT scan....and they found a brain tumor, operated immediately and he's fine...if he had delayed to try ch treatment measures...he'd be dead.............. Best Jon |
Title: Re: Self diagnosis.... Post by Mike NZ on Oct 26th, 2016 at 1:59am
Whilst most people who come here with CH symptoms do have CH, over the last few years I remember a few who had other issues despite having "textbook" CH symptoms including:
Caution has probably saved a few people their life. |
Title: Re: Self diagnosis.... Post by Linda_Howell on Nov 5th, 2016 at 8:49pm Jon, I agree with you in principal. However: Before I found this site in 1998, I'd already had 12 years of this pain. I DID diagnosis myself with CH. BUT...then I took what I already knew to the best specialist Dr. Lee Kudrow in So. Calif. who took sonograms, many, many tests and then came back with what I already knew. It's o.k. to diagnosis oneself as long as you have a doctor to verify it with MRI, CAT scans as well as a very good work-up. Love ya Jon. |
Title: Re: Self diagnosis.... Post by AussieBrian on Nov 5th, 2016 at 10:04pm Mike NZ wrote on Oct 26th, 2016 at 1:59am:
Have to agree with you, Mike. My symptoms are so close to classic CH it was years and years before I realised I was also sufferering another cluster-LIKE syndrome as well. Diagnosed it myself, two neurologists have confirmed it, and life is so much easier now. |
Title: Re: Self diagnosis.... Post by Hoppy on Nov 6th, 2016 at 12:10am
And that's why its always in your best interest to seek out a Headache Specialist for a confirmed diagnosis!
Hoppy |
Title: Re: Self diagnosis.... Post by jon019 on Nov 6th, 2016 at 3:54am
......abide..................
|
Title: Re: Self diagnosis.... Post by purpleydog on Nov 11th, 2016 at 1:40pm
Hey Jon,
I agree that it's extremely important to get a diagnosis from a doc or preferably a good neuro. But I think another important thing is to not SELF TREAT. I already had a great neuro from dealing with other headache issues, and he thought I had CH before I did. When I finally went in with my symptoms, he agreed, and he treated me. Also, I would bring him treatments others had tried here on CH.com that worked, and he wrote me a script as needed after doing some quick research (thanks E-Double ;) ). I recently went in due to complications that were happening while getting hit, and he had to do a complete full exam and imaging studies on me. Turns out I had another unrelated to CH issue, but very important that it got caught. With all the information and dis-information on the internet, especially now, it's more important than ever to see a neuro for a correct headache dx. It's easy to get information from different websites, I've even looked at webmd and found incorrect info. It's easy to just take the info from one or two places, but we need to do more research than that. Please be careful. |
Title: Re: Self diagnosis.... Post by Prarnethir on Nov 19th, 2016 at 1:22pm
regarding this part:
"Hey Jon I agree that it's extremely important to get a diagnosis from a doc or preferably a good neuro. But I think another important thing is to not SELF TREAT. " I do agree with this. sometimes self diagnosing and self treatment can be good and then everything's fine. but the thing is that even when you go to a doctor you can't be 100% sure that they would give you 100% sure diagnose and 100% good treatment (since you and the doc. are both humans which means that it might be hard sometimes). the point being that you stand much more chances to get both of them correctly if you go to a doctor. and sometimes... when you misdiagnose yourself or take wrong drugs it can end up quite badly... So I agree with others saying that you need to see a doctor.. |
New CH.com Forum » Powered by YaBB 2.4! YaBB © 2000-2009. All Rights Reserved. |