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Topic: CH and Optic Neuritis (or MS?) (Read 1623 times) |
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dezzer_18
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CH and Optic Neuritis (or MS?)
« on: Oct 19th, 2007, 6:58pm » |
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I'm new to the family so here's my wife's story with a specific question. The neurologist today told my wife she is suffering from cluster headaches. This is not new since she was told the same thing about 5 years ago, but the head pains are much more serious this time. Looking around the site, I believe cluster headaches is an accurate DX this time.
However, this is only the end of a very long road. Two year ago (around Christmas) my wife suffered a bout of optic neuritis (sudden unexplained swelling of the optic nerve). She took steroids, had MRI's and spinal tap. They said she may have MS but it would be years before they could say for sure. A year later, she had another episode of optic neuritis, this time in the other eye. Again the same meds, tests, and Dx. In the meantime, she suffered constant muscle and joint pains, chronic fatigue, and mild headaches (nothing like CH). The worst thing was if she over exherted herself (and by this I mean simply working an 8 hour shift at a coffee shop), she would suffer for 2 days with nausea, vommitting, IB, and other "flu like" syptoms  .
The neurologist sent us to the reuhmetologist who sent us back and around we went on the medical (not so) merry-go-round. ABout 10 months ago, we learned that we were expecting our first child and my wife was blessed with 9 months good health, best I had seen her in 2 years. After his birth, she was fine for about 2 weeks before suddenly being hit by the now defined cluster headaches. The pains have been continuing fairly constantly for the last 3 - 4 weeks but they don't quite come like "clock work" as many people have described. She gets about 3 or 4 a day and they tend to occur more often at night.
THE QUESTION: Does anyone else know of or experienced CH w/ Optic Neuritis as a precursor (or MS or other autoimmune)? I am trying to figure out if all of this has been CH, it something else that looks like CH, or worst of all, she is suffering from CH and something else.
Thank you for any help you can provide, this site really has been a blessing of answers and guidance.
D
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Jonny
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Re: CH and Optic Neuritis (or MS?)
« Reply #1 on: Oct 19th, 2007, 7:20pm » |
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Sorry bro, ive been reading this board for eight years and never read about symptoms like that with CH.
But then again, nobody can read every single post that is posted, even me......so keep checking back, someone might have some insight on this.
Welcome to you and your wife to your new family!
................................Jonny
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Sean_C
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Re: CH and Optic Neuritis (or MS?)
« Reply #2 on: Oct 19th, 2007, 7:38pm » |
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Having CH and auto-immune is more than likely common, however thier not obviously the same. Auto-immune has many many symptoms that a very large part of the population in the world can have one or more easily.
They should be treating your wife for her CH as well as her other symptoms. Talk to her Rhuemy and a great Nuero in your area, hopefully they can get both under control.
Congtrats on your new born.
Cheers,
Sean..............................
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| « Last Edit: Oct 19th, 2007, 7:41pm by Sean_C » |
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Linda_Howell
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Re: CH and Optic Neuritis (or MS?)
« Reply #3 on: Oct 19th, 2007, 7:44pm » |
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Dezzler,
I feel so badly for you and your wife. You seem to be a wonderful man in that you are looking for answers for her and I cannot tell you how many women you have impressed by this.
I too, have never heard of what you describe as it relates to CH. However... Quote:| but they don't quite come like "clock work" as many people have described. |
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I have been chronic for 21 years now and never one day has gone by when my HA's have followed a clock-work pattern. They come when they come and I can never be sure. So do not think that we all have this pattern because we do not.
My totally un-medical, I- don't -know- what- I -am- talking- about- because- I -never- recieved- an- MD degree-opinion? She has CH AND another condition.
(hope that is enough of a disclaimer for some of you that would jump on me, and you know who you are)
How are you doing on the Insurance aspect of this? Can she afford to go get another opinion? See another specialist in those specific areas that do not appear to be CH rel;ated?
Pul-ease keep us informed as to what you find out. We care and we will help any way we can as far as the CH is concerned. Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Kevin_M
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Re: CH and Optic Neuritis (or MS?)
« Reply #4 on: Oct 19th, 2007, 7:49pm » |
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Echoing Sean about a helping doc for the CH is a good idea, and like Jonny, the other symptoms haven't been mentioned here for CH.
Two MRI's. If I recall, for MS, the doc would be able to show you lesions if that was true. They seem to be suspecting but no positive MRI yet.
But we are no doctors.
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Jonny
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Re: CH and Optic Neuritis (or MS?)
« Reply #5 on: Oct 19th, 2007, 9:23pm » |
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on Oct 19th, 2007, 7:44pm, Linda_Howell wrote:| (hope that is enough of a disclaimer for some of you that would jump on me, and you know who you are) |
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As soon as they land on you Linda my boot will be wedged in their ass, thats a whole new kinda pain with the size of my boot, honey! 
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Linda_Howell
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Hearing is one thing. Listening is another.
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Re: CH and Optic Neuritis (or MS?)
« Reply #6 on: Oct 19th, 2007, 9:35pm » |
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TY jonny.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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starlight
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Re: CH and Optic Neuritis (or MS?)
« Reply #7 on: Oct 19th, 2007, 9:38pm » |
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Dezzer,
I just googled and it seems that the older your wife is the less likely the optic neuritis is related to MS. Over 50--not likely.
You sound like a very caring man. I hope that your wife will be OK.
Star
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dezzer_18
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Re: CH and Optic Neuritis (or MS?)
« Reply #8 on: Oct 20th, 2007, 10:46pm » |
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Thank you everyone for all your help and thoughts. It sounds like what I suspected, that the CH and other symptoms are separate issues. However, I can't help but wonder how they might be related. I will definitely let you all know what we learn in the coming months.
We are waiting to schedule a third MRI and we will see what that shows. To this point, there have only been minor lesions on one MRI and only small indicators of autoimmune disorders in the spinal taps and blood tests. It has been confusing for us and the doctors since there are clear symptoms of "something" being wrong (you can't exactly imagine CH's and Optic Neuritis; and I can't imagine anyone would ever want to). However, no one can even give us a clear hint of what it might be.
As for the questions on insurance and second opinions, we actually moved during the past year. We saw an optometrist, ophthalmologist, neurologist, and rheumatologist in California; and a rheumatologist and neurologist now in Colorado. Fortunately, I work for the state so we have good insurance and haven't had too many problems finding good doctors. The only downside is we live in the country and the closest doctors are 1.5 hrs away so my wife and son have spent a lot of time living with her mother while they try and figure this all out.
Again, thank you for everything and we will stay in touch.
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