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Old 03-13-2006, 10:23 AM   #1
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angry and frustrated w/ neuros

I went to see a neuro-opthamalogist last week and I have been so angry since that I just need to vent. After examining my eyes he told me "You have miminmal loss of perefial vision in your right eye, as for the odd sensations in your head, they have been happening for 4 1/2 years I doubt it is anything that will kill you. Come back in 6 months and we will check your vision again" I was so stunned I couldn't think of what to say (my brain is working sooo slow these days) First off if it was his vision would he concider 5% "miminamal"? or perhaps if I was a man? This doctor came highly recomended by an aquantance who he said "saved his life and vision" As for the odd sensations not going to kill me, maybe I should have got that in writing or perhaps he could speak at my eulogy?
What about trying to find the cause of the loss instead of waiting to see if I lose more? I am just so tired of seeing neuros (he was about the 7th) that I don't think I can bare to do it anymore. If it wasn't for my primary doctor being a godsend and telling me she believes me and wants to keep investigating and testing till we find out what is wrong, I think I would give up entirely. I see her next week.
I did a little research and I am going to ask her to do pituitary testing as a cyst there can cause many of the symptoms I have (I have had or currently have cysts in my breast, hand, foot, sinus, and ovary) and are hard to detect on MRI and must have special MRI, blood, and urine test to see if it is functioning properly.
My symptoms:
1)Odd sensation in head, feels like waves or ripples, can vary in degree to mild to knock me over and lose my balance
2) vision disturbance, mostly perefial, but I can see "stains"
on objects and then it disappears, blurry vision and rays from light colored objects
3) stabbing pains, like someone jabbed me, can be anywhere on the body last for a day in same area.
4)acne, after 43 years of good skin, last 3 months face has been spotted with red spots that sometimes come to a head (not all of them just some)
5) cognitive problems, have a hard time thinking of words (but can usually know what letter it starts with)
6) tried for ten years to have another child but was unable even though husband checked out okay.
7) and many more that I can't think of right now.
If anyone has any ideas I would greatly appreciate any feed back.
Thank you all for the help I have received in the past.

 
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Old 03-15-2006, 09:12 AM   #2
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Re: angry and frustrated w/ neuros

Hi, so sorry to hear of all you are going through. We share identical symptoms (minus the trying to get pregnant part ) and I was diagnosed with fibromyalgia. It might be a good idea to get checked out by a rheumatologist. Hang in there, and I hope you find an answer soon!
~Mim

 
Old 03-15-2006, 11:17 AM   #3
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Re: angry and frustrated w/ neuros

Quick question, do you tell your Doctors to what degree your symptoms are affecting your capability at your work place and whether these problems are hindering your ability to care for yourself or your family?
enie

 
Old 03-15-2006, 02:18 PM   #4
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Re: angry and frustrated w/ neuros

Yes, Enie I do tell them. I keep a log of frequent to constant problems I find myself facing. I usually am told to try working on sleeping better and try to exercise more. I "work out" at therapy 6 + hours a week, and at home daily with my therapy routine. One doctor seems appreciative so he can decide the next step to wellness. The other docter seems to think that if I go back to work I will get back to normal. Any suggestions??????
~Mim

 
Old 03-16-2006, 07:58 AM   #5
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Re: angry and frustrated w/ neuros

Thanks for the replies. I went to a rheumatologists pa and she ran tests and decided that wasn't it.
I am currently on SSDI because me medical problems have made it impossible for me to work.
I see my regular doc on monday to get the results from blood work, MRI (I have a protruding disc in my neck under the cervical fusion), and neuro-op's report.
If my blood work shows anything I am going to insist on a referal to an endocrinologist.

 
Old 03-16-2006, 01:05 PM   #6
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Re: angry and frustrated w/ neuros

Tiresome,
You said:
*If it wasn't for my primary doctor being a godsend and telling me she believes me and wants to keep investigating and testing till we find out what is wrong, I think I would give up entirely.*
I wanted to tell you that you are truly blessed to have such a Doctor.

Oh yeah, I know what venting is very well; been doing it a lot since I found this board too. If you have time to read, I’d like to share a couple of things I learned from wrestling with Doctors that want to ignore your symptoms.

Because I've been unable to work for so long, all I'm able to afford to go to is a medical teaching college 70 miles from here. You know how it goes; no work, no insurance. I have found through the years that a lot of Resident Doctors pretty much only care about their text book step one step two procedures, and they don't consider whether the patient’s illness or problem is hindering that patient’s ability to make a living or care for their family, or not. Most of them only care about doing it by the book in order to get their shingle.

Some of your symptoms do sound like a neurological problem, so don’t give up. There are a lot of good Neurologists out there. Make sure you write down the medical term for your symptoms plus the neurological symptoms and let the next Doc do the diagnosing. I’ve had experience with a lot of Specialist Doctors. Some of them only hear symptoms in ‘medical terms’ and see patient’s descriptions and generalized symptoms as something that just gets in the way of their evaluation and diagnostic processes and others want to know everything. Have both available.
I was wondering if you made your next Neurologist aware that your problems were disabling you from doing the things you need to do. Maybe that would help; either from having compassion (because some Docs do care about the patient), or for financial gain (You know; no job - no insurance - no Doc). I’m probably just dreaming though…zzzzzzzzzz

Also, I got these little tidbits of information from a very nice Neurologist a short while back… It took me awhile to learn…

If I don’t agree with the Doctor’s treatment or diagnosis and I’m still having problems, then I should keep making appointments and tell them I’ll see anyone that’s available (usually a NP or first year Resident) until I get some help.
I also needed to learn to be ‘inflexibly stubborn’, and to avoid the ‘trigger words’ that cause the Doctor to start thinking paranoia or depression (They tend to tune out the rest of your symptoms after they have their mind set on those).

Beware of Doctors in training who tend to put patients that don’t nicely fit into a standard text book diagnosis in to the ‘easy out’ baskets. Fibromyalgia, Chronic Fatigue, and Depression are three. Not because these conditions aren’t real (they are very real, and they are indeed very painful conditions, with no quick fixes), but because these three conditions have symptoms that are so general they can be made to fit just about anyone that has multiple symptoms and complains too much. So when a patient gives too many generalized symptoms, some of them feel they can’t always afford to take a lot of time investigating each and every symptom to find out the true cause. They only want to find a conclusion plus the reasoning for giving their diagnosis.
{It’s the ‘Me thinks you doth protest too much’; and ‘I just want to get out of here and go on with the next patient’ Syndrome}.
With diagnosis in hand, they usually prescribe Antidepressants and the latest all new ‘fix it all’ dietary formula; plus, they either; pat the patient on the head and say ‘it is all in your head’, or, they ignore most of the patient’s ‘symptoms’ and say something like,” I can only deal with one or two problems today”, and then they are on there way out the door.
When they diagnose Fibromyalgia, Chronic Fatigue, or Depression, then their medical training has given them permission to somewhat ignore any new symptoms and stick to the book as far as treatment is concerned, because their medical training says it can be psychosomatic.

As far as Depression is concerned, never mind that most people were not depressed befor their symptoms started. But between; their constant pain, losing their ability to work (because of the pain), plus Doctor’s who don’t believe them, viola’ a lot of people become depressed.
Heck even if you come in the Doctor’s office smiling, then they either don’t believe you’re in pain or they think you’re suppressing your depression.
As for me, I guess the reason I vent so much is:
After years of wrestling with the head Primary Care Resident that kept telling me it was; Chronic Fatigue, then Depression, then Fibromyalgia, Stress, and then Gerd. And then finally one day right after I fell and broke my leg from one of my blackouts, he said: “All of your symptoms are psychosomatic and there is really nothing wrong with you. It’s all in your head. Isn’t that great? You should be happy.” I hobbled out disgusted…. When I was finally able to go to a Neurologist, I finally found some help. It turned out that I had had several undiagnosed heart attacks. I now have a pacemaker for my blackouts, and I am being treated for; three separate heart conditions, Marfans, Bad Neuralgia, and Migraines.

Just don’t give up,
enie
As usual, my post is too long, Sorry.

 
Old 03-17-2006, 04:02 PM   #7
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Re: angry and frustrated w/ neuros

Enie, thank you for your reply. I didn't find it "too long", I thought it was very helpful. I see my primary doc on monday (time seems to be dragging) to get some test results. Hopefully we are getting closer to finding out what is wrong. Thanks again for the help.

 
Old 04-03-2006, 09:38 PM   #8
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Re: angry and frustrated w/ neuros

I have Lyme...check for that!!!!

 
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