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Old 07-19-2010, 12:41 PM #1
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lyndarva lyndarva is offline
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lyndarva lyndarva is offline
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Default intro why I am here

I have had neurological problems for years, too many to list, but symptoms like MS to the point that all my doctors believe and have said I have MS except my neurologist. He says he has to have proof in the form of lesions on the MRIs. He does MRIs at least yearly. Other doctors treat me as if I have MS. I won't go into all of the symptoms, but they vary and new ones are added to it, I have flares. More than one doctor has said that IF this isn't MS, then it is something just like it.

I am frustrated right now. I have xrays going back twenty years, in various cities and hospitals and clinics that show I have bulging disks in my neck and lower back. I have had pain in these places for at least that long, and I was rear-ended over twenty years ago. Suddenly, the tests reveal no abnormality with the vertebrae according to hospital xrays. I have an extremely difficult time believing that. I started having neck pains again very severely three months ago. My GP sent me for new xrays and I was told no disk problems. After all of these problems and no help from a MD about the neck, I decided to see a chiropractor that is supposed to be good. He took a lot of xrays and showed me the xrays that showed I have a bone spur on one of the neck vertebrae that is turned in. I have had swallowing problems for some time and part of that is because of esonphilic esophagitis, but the GI doctor said it didn't explain all of the problems. I have read that this type of bone spur can also cause swallowing problems. I went to the hospital to get a copy of the report and the CD of xrays to take to a spine specialist. When I read the report, it said no lesions. It did not mention vertebrae at all, as no abnormality of the vertebrae as you would normally see. I am puzzled. I don't know who to believe. My neurologist would never send me for an xray to look at lesions, so why did the general physician, and why was it worded this way. I just feel like I am being lied to by doctors.

My husband works in the radiology field and he cannot explain this either. It makes me question everything about doctors.
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Old 07-19-2010, 01:56 PM #2
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Smile Hello Lyndarva!

Welcome~
And thanks for introducing yourself
You will find many wonderful caring folks here!
....and i TOTALLY understand your 'confusion' <<--- is that an oxy-moron?!

Actually, this 'miscommunication' ...or 'neglect' of communication.....seems to be happening more and more these days and IMHO is probably why more and more folks turn to these forums...... I for one have gained so much more knowledge and understanding simply by listening and communicating with the actual 'patient' as opposed to 'looking up' to the medical profession (and i say this with all due respect TO the medical profession).....

I found myself going in circles of frustration while trying to piece together the fragmented information I was receiving by trying to pin down a certain 'name' to what i was battling. I went to several specialists and went for '2nd' opinions......and ended up no more informed than I was when I first started reaching out for help........
So THEN i started doing the 'google-manic-attack' and ended up having myself convinced I had 101 different terminal diseases

Finally, i just started listening to ME.....and then, i hooked up with other people who 'sounded' just LIKE me!! And have since found that the SUPPORT by far outweighs the confusion........so this is where i live now.
Yes, we DO need medical personnel to oversee our conditions and symptoms...and yes it can be very difficult in finding the right caretaker, especially with the health industry bombarded and overflowing with case managements....but at least i'm not swimming around in a huge sea full of endless cyber-studies, leaving me scratching my head in confusion.

It's one thing to be sitting face to face with our Dr, yet, what gets 'dictated' into our chart may be a completely different conversation than what we were led to believe.
I hope you find the same peace and support that so many others have found here, simply by realizing that we are not alone in our struggles...and hopefully, you will get clearer communication within your healthcare team.
There are several forums right here at NT in which you may find helpful in what you describe. Most of us certainly know what 'pain' is all about.....unfortunately there are so many different TYPES of pain.....

At least it's a good feeling to know that we are not alone.
Welcome Aboard

Truly caring
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Old 07-20-2010, 01:49 AM #3
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Darlene Darlene is offline
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Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

As you can tell there are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene
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"Life without God is like an unsharpened pencil -- it has no point.
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Old 07-21-2010, 11:15 AM #4
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Hi, and welcome to NT! This is such a great place with many friendly, caring, and helpful people. We're so glad you found us!

I am going to post a few links for you to check out. One will be the MS forum--and, you don't have to have a diagnosis to post there. The other one is for MSers who have things to post that don't have anything to do with MS, and that is The Stumble Inn.

I hope to see you there!

http://neurotalk.psychcentral.com/forum17.html

http://neurotalk.psychcentral.com/forum102.html

On the first page of the MS forum, at the very top, is a place to introduce yourself to the MS community. I suggest you post there.

I wish you the best of luck. I know how frustrating it can be to get a diagnosis, especially from a neurologist. If you need help or questions answered, please don't hesitate to PM me and I'll try to help or at least point you in the right direction.
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