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Hope68
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/28/2007 11:19 AM (GMT -6)   
Hi everyone :)  Just a little background on me.  I'm a mother of 3, I'm a stay at home mom ... all my problems started 10yrs ago before the birth of my first child.
 
My symptoms back then were pins and needles, numbness in my scalp,hands, legs and face, twitching and tingles/my muscles were tired and I was exhausted all the time.  Saw a Dr and they said "Anxiety"  6yrs ago I went back to a Dr who then DX'd me with Fibromyalgia........I dealt with it until this past year, I went to a Rheumatologist who confirmed my DX of my Fibro.  He didn't want to hear about my off balance feeling, memory problems or concentration problems.  I mentioned how the inside of my left thigh would feel numb and one of my toes on my left foot go numb.
 
I decided to see a Neuro who wasn't the best, he looked at my list of symptoms and said its either due to my smoking or Im CRAZY or MS.
 
He sent me for an MRI of my Brain and C & T Mri of the spine.  The Brain MRI was approved by insurance but not the others.
My Brain MRI came back normal!!!!!!!  I figured I have had symptoms for 10yrs something would have shown up.  They are still trying to get the other MRI's approved.  I have an appt to have an EMG on the 3rd of Aug.
 
I found another MS board and was asking about the negative MRI. They all said if my Brain MRI was negative than I don't have MS.

They also don't understand why my Dr would want to run the C & T Mri if most of my problems were dizziness/vision problems/memory problems.

They said lesions in your C & T spine would not give you these symptoms, they would cause symptoms below your neck! Now I do have the left toe that goes numb, and my right thigh feel numb at times. I also have that bizzare breast tingling electrical pain thing that goes on.

I'm beginning to wonder if I'm wasting my money thru insurance to even continue this MS quest. I know 10yrs ago I had a numbness like feeling in my scalp/face/arms. Cold water on my hand felt burning hot. Tingles and creepy crawlers all over my body. But that was after all 10yrs ago!

Im still in shock that my Brain MRI didn't even show OLD lesions after 10yrs. Would you all pursue or just accept your Fibro diagnosis and move on?

Depression is setting in, I didn't want MS, but I did want answers as to why I get dizzy/memory loss and total lack of concentration during my flares of dizziness. Maybe its my ear it rings all the time and my other ear has a weird fullness from time to time!

I really am at a loss VIEW IMAGE To add to all of this the MRI center told me in no uncertain terms they do not give out the MRI's or the reports to the patients. They said other places may but not this one! It goes to their Dr then its sent to mine!!!!!

I was staying so positive and feeling like I was going to get some answers now I'm left with none and I feel like all these tests are a waste of time.
 
Thanks for listening
Hope

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/28/2007 1:02 PM (GMT -6)   

Help me out..I'm a little confused.  What are your symptoms *now*..not something that you experienced 10 years ago, but are not now experiencing? Or are all those things still going on?

It sounds to me like your symptoms now are the dizzyness, concentration problems and memory problems that occur when you're experiencing the dizziness?  And an occasional sensation of numbness in an inner thigh and a toe?

The brain MRI you had recently has shown nothing. You have a diagnosis of fibromyalgia, and you are a smoker -- both conditions can lead to all sorts of neurological problems, of course.

As for your MRI -- I've never been an advocate of folks attempting to interpret their own MRI. The folks who do that have had YEARS of medical training and experience.  If you really want a copy of your MRI for your medical records, you can request it from your own physician, and when he gets it, he should give it to you. The MRI center works for the doctor -- not for you -- and so are not obligated to give it to you. The doctor, on the other hand, works for you, and so IS obligated to give you a copy, if you request it (or get a copy of it for you, from the center.)

While indeed folks can have MS and have a negative MRI, you are right when you say that if it were MS, it would be unlilkely that it would not show up after 10 years. But then here is where the confusion sets in for me: if you're no longer experiencing those same symptoms that drove you to a doctor 10 years ago, it's possible that whatever was ailing you then cleared up..went away..and in fact wasn't MS, so no lesions where there then, nor now.

Anyway -- tell us more about what your current symptoms are now, and why you doubt the fibromyalgia diagnosis, and maybe we can help you figure out where to go next, if there are other steps you should be taking.

 



...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Hope68
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/28/2007 2:22 PM (GMT -6)   
I was accepting the Fibro DX.......but my Rheumatologist blew off my dizziness/numbness/memory and concentration problems, I also have visual problems in the shower for 10yrs now off and on, I see shooting stars or fireballs coming out of the shower head.  I was having major difficulty focusing and my head felt entirely off.
 
I called around to Neuro's who treated Fibro patients ( I wasn't looking for MS)  The neurologist suggested MS not me.  He also said he didn't believe in Fibro!!!!!  Which I found odd, his nurse said he treated fibro patients, how can one treat them if he doesn't believe in it!
 
He wanted me to have the Brain MRI and the C & T MRI.....C & T wasn't approved by insurance.  I go for my EMG this week.
 
The reason I wanted the MRI and records was to have them in case I needed to seek another opinion.....I wasn't going to read them I would be clueless.  Its just to hard jumping thru their hoops when I need records sent anywhere.  The Rheumy gave me the hardest time!
 
I had many people with MS tell me I sound like my problem is more like MS than Fibro.  I also read many people were first DX'd with fibro to later find out they had MS all along.
 
IF I have MS I would like to have treatment, there is nothing really they can do for fibro.  I just want it ruled in or out once and for all.
 
I would have thought they would have done that before DXing me with Fibro.

Post Edited (Hope68) : 7/28/2007 2:31:08 PM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/28/2007 3:22 PM (GMT -6)   
I think it a good idea to get your MRI's if you're going to be going to other doctors...it's only that you have to get them from the doctor who ordered them for you...not from the clinic that performed the MRIs. They're only obligated to send them to the doctor who ordered them. So ask your neuro for copies, if you're going to go to another doctor.

Here's a web site that describes the symptoms of fibromyalgia, which include dizziness, confusion, memory loss, as well as specific areas of pain. Does any of this match what you are experiencing?

http://arthritis.about.com/cs/fms/ht/recognizesigns.htm
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Hope68
New Member


Date Joined Jul 2007
Total Posts : 3
   Posted 7/28/2007 6:25 PM (GMT -6)   
I know every single symptom of Fibromyalgia, I have most every one of them.  I'm not the one doubting my Fibro DX........my Neurologist is!  I went to him because I heard he treated people with Fibro.....I found out he doesn't believe in fibro......HE THINKS I HAVE MS.  I never brought it up.
 
I was just looking for information. The Dr suggesting MS threw me, he still wants the c and t mri, he still is thinking MS, not me. 
 
I know MS and Fibro have very similar symptoms, I am in pain every single day!!!!!!!!  It doesn't come and go. 
 
I see I don't belong here, I went over all of this in my last post. 
 
I'm just gonna give up!!!!!!  I have Fibro so basically there is absolutely NO reason to continue on this board or to have any other tests the Neuro has scheduled for me.

Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 7/28/2007 9:11 PM (GMT -6)   
Hi Hope,
 
    Wow, I'm sorry you got a doc that doesn't believe in fibro.  There are still some out there unfortunately.  Personally I don't think it will do any harm to go ahead with the tests, at least as you say it might give you some documentation that indeed everything else has been looked into regarding your symptoms. 
 
    There are some cases of MS with normal brain scans, lesions can also appear in the spine. If those come up clear also, after 10 years it would be highly unlikely that MS is the cause.   The EMG is not specifically a test for MS, but to see if there is some kind of nerve problem outside of the central nervous system that might be causing the problems.  If you do have fibro all of these tests will come up normal. 
 
    You sound like you are having a lot of pain, no one can blame you for wanting to feel better.  Please let us know what you decide and how your tests go should you choose to pursue them.
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
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DFC
Regular Member


Date Joined Apr 2006
Total Posts : 136
   Posted 7/28/2007 9:33 PM (GMT -6)   

Hi Hope, 

 Uppitycats was giving you sound information. I will say that I don't think she was telling you that you have been misdiagnosed. However both Fibro and MS diagnoses can be a long process. They do have many similarities, at least in the beginning. I am sorry that the neuro doctor you went to see was so callous as to say that there is no such thing as Fibro. I know many people who were diagnosed with MS and turned out to have Fibro and vice versa...many that have be diagnosed with Fibro and it later turned out to be benign MS. Doctors are not Gods and they may or may not get a correct diagnosis on the first bounce. However that doesn't give them to be disrespectful to you for any previous diagnosis that has been made. This disrespect can cause a patient to get angry and confused. One thing I will say to you is that if you are comfortable with your fibro diagnosis then go with that as each particular disease will manifest itself eventually.  However this is where Uppity and I disagree as she believes in early diagnosis in the case of MS and disease modifying therapy and I do not, and therefore early diagnosis of MS is not as large an issue to me. However that is a personal decision and whatever you decide be your own advocate where your medical treatment is concerned but do not totally dismiss your doctor's input. Take what advice that makes you comfortable because I will tell you many on this MS site want a diagnosis as it gives them some measure of comfort that they can now embark on a course of medical action, as at last, we do not feel like we are losing our minds or imagining all of our symptoms.

  I think that if you are comfortable with the Fibro diagnosis, and it seems like you are, perhaps the fibro board is your best place to post. I do not think that it is the intention of any of these boards to compete with each other. I think we are just trying to help and I know that Uppity is very knowledgable and was just trying to be helpful as we all try to be. No one questions your ability to grasp or know all the symptoms of Fibro but rather we were trying to help you. For what it is worth I am the queen of being defensive...and take it from me it serves very little positive purpose. I am, after 55 years, just beginning to grasp that concept. Good luck and I hope things turn out well.   Dale

Post Edited (DFC) : 7/28/2007 9:40:55 PM (GMT-6)


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/29/2007 6:20 AM (GMT -6)   

I'm very sorry you found my post offensive. It did sound to me like you were questioning your diagnosis of fibro, though, when you  talked about fibro symptoms and were questioning whether in fact they were symptoms of MS.  If your current doctor is telling you he dosen't believe in fibro as a legitimate illness, seems like you need to be finding a different doctor.

I was truly trying to be helpful, finding legitimate sites that described fibro symptoms that you could print out and share with your doctor, if he still has doubts, that's all.

 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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