Resently Diagnoised

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DougWP
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/12/2007 6:40 PM (GMT -7)   

Hello Everyone,

 

My wife was recently diagnosed with MS, this is tearing me up.  I'll give a little history, a little over 2 years ago we went to the Philippines for her father’s funeral.  After returning she started to feel a little bit of a sour stomach and heartburn.  She asked her Dr. about it and he said she had Acid Reflux and put her on Protonix. 

 

Next we visited a GI Dr. and had all the tests done for Acid Reflux, (Endoscopies, PH monitoring, Barium Swallow, Cat Scans, Speech pathologist and ENT Dr). None of the tests have said yes you definitely have Acid Reflux, only minor results.

 

For the past 2 years my wife has lived with this taking Protonix, Nexium, Prilosec, Tums, Mylanta and Gaviscon.  None of these really help. 

 

She also complains of thin phlegm caught in her throat, some difficulty breathing at times and a sore or scratchy throat.  She also has some difficulty swallowing (dry swallow). Food and drinks are no problem.

 

about 2 weeks ago she was having difficulty breathing and swallowing and asked if I would take her to the emergency room which I did.  Upon arrival she started to shake and stiffen up, her breathing quickened and her eyes began to roll back.  The hospital staff quickly took her back into the ER and gave her meds to stop the seizure, ordered a chest X-ray and admitted her to the hospital.

 

The next day she went through an EEG, and an MRI.  The MRI was of her head, the results of the MRI were diagnosed as having MS (white spots).  Another MRI was scheduled for the spine the next day.  That MRI came back normal, no white spots on the spine.

 

The Neurologist Started telling us to stop by his office anytime and pick up some information on MS and to schedule an appointment to go over treatment.  He also mentioned the types of treatments and their price, which I thought was kind of unusual.  When he asked if there were any questions I asked about the optic nerve.  His answer was that he had a Dr that he wanted us to see about that and not to see anyone else, another red flag goes up.

 

After getting over the initial shock, we started researching on the internet about MS.  Am I to believe that there are a series of tests that are needed to fully diagnose MS?

 

After 4½ days in the hospital my wife was finally released and came home.  2 days later she asked if I could take her back to the ER because she was having stomach pain.  I did but we went to a different hospital.  The ER Dr. gave her a GI cocktail which relieved her stomach pain.  I told him of the diagnosis from the other hospital and he told me that he didn’t think my wife had MS.  He told me that he had seen many patients’ that had white spots on the brain and lived healthy lives.  Now we‘re confused and my wife has doubts about the neurologist.

 

Doug

 


Gretchen1
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Date Joined Jan 2007
Total Posts : 3550
   Posted 10/12/2007 10:43 PM (GMT -7)   

Doug,

I am sorry to hear of your wife's trouble.  You have every reason to be upset.  I hope your wife is feeling better real soon.  It is absolutely standard and very necessary to get a second opinion.  When I was diagnosed the first thing my neurologist did was refer me to another neurologist for second opinion.  Not only did he want me to see another doctor, he referred me to an MS clinic.  It is unheard of to be diagnosed on an MRI alone.  You must also have symptoms that indicate the possibility of MS (this is done with an extensive exam by the neuro- including reflex type tests and tests that can best be described as a field sobriety test). Other tests consisted of MRI of the brain, neck and thoracic spine.  I also had a test called evoked potentials.  There is also the lumbar puncture and extensive blood work.  You must rule out all other infections.  There are many many diseases that mimic MS.  So please get a second opinion.  You are suspicious and rightly so.  Good luck and let us know how you and your wife are doing.

Love and prayers,

 

 



Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
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uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/13/2007 4:36 AM (GMT -7)   

I think you absolutely need to go to another neurologist, and get her thoroughly tested.  The stomach problems and seizure are not a typical early presentation of MS.

I do disagree a bit with Gretchen -- MS can be and often is diagnosed based on an MRI alone, if there are lesions specific to MS and if there are lots of other very typical signs and symptoms that the patient has.  While there might have been lesions appearing on your wife's MRI, there are too many other things that aren't more typically MS going on with her, to not seek a second (or even third!) opinion!

As for the vision problem: Did he suggest that she see an opthamologist as opposed to an optitian, or opthometrist?  If so, that is a reasonable request. An opthamologist is a physician who specialises in eye illnesses, not just things that can be corrected with eyeglasses.  There are even special neurologic opthamologists with even greater skills. So if he was wanting you to be sure to see an opthamologist  (as opposed to the other eye doctor types), that was a good thing.

What the opthamologist will look for is to see whether the optic nerve (which runs behind the eye, a different one behind each eye) is inflammed.  If so, that is an early sign of MS. But then, there are lots of other signs, none of which you've described here!

Your wife needs a thorough health work-up. Gretchen described some of it: blood tests to rule out other things (and maybe get to the bottom of your wife's stomach problems), evoked potentials (which measure the brain waves from your wife's brain to her eyes), another MRI to see if it matches what she's already had done, perhaps an MRI of her spine, maybe a lumbar puncture (or spinal tap) -- while the tap may point to MS, it could also indicate possible other internal infections causing your wife's problems...

Do you have a regular family physician?  If so, start with him or her: they can do the basic blood tests, and depending on the results of those, then send you on to specialists.  In any event, a second opinion, going to a neuro separate from the ones you've already seen, and starting from the beginning describing your wife's intial stomach problems, would certainly be in order.

Good luck to the both of you!

 


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


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 10/13/2007 5:46 AM (GMT -7)   
Hi Doug,
 
    The other tests you read about, evoked potentials and spinal tap, aren't really necessary for the diagnosis itself according to the criteria, but they help make sure the diagnosis is accurate.  If there is enough clinical evidence by neurological exam,  attacks separated by time, and all other possible causes for the brain lesions have been ruled out then the MRI could be enough for a diagnosis. 
 
    It doesn't seem, based on what you have said so far, that she's had enough testing done to rule out things.  Does she have any other issues?  While her symptoms can occur in MS, it's uncommon to see those issues presenting in the beginning stages of the illness.  You mentioned some eye problems, she definately needs to see an opthamologist.  If she does have optic neuritis, that's a pretty big clue towards MS.
 
    Good luck and I would most definately seek out a second opinion.
 
 
 
 
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DougWP
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 10/13/2007 9:02 AM (GMT -7)   
Thanks, Gretchen, Uppitycats and Kimber
You’re advice, guidance and understanding has been a great help. I would like to clear up a statement that I made in my original post. My wife’s vision is ok. I just asked the Nero if it could affect the optic nerve. That’s when he made his statement about seeing a dr. that he knew and nobody else. This is what threw up a red flag with me.

I didn’t recognize the title of the eye doctor that he mentioned; it also is not any of the Dr.s that Uppitycats mentioned, I wish I had written it down.

I don’t think that my wife exhibits any symptoms that are described in anything I’ve read. There is no slurred speech, trouble walking or with the use of her arms, hands or fingers. There is no difficulty explaining what she needs and she doesn’t lose her train of thought. There is nothing physically or mentally that is obvious to me.

The only things that my wife is experiencing are what I described in the first post and she does say she can’t talk for a long time without feeling short of breath and sometimes has tingling or numbness near her nose. Almost all problems she is having occur near bed time.

I do agree with everyone that she definitely needs a second opinion and a full set of tests before we can say for sure that she has MS. She does have a primary care Dr. and we will meet with her to get all the tests scheduled.

One more thing the original Nero said is that he didn’t think she needed to have a spinal tap.

Thanks again, Doug

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/13/2007 9:54 AM (GMT -7)   
Doug, doctors don't like to do spinal taps until they've run everything else and still aren't sure what's going on. She may NOT need a spinal tap..but she does need a more thorough work-up than what the doctor has done!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....

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