Confused & Discouraged

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Wingless Butterfly
New Member


Date Joined May 2006
Total Posts : 4
   Posted 1/19/2007 7:48 PM (GMT -7)   
Hello
I am not new to Healing well.com but I am new to the MS  panel...Pleased to be here.
 
I have had Lupus SLE for almost 19 years now since I was 16.  Well for the past year and half  I have been suffering some horrible headaches at least 4 times a week most likely every night but at times I get lucky.  Since I have lupus, my Docs always dx as lupus or stress.  But about 5 months ago, my memory started getting worst than the regular lupus brain fog.  Then I started getting ringing in my rt ear, muffled hearing in the same ear then I started with extreme blur in my right eye and eye pains.  Well finally my doctor did a MRI which showed......"periventricular non specific white matter changes bilaterally which " and "suggests a demyelinating process such as MS but could also be vasulitis." The test shows that "MS cannot be excluded as a diagnosis."
 
Okay now heres the problem, my PCP says I have enough going on don't worry about another issue.  But my rheumy upon receiving the results rushed me to a Neurologist.  The neurologist I saw 1st (I see different ones each time!) said it was of little concern and gave me a return appt, but today I had the return appointment and this Neurologist says MS could be the problem.  Does severe headaches qualify as a symptom?  I know the eyes and the ears problems can be and the tingling in my feet that has just started can also.  Seems like vasulitis would be the issue since I have Lupus but they wont even address that because they are ALMOST certain its something else.  all that has been ruledout is MIGRAINE, STRESS Headaches, CLUSTER headaches, neck/spinal problems, TMJ.......Why cant they decide?  I need some help...PLEASE. confused    

Oh! I also forgot the falling .....I've lost my balance and fallen 3 times in the past six months for no reason.  I didnt get dizzy, or faint I just seem extremely clumsy lately.

 


-Wingless Butterfly
 

Post Edited (Wingless Butterfly) : 1/19/2007 8:10:15 PM (GMT-7)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/19/2007 8:22 PM (GMT -7)   
Hey Wingless Butterfly

Welcome to the MS board. I'm so sorry all this is happening with u. All u need is more to add to the lupus! The symptoms do sound like ms, but it's puzzling why they feel there's a good chance it's ms, yet don't feel it's of any import?? I'd definitely persue this with the neuro u feel most comfortable with...and the second sounds as if they are taking this seriously...as they should be. It'd be a great idea to go to www.nmss.org and check out the symptoms page. Headaches are listed as an ms symptom, but they are usually seen later in the disease progression. Please let us know what the neuro's do and how u proceed. I truely hope u get some help with this and are able to get a quick diagnoses...ms or not. Take good care of u'rself and let us know how u are. One other note...we have live chat on Monday's at 6:00pm (cst) and u'r more than welcome to join us and pick our minds. ;) Hope to see u there...and hope to hear u'v had some progress on this.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


shellypoo
Veteran Member


Date Joined Dec 2005
Total Posts : 896
   Posted 1/19/2007 9:25 PM (GMT -7)   
Welcome to the mS forum!
 
I was diagnosed with lupus 14 years ago and throughout those years I had unexplained symptoms that the rheumy just ignored or said it was related to my neck problems etc...last year I was diagnosed with MS in addition to the lupus.  It is really difficult to decide which symptoms are from what, especially with the overlapping.  Lupus is notorius for causing headaches.  And some people are just predisposed to getting them.
 
Vasculitis is not part of ms so they definately need to decide if the lesions are from that or ms.  I would stick with the neuro, they should run more tests and labs to rule stuff out.  Also, a thorough eye exam by an opthomologist is neccessary to check for optic neuritis.
 
If it is ms you need to be on a medication for it (one of the injectibles) so be sure to keep a list of symptoms and ask your neuro questions.  If anything new comes up then call and let them know.  Hang in there and feel free to ask us anything. :-)
Michelle ><>
Co-Moderator MS forum
 
Happiness is not a destination but a day-to-day journey..


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 1/20/2007 4:58 AM (GMT -7)   
Wingless Butterfly said...
Hello
I am not new to Healing well.com but I am new to the MS  panel...Pleased to be here.
 
I have had Lupus SLE for almost 19 years now since I was 16.  Well for the past year and half  I have been suffering some horrible headaches at least 4 times a week most likely every night but at times I get lucky.  Since I have lupus, my Docs always dx as lupus or stress.  But about 5 months ago, my memory started getting worst than the regular lupus brain fog.  Then I started getting ringing in my rt ear, muffled hearing in the same ear then I started with extreme blur in my right eye and eye pains.  Well finally my doctor did a MRI which showed......"periventricular non specific white matter changes bilaterally which " and "suggests a demyelinating process such as MS but could also be vasulitis." The test shows that "MS cannot be excluded as a diagnosis."
 
Okay now heres the problem, my PCP says I have enough going on don't worry about another issue.  But my rheumy upon receiving the results rushed me to a Neurologist.  The neurologist I saw 1st (I see different ones each time!) said it was of little concern and gave me a return appt, but today I had the return appointment and this Neurologist says MS could be the problem.  Does severe headaches qualify as a symptom?  I know the eyes and the ears problems can be and the tingling in my feet that has just started can also.  Seems like vasulitis would be the issue since I have Lupus but they wont even address that because they are ALMOST certain its something else.  all that has been ruledout is MIGRAINE, STRESS Headaches, CLUSTER headaches, neck/spinal problems, TMJ.......Why cant they decide?  I need some help...PLEASE. confused    

Oh! I also forgot the falling .....I've lost my balance and fallen 3 times in the past six months for no reason.  I didnt get dizzy, or faint I just seem extremely clumsy lately.

 

"They" can't decide because all these various disorders -- lupus, MS, vasculitis, migrain, stress, etc. -- share symptoms, sometimes; "present" themselves in similar ways to a doctor, and on MRI's, and so the doctor needs to rule out as many as possible in order to come to a firm diagnosis.
 
And unfortunately it could also be possible that you have more than one problem occurring.  Headaches have all sorts of causes.  Cluster headache is one form of migraine, and migraines (and cluster headaches) can cause lesions to appear on an MRI.  But vasculitis also can cause headaches, and lesions to appear on an MRI...as can lupus, and MS.  Eye pain can be a sign of optic neuritis -- which often is an early sign of MS -- but a doctor examining your eyes can see pretty clearly if the optic nerve is inflammed (which is a sign of optic neuritis). If it isn't, then the diagnosis of "cluster headache" might be appropriate.
 
The line, "....MS cannot be excluded":  When you get an MRI, and it is "read" by a radiologist (who is the one to fill out that report you're quoting) -- it's sent to your doctor who then interprets it, based on what else he knows about his patient, and what other symptoms are present. 
 
You need to be seeking consistent care from the same doctor(s) who know you and who have been following your health situation.  And where there is inconsistency -- the two neuro reports -- you need to ask your rheumatologist to talk to them and see if he can determine where the inconsistency is, and where to go from there. You should not have to sort that out.  If the rheumatologist isn't willing to do that, then ask your pcp to do that.  You should remind your rheumatologist about the vasculities -- which can be serious if not treated -- and make sure he tells the neuros about that, when he consults with them about your situation.  Good luck!
...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 1/20/2007 7:17 AM (GMT -7)   
Hi Wingless Butterfly,
 
    Certainly is a rough situation when you have one autoimmune disease already and possibly another.  Many of the symptoms overlap and it's hard to figure out what's from what.  Since you've already had the more common headache problems ruled out they need to investigate further.  Vasculitis can sometimes accompany Lupus and that needs to be seriously considered since it was mentioned as a possibility on the MRI. 
 
    Is there anyway you can only see one neuro?  Seeing multiple neuros with different opinions isn't going to get you anywhere quickly and be quite frustrating for you.  Maybe your rheumy, since they referred you, could help you with this problem.  Hang in there, ask lots of questions to your docs about what tests need to be done to sort all this out. Good luck and please feel free to come back anytime.
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Wingless Butterfly
New Member


Date Joined May 2006
Total Posts : 4
   Posted 1/20/2007 8:42 PM (GMT -7)   

Hello again,

Thank You all for the advice....unfortunately, the hospital I have been sent to is a university hospital and I never to rarely get to see the same specialist twice.  My rheumy referred me to this hospital after dropping me as a patient.  I am on medicaid and it is so hard to find drs who take medicaid in my area so for every specialist I need I'm sent to this University hospital- Charity hospital. I will be going thru this all over again with my rheumy since I've been sent there also for that.  about 3 years ago, my rheumy had to relocate and no one else in the area took medicaid within 3 hours drive, so I had to go to University Hospital, I ended up in a wheelchair for a year because every doctor wanted to do something different. And now I'm dealing with neurology.  I am so discouraged that I just want to say heck with it all and not go back but I also want to live life also and I cant do that in pain or worst........ I pray it'll work out.

Thanks again and I will try to join in on the chat.

 


-Wingless Butterfly
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/20/2007 9:13 PM (GMT -7)   
Hey Wingless

Sounds like u'r in a bad situation. I'm not sure of this, but i bet u could get help with docs and a doc/hosp who'd take medicaid thru the National MS Society. Have u been to their site?? It's www.nmss.org. U could get info on u'r local chapter and contact them for help. I can understand how this could be so scattered with what u'r going thru to see a doc, but hang in there. It'll happen and we'll be here to help all we can. U CAN get thru this and u will. Yes, life is worth the living and the quality of life is sooo valuable. Fight for that. ;)
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

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