Possible MS- any advice?

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kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/8/2008 3:06 PM (GMT -6)   
Hi everyone.... I am actually a regular to the CP forum as I have been battling chronic back pain/fibro for years. I had been having some unusual symptoms, even for me, & I would love to get some facts/advice. I'm 31, I have a habit of anytime I feel bad to assume its stemming from one of the other 2 symptoms listed previously. I have had some strange things, hard to swallow, itching all over, dragging one of my legs (I assumed it was from my back), a weird feeling in my hands (not like the normal fibro), spasms (again, assumed it was from my back), eye twitching, problems urinating & sometimes it almost feels like sometimes there is a lightning storm in my brain. I know there are a few other things, but I am sure you guys get the jest of it. I discussed it with my pain specialist- he did a few pushing/pulling things on me & said that it was a possibilty (MS) but that I needed to see a neurologist. He also said my age was prime for the disease to begin to show up.
  I have to admit those words just hit me. I don't know much about MS. He said that it is very treatable. Luckily I live in an area where there are a lot of dr/hospitals/medical schools. I tried to google it, but I am so thankful HW has a thread so I can hear from some people who are dealing with this. I also saw something online where it states treatment for MS can be close to $36,000/mo. Is that true? 
  Can anyone please tell me what led to your diagnosis & how is your life now? Thank you for all the info..... -Shannon
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 12/8/2008 5:19 PM (GMT -6)   
Hey Kttn
 
Welcome to the MS board. I"m sorry for u'r existing symptoms and probs, and for the new ones that are prob really complicating them! U'r symptoms do sound ms-ish, but as u said, they can be from many other things as well. I'd do some more research starting with the National MS Society. I'll include a link and try to find some more for u to check out as well. Do u have an appt with a neurologist yet? That'd be u'r best next step. Try to relax and be ready for the possibility of this taking awhile. Testing for ms isn't really testing FOR ms...it's a process of elimination. U are tested for everything it could be other than ms and when that's all that's left or when u have DEFINITIVE, CLEAR evidence of symptoms and signs that are collectively known for ms, then u will be diagnosed. Hang in there friend. We will be here to  help u along the way.
 
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/8/2008 5:44 PM (GMT -6)   
Hi Kttn,
If you can get a MRI it seems to usually give the most definitive answer and is not painful or invasive. You sound like you have got a lot of stuff to deal with so I am sure you would like to know where you stand. Hang in there
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/8/2008 6:15 PM (GMT -6)   
Hi kttn,
 
Welcome to the MS board.  I don't know what the cost of all MS treatments are but it is true that they are very expensive if you don't have insurance.  Copaoxone is a commonly used drug.  I know that the out of pocket expense is $ 2,800 a month.  Most people only take that if they have insurance.  Your doctor is in a bit of denial.  Most people who actually have MS will tell you that there is NO good treatment for it.  This disease marches on despite any drug intervention.  The very best a drug therapy can do is slow down that progression.  There is no stopping it and no cure.  I hate to be negative but for nearly all of us, that is the sad truth of this disease.
 
Obviously I truly hope you do not have MS.  Keep us posted as to how you are doing. 
 
 
http://www.mult-sclerosis.org/diagnosingms.html
Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 12/8/2008 6:52 PM (GMT -6)   

Sorry Shannon!  I just realized I didn't answer your question!  I was diagnosed after a brief episode of severe vertigo that left me wall walking.  I was hospitalized for a few days.  They eventually found lesions on my brain and spine with an MRI. I also had a lumbar puncture, evoked potentials (vision, hearing, sensory) and blood work.  I had a neurological exam that showed abnormal reflexes and responses.  Everything else was ruled out.  I was diagnosed pretty quickly as I had pretty indicative test results.

For others, it can be a nightmare of tests and doctors.  It can sometimes take years to get a diagnosis.  Good luck with you.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/8/2008 8:26 PM (GMT -6)   
I know the drs do not believe there is anything that helps certainly when you reach secondary progressive where I am. But I believe that there is a lot of alternative stuff you can do that helps, particularly in the early stages. Acupuncture is said to be very beneficial & my dr does it for me. I also watch my diet & think that helps too as I find fried food makes me weak & more tired & spastic. I also do Reiki and self hypnosis which I find helpful. I tend to steer clear of drs particularly the negative ones. :-)
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


kttn251977
Veteran Member


Date Joined Jul 2007
Total Posts : 554
   Posted 12/8/2008 9:48 PM (GMT -6)   
Thanks for all the responses!! I have been through so much with my back, I never expect anything to be a simple diagnosis. Unfortunatly, exercise is not an easy option for me, as housework is even a serious chore. I used to love watching Montel, and I would feel so bad when he talked about all he went through to get a diagnosis & the pain he is always in. When I first started having back trouble I went through about 10 years of wrong diagnosis. And even still, there isn't much other than pills. I think thats more aggrevating than anything, always chompin on pills. :( Thanks for the info.... I really appreciate the kind words.
RX's: Oxycontin 80 MG 2x's daily; Dilaudid 8 MG 4xs daily; Zanaflex 4mg 3x's daily; Restoril 15mg 1x; Soma 3x's daily; Lyrica 100 MG 3x's daily (pain & fibro.); Phenergan 25 MG (as needed); Amitriptyline 25 MG 1x (chronic pain); Cymbalta 60mg 2x's daily (pain from fibro); Metoclopram (as needed) & Senokot (as needed).
"The most critical choice you'll ever make is the one you make about what you're going to do with this. The past is over. The future hasn't happened yet. The only time is now."
- Dr. Phil

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