Thank you guys...and question for those who arent officially diagnosed

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bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 9/10/2007 8:32 PM (GMT -6)   
I posted a few weeks ago about being nervous  becasue I had my neuro appt coming up. It went ok, my MRI's came out clean. The doc says that he cannot completley rule out MS becasue of all the symptoms I have so ill have to go for MRI's every 6 months. I wanted to thank you guys for listening to me and for offering your suggestions.
 
What is most frustrating to me and upsets me is that I have all these symptoms, with no name and no treatment plan. This is the 4th neuro I have been to, the only one who tried to help me in fact so I dont feel any blame. But to those of you who have all the symptoms and have not been officially diagnosed, how do you handle it? Does anyone get treatment without a definitive diagnosis? I just feel helpless becasue there is nothing figured out and I am dealing with all these problems and theres nothing i can do about it. How do you accept it, the not knowing?
 
I want to thank all of you again for giving me a place to talk, its really hard to find people who can put themselves in my place and understand how i feel. I read posts a lot and everyone seems so comforting and helpful. so...... thanks!
 
bunny


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
 
Bipolar
 
Probable MS
 
 
 
 

Post Edited (bunnypucker) : 9/10/2007 8:50:21 PM (GMT-6)


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 9/10/2007 11:14 PM (GMT -6)   
Hi Bunny,
I am not "officially" diagnosed yet, but have gotten a "probable MS". Am waiting for another major flare, or more lesions to confirm the diagnosis. Meantime, I walk with a crutch, or two, depending on the day....have to use a scooter to go any kind of distance....etc etc...it is been 3 years for me. I have not gotten worse....just little things, like twitching in my toes, jerkiness in my legs, sudden weakness and numbness in my legs, severe vertigo leading to falls.....but none of this is new....it waxes and wanes....so I wait.

As far as treatment, my Dr. treats symptoms rather than the disease. I spoke to a woman , actually two ladies, who have had MS for many years and who are chooosing alternative medicine rather than the conventional MS treatment. They said they were too ridden with side effects and FOR THEM , the alternate was better.

I also suffer from crohns disease which keeps me busy a lot of the time LOL! But I use this forum to keep my spirits up. I too get fed up with not knowing what else is going with this tired old body...I have to make a conscious effort to not look at the negative and try to focus on my many blessings. That is not always easy....sometimes the waiting and the "illness" gets the best of you for a time. I have been on anti-depressants from time to time....until I can pick myself up and start seeing the sunshine and hear the birds sing again. We do whatever it takes to get through .

I will keep you in my prayers dear Bunny!Oh. by the way...prayer...if you're inclined to do so, helps a lot too....or meditation and yoga, preferably with a trained meditation guide.

Bon Courage!( Be of good courage)
Mary
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.
 
 


bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 9/11/2007 1:46 PM (GMT -6)   

thanks marie claire :)

interesting that we both have crohns and symptoms of MS. sometimes i cant help but think that the two are related somehow being that both are from screwy immune systems. my symptoms arent getting worse either they are just there, even though i do go thru periods where things are worse. does that happen to you at all? does it frustrate you that you dont have a definite diagnosis?

anyhow thank you so much for your reply :)

bunny


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
 
Bipolar
 
Probable MS
 
 
 
 


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/11/2007 3:36 PM (GMT -6)   
Lots of the stuff I've read about Crohn's Disease does call it an autoimmune disorder. And of course MS is an autoimmune disorder.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 9/17/2007 9:51 AM (GMT -6)   
Bunny I have had ms for close to 24 years now.It took me 6 years to get an official dx.I had several drs. who werent in agreement and yes it was frustrating.Hold your head up high and keep a sense of hunor (is hard I know) I dont suffer from chrons tho but I do know when something else is wrong they blame the condition that is already there.And the tremor thing that was my latest problem the first pills (keppra) didnt calm them down much the myscoline did at first but i still shake noticeably when i try to pick something up.Good Luck to you and I hope you get some answers.pokey79 oh and on ocasion a valium works with that too
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/17/2007 9:59 AM (GMT -6)   
can you all please share with me your symptoms. I have no diagnosis either. I have severe anxiety due to this...not knowing the cause. Please share with me so I can see how close my symptoms are..I appreciate this. Thank you all

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 9/17/2007 10:27 AM (GMT -6)   
Neurogurl, the symptons are fleeting...I personally stated with vertigo.Numbness on one side blurred vision (never lost it) tingling (pins and needles senseation) limbs feeling like they are sleeping when you are very much awake.tilting to one side when your walking dragging a foot band sensation around your stomach electic feeling when you bend your neck forward.Thing is it happens then you remit so alot gets shrugged off.Perfectly understandable for you to be anxious! Nobody wants to hear that they have ms but at times it is a relief cause you can get started on one of the meds and move on.I know several people with ms and all sypmtoms are different but the one common is not to lose your humor..You may have ms but msdoesnt have you.Of course there are good days and bad days.Ask your dr. for something to help you relax.And good luck to you as well..pokey79
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Neurogurl
Regular Member


Date Joined Dec 2006
Total Posts : 373
   Posted 9/17/2007 11:37 AM (GMT -6)   
Hi Pokey,

Thank you. Do you take anything for anxiety?

doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/17/2007 12:14 PM (GMT -6)   
I don't have a diagnosis yet. I have been experiencing tingling in hands and feet, only once I experienced the shock feeling from bending my chin down to my neck, memory loss, tightness around my waist, memory loss, slow word recollection, unable to read and retain information, clumsiness, muscle spasms in right leg, tingling in my nose and cheek, abnormal MRI from 3+ years ago, no symptoms at that time that I could pinpoint, normal spinal tap at that time, normal neurological. Just had my follow up. Simple tests ran in office normal. I have a brain and spinal MRI set in two weeks. EMG in 2 weeks. Looking for possible MS or spinal disc problems according to my new neuro.

pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 9/17/2007 2:29 PM (GMT -6)   
Hi Neurogurl, yes i have an rx for valium i dont take it everyday.............but it is here when i need too. And I do take them when I get anxious.That is so perfectly normal to be on edge waiting for an answer............And to be on something to calm and relax you why not ask for it?In fact i already know what it is and I still have days when I get anxious.Once you find out for sure...you will pick yourself up and go on with things the best that you can...pokey79
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


Jonny
Regular Member


Date Joined Jun 2007
Total Posts : 51
   Posted 9/23/2007 12:03 PM (GMT -6)   

Hi,

Im glad I was reading all of this, I have thyroid/lupus diagnosis since 8 yrs ago  but then started the past few months having lots of spasms, neck, back pains and finally after going into ER a month ago with all this they said I needed a Neurologist, well finally got into her 3 weeks ago she said possible MS, Myasthenia Gravis, or a pinched nerve ........and just by doing a physcial test which I failed 3 of her 5 tests said I have post traumatic neualgia (sp?) I could not even walk a straight line well I have done a MRI (which was not fun) tons and tons of bloodwork and see her this coming friday the 28th, Im PRAYING she comes up with something I know what I have already is hard enough but Im just sick and tired of being sick and tired!  She did put me on Lyrica for pain and sleep becauseI was already on valium from the ER for spasms. The Lyrica is ok for pain but to me not solving the problem she said too the Lyrica will slowly help me off the valium hopefully,  Im just so frustrated with all these new symptoms which are scary.  I do see a phsyciatrist just started with her but she is cautious for depression meds since I just started the Lyrica which I appreciated, so anyways I can relate to all you guys without a Official diagnosis its so frustrating by the way do any neuros even tho you dont have a official diag. treat you anyways?  Im asking if she would just take over my case for the lupus/thyroid as my doc now just said Im out of his "realm" .   Tx Jonny (female)

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