Just spoke with my doctor...

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Susiebuddy
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Date Joined Feb 2005
Total Posts : 1373
   Posted 12/8/2009 2:22 PM (GMT -7)   
Hello again


Well I went in for my MRI last week and my doctor just called.. She said there are areas of "plaque" showing up that is "non specific", but that it could be MS and would explain all my symptoms..... So she is referring me to a neurologist and ordering more tests.. I'm pretty sure I already know what it is.. just have to get an official diagnoses... And that would mean... no more Remicade for my ulcerative colitis, which means, removal of my colon and having to get a permanent ileostomy and a colostomy bag... ugh... I'm SORT of freaking out, but maintaining for now... Thank GOD for Xanax.. lol...

Gretchen1
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Date Joined Jan 2007
Total Posts : 3547
   Posted 12/8/2009 6:04 PM (GMT -7)   
We had another member who had a total colostomy who didn't have the ileostomy with it. She has MS and lupus however.  She is going fantastic now.  Is there a reason you will have to have the ileostomy? Lots of poeple have their colons removed for lots of reasons and that doesn't mean you have to have an ileostomy.  But I could be missing something you have to deal with specifically.
 
I also think you are facing an MS diagnosis.  I am very sorry.  Please ask all the question you need to.  We are here for you if you want to vent or whatever.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 12/8/2009 7:27 PM (GMT -7)   
Thank you Gretchen...

I agree about the impending diagnosis.. I have too many symptoms for it to not be anything else, and with the "areas of plaque" that are showing up on my MRI.... it's pretty much a done-deal in my mind.. BUT.. once I do get a diagnosis, I can get on with my life and move forward.. To be stuck in this "LaLa Land" of not knowing has been the hardest part..

How the heck do you even treat a disease like MS? I think that's my main question for now.... I've been so busy researching the symptoms, I haven't even had a PEEK at how it's treated......lol...

The reason I have opted for the ileostomy is because there are more risks with having the J-pouch procedure and the healing time and adjustment period to using the new pouch can be a year or longer.. I don't have a year to slow down, I don't mind living with a permanent ileo, simpler surgery wise, healing time wise and risk wise... I am an AVID horsewoman and need to be healed quickly in order to resume riding my horses... I have recently been getting into working cattle and going to different events involving cows.. I can't even IMAGINE being not able to ride for a year or more.. and being worried about having "accidents" while adjusting to the Jpouch... I can't even go there.... With the ileo I would have control over my potty habits right from the get-go at least.. Sure I might have to slow down on the type of "Intense" riding I do now for a few weeks or so, but at least I can poke around and enjoy the scenery from the back of my horse.. even if it is at a walk for a while..... lol..

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 12/8/2009 10:47 PM (GMT -7)   
Hey Susie,
 
I have seen your my space.  I love your horses.  I have a horse too.  I got him as a three year old and broke him myself.  8 months later we were showing.  He was wonderful western pleasure horse and won lots of great prizes.  Now he is my trail buddy.  I have had him for nearly 18 years now. 
 
The bad news about MS, there is no cure and for most of us it is progressive.  It can progress slowly and for others it can move along and cause disability.  There are just a handful of FDA treatments and those are all injections.  Hopefully you don't have a fear of needles.  Some decide against treatment as they aren't all that amazingly successful at putting the brakes on this disease.  The treatments are also incredibly expensive.  Without insurance the cost can be in the thousands each month, even with insurance it can be in the hundreds. 
 
You will need to watch your diet, which I am sure you already do.  You will need to stay fit, you look quite fit.  Find a good neurologist you can work with and go from there. 
 
Please ask any questions you may have.  I know I may be jumping the gun, but you have those lesions.  Your symptoms are so indicative and the fact that it can be a remicade induced problem.  Anway, let me know how I can help.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 12/9/2009 1:04 AM (GMT -7)   
Thanks again Gretchen... It's almost midnight here and I can't sleep.. I've been on the internet researching different things and deciding I probably shouldn't right now.. most of it is freaking me out... lol.. Now I feel so anxious I had to take a Xanax and have a cup of tea to settle down.. My hubby wants to be supportive, but has no sense of being sensitive.. so that makes it hard because it's just he and I living in our house now and most of the time at night, I'm alone because he goes to sleep SOOOO early.. (like 7pm ish..) So I find myself alone at night, with my thoughts and worries...

My son is in the Army stationed in South Korea right now and won't be back in the states till April and even then, he's being stationed at a base in Southern CA so I won't be able to see him as often as I'd like.. My 2 stepdaughters are great although one is in Germany for 2 more years and the other is so busy with college and work that I hardly get to see her either... I do have good friends but they have families and lives of their own.... So I'm kinda feeling alone right now.. Even though I know I'm really NOT.. it just seems harder right now because everything is so fresh and I haven't even begun to really process it...

I appreciate your input... I am trying to stay positive, saying to myself it could be worse, I could be diagnosed with terminal cancer or something really devestating.. not that MS isn't, but I feel there are many worse things I could have.. and No, I dont have a fear of needles, so that is good I guess... lol... Thanks again :)

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3547
   Posted 12/9/2009 6:50 AM (GMT -7)   
Wow!  You are going to handle this just fine!  You seem very well adjusted.  I was not happy when I got my diagnosis and I constantly battle the "what ifs" of my future.  I have gotten to where I just don't picture my future anymore since it is so totally unpredictable.  I too was glad it was not cancer, since at one point they were looking into brain cancer.
 
I forgot to tell you I saw your son in your pictures as well.  Your hero...he is very nice looking and you must be very proud of him.  You are very blessed and you seem to know that.  You will do just fine with MS if that indeed is your diagnosis.  Please feel free to post often here and let us know how you are doing.  Where in So. Cal. will he be stationed?  I live in So. Cal.  I was wondering how close he is.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 12/10/2009 9:36 AM (GMT -7)   
Hey there....

Feeling a bit better emotionally this am.. Woke up with completely numb hand/fingers tho... it's starting to wake up now but still pretty numb... inside of my right leg and foot are worse also.... Had a rough night the other night soaking in all that I've found out. It's hard because hubby goes to sleep EARLY at like 7pm and wakes up around 3 or 4am, so I am basically alone in the house after 7pm'ish.... All 3 of our kids are out of the house.. I can't believe Im an empty-nester at 46 years old...lol.. Anyhoo... I'm ok and still waiting for the neurologist to call me with an appt. I think I'll call today and bug them..lol...

Anyhoo... as far as my son.. I think he's going to Baker, CA and will be there for the rest of his tour. Isn't that in the high desert somewhere down there? Then he's reinlisting and I dont know what he'll do then as far as a job.. He had a bad accident in Korea about 3 weeks ago and had to have surgery on his left forearm, he shattered the two bones in it when he fell out of a military vehicle and now has 2 plates and 16 screws in there and his arm looks like frankenstein's scars he says... lol... He says he can do his current job with one hand and eventually he'll be able to use them both again with lots of therapy and all that..

Thanks for the compliments on my son's pics... Yes, he is definately my Hero and I am SOOOO proud of him, but as far as how he looks.. maybe you didn't notice all the TATTOOS he has?? LOL.. Gosh, he's covered with them.. I don't know why he does that.. LOL..... But ya... I think he's good looking, I just hope he slows down on the tattoo thing.. plus it's so expensive, he could be using that money for something ELSE... lol...
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