This may not be MS!

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Veteran Member

Date Joined Dec 2005
Total Posts : 896
   Posted 8/18/2007 8:40 PM (GMT -6)   
 I was in UMC from Wed.-Fri. of this week.  Not a good
experience!  .
I don't know where to start. I am so depressed right now and don't really
want to come out of this dark hole to face the real world.  My life consists
of daily TPN going in thru a picc line for 20 hours a day, usually it comes
off around 4 or 5 PM and then I am free from carrying the heavy bad the TPN
is in until it's time to reconnect it around 8 or 9 PM.  I have to rely on
my DH to do that because I get to frazzled trying to draw up the vitamins
etc that have to be put in the bad and then getting the air out etc...
before it can be connected to me. I am still nauseous much of the time and
have little energy. I have to have iv phenergan for that and dilaudid for
the severe pain.  DH administers those most of the time and does it
frequently, he gets tired of it, too. I push myself so that my family's life
seems some what normal for them, believe me, it's not normal for me.  My DH
is overwhelmed with all this, he has had to take of many days when I've been
in the hospital and you know this is not the life he sighed up for.  Who
wants a wife who cannot function like she used to?  Who can't eat or drink
anything without it causing her to have extreme pain and dry heaving and
dehydration rapidly?  Who spends time in hospitals that don't know what they
are doing and comes home more confused then when she went in?
The doctors still do not know what this is, my GI doc is pushing for a
gastric electric stimulation device to stimulate my small intestines to
contract the food thru, but my insurance doesn't cover it so I am supposed
to contact legislators to get them to intervene on my behalf and who knows
how to do that and what to do????  These people do not know me!!!  And what
if they approve it and it doesn't help?  Where do I go next? 
 My neurologist
told me yest.(he saw me while I was in the hospital) that he doesn't think I
have MS, he thinks this is a rare neuro muscular or autoimmune disorder that
acts like MS but with more problems. He said if I didn't have all rhese major problems he would say it is still MS but decause of the severity of all this he thinks it's a rear thing that has yet to be diagnosed.
  When will I have an answer as to what
this is that's killing me?  I cannot keep staying on TPN without serious
complications, infection, liver damage etc...  I've already had my liver
enzymes go very high because of the lipids in the TPN, so they had to change
those to 2x a week.
I have a very low white count and red count and my bone marrow biopsy shows
some kind of focal fibrosis of unknown cause and asks whether I have been
looked at for an enlarged spleen or evaluated for the anemia due to chronic
So today I cry, I cannot stop the tears, I don't know what is next, all I
know is I want out! I want answers!
Then on the flip side, I had an Interstim implanted in march to help my
bladder to function like normal and my doctor assured me it would be covered
(I always ask if it needs to be approved) and the insurance paid for it in
full and then in June we received a statement form our insurance saying they
decided it wasn't medically necessary and they withdrew all the money they
had paid, leaving us owing over $60,000.  How does someone handle that?  I'm
trying to get someone involved to clear it up.  My doctor wrote a letter of
medical necessity but it didn't make any difference.  The device needs to be
moved because I have lost weight and there isn't any fat over it so it
sticks out and hurts.  The insur. will not cover any thing that needs to be
done to it. So I have this in me that cannot be fixed if it goes haywire or
if it causes any problems.  I would love to know how you would handle all
this, I am besides myself, too tired and worn out to know what to do next.
I'm sorry I'm so gloomy but that is today for me.  Maybe tomorrow will be a
better day.  I don't want this to be the rest of my life.  I don't see how I
can function much longer.  I need doctors that have a plan and will share it
with me.  I need someone that can get this all straightened out.  Who/where
is that person?  I try to maintain my faith but I am struggling with that
right now.  Please continue your prayers.
Thanks.  Any good advice would be appresiated.  I'm so sorry this is so long.

Michelle ><>

Happy Moments, Praise God.
Difficult Moments, Seek God.
Quiet Moments, Worship God.
Painful Moments, Trust God.
Every Moment, Thank God.

Regular Member

Date Joined Apr 2007
Total Posts : 334
   Posted 8/18/2007 9:51 PM (GMT -6)   



I am so, so sorry that you are going through this. I cannot imagine how horrible this is for you. I only wish I had better words of comfort and advice, but I at least wanted to let you know I really care and am pulling for you.


I know your insurance and financial situation is really bad right now (this is just inexcusable on their parts), but the only thing I can think of is going to a “one stop shop” like the Mayo Clinic, where you basically don’t leave until they figure out what’s wrong. As you know, this is the place to get tested for all of those really rare diseases. This is literally your life you are fighting for, and it really sounds like you are at the point where you have to try everything right now, no matter what it costs. I hope you don’t feel I am being inappropriate for saying this.


I do understand the insurance mess has to be addressed asap, especially if you are to move forward with necessary testing and treatment. Is there someone in your church or greater community that can advocate for you and take some of the burden off of you and your husband? I don’t know where you live, but if your community understands the situation you are in, I am guessing you would have many people willing to help you, even if it is just by flooding your legislators with calls and letters on your behalf. Maybe someone can even organize a fundraiser to help you out with some of the immediate costs?


Hang in there Michelle…hour by hour, or minute by minute if you have to. Please let me know if I can help you in any way…my email is in my profile.



Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 8/19/2007 1:20 AM (GMT -6)   
How I wish there was something I could do for you. You are given so much to bear! Hang in there. My prayers are with you dear one!
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Veteran Member

Date Joined Jun 2005
Total Posts : 2135
   Posted 8/19/2007 5:44 AM (GMT -6)   

I'm so very sorry you're in such an awful situation!  The only help I can offer is this:

indeed, write to your state and federal elected officials -- congressman, senator.  You (or your husband) can find their names and addresses on line. Go to Google (or another search engine) and enter the name of your state, and the words senate and congress, like this:  Wisconsin + senate and congress and links to their offices should appear.

No, they don't know you personally..but they ARE "your" elected officials, you are their constituents, and they do indeed intervene on behalf of their  Often a letter from a congressman or senator will shake loose all sorts of things that an individual can't access on their own.  Expect that one of their representatives will call you back, and want more information, perhaps even access to your medical records. 

And of course appeal any denials from your insurance company. Each company has a specific procedure in place for doing that, and many of them have short times set up for you to do that, so check that right away (or have your husband check).  Also be sure to tell your doctor that the company wants their money - doctors (and hospitals) will often reduce their charges if they know there are insurance problems.

Also contact your state insurance commission. You should be able to find this number in your telephone directory, under "State Government".


I'm so sorry you have to go through all this on top of your medical problems!

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

Regular Member

Date Joined Mar 2007
Total Posts : 260
   Posted 8/19/2007 2:59 PM (GMT -6)   
You are in my thoughts and prayers. I wish there was something i could do for you . I will pray for you. Keep fighting Michelle. You will get answers. Dont give up till you do.
Dx Dec 06, Rebif,44mcgs 3 x wk, Baclofen, Lyrica, Celexa

Regular Member

Date Joined Apr 2006
Total Posts : 136
   Posted 8/19/2007 5:06 PM (GMT -6)   
Ahhh are having one miserable time and your postings are great and we don't care how long they are or how often they are. That is why we are here to be extra support in trying times. Isn't next year an election year for you in the U.S. By all means go to your elective representatives as you are a constituent and the best time to ask them for help is in a year running up to an election. Your dire need alone should make them anxious to help you. I know that the insurance companies play hard ball but surely someone will come through so take all the help you can get from your government reps. Even though I am from Canada I think that elected officials go to bat for their constituents as best they can especially in a case such as yours. Even though you are very ill please let us know (when you are feeling up to it) how you are doing and if you are making any progress. All good wishes and thoughts are being sent your way....Dale

Regular Member

Date Joined Jul 2006
Total Posts : 95
   Posted 8/19/2007 5:56 PM (GMT -6)   
Oh Michelle, this is just so awful for you. We are all here sending positive energy your way. Don't give up or give in, Uppity is right, get onto those people that we pay to represent us and don't give up there until someone does something about your situation. Some of those darn insurance companies will look for any loop hole to get out of paying you. The Mayo clinic sounds like a good idea also. I just know there is someone who can help you and knows what is not right with you, you must keep searching......
Please don't be sorry about how long your post is, we all need to let off steam. You have a lot on your plate.
We all care about you and wish we could do something exceptional to help you. As there is power in a united front (all of us), we are all thinking positive for you I am sure that there will be something good ahead.....

Thinking of you,


Veteran Member

Date Joined Mar 2006
Total Posts : 2146
   Posted 8/20/2007 10:03 AM (GMT -6)   
O Michelle!

U know my heart breaks for u over this!! I just can't believe u'r having to go thru all this!! I will be busy doing anything i can for u and hoping u will be better so so soon!! Please do let us all know anything u need from us. U have a loving and supportive family here who holds u dear to their hearts. Hold on sweet friend.
Co-Moderator, MS Forum
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*

Veteran Member

Date Joined Aug 2005
Total Posts : 682
   Posted 8/20/2007 6:40 PM (GMT -6)   

Hi  Michelle

I just wanted to say I am thinking about you, and all you are going through now.  Gracies Mom gives good advice and I asked her to look at your post because I know her daughter's symptoms sound similar to yours.  I hope you are able to read the info and find the support online for this condition.

You can get well and you will.  It will just take time. You have to be your own advocate and research.  It doesn't seem like most Drs are well versed in this situation (in my situation - lyme in general). There is another girl on the lyme board who also has this condition.  Maybe her Drs or the GI Dr Gacies Mom knows can talk to you and make recommendations and suggest a referral Dr in your area for you. Even if you are not sure if it is the same condition, it would be worthwhie to check it out.

I do know how you feel about your DH and how this is not what he sighed up for.  I am not the person I used to be and I am going through some of those same things.  When I am having a bad day I try to concentrate on one day at a time and not look ahead into the future.

Best Wishes



Veteran Member

Date Joined Dec 2005
Total Posts : 896
   Posted 8/21/2007 6:59 PM (GMT -6)   
Hi All,
I have contacted a state legislator and a senator. The legislator turned my info. over to a liason they use from Blue cross, she is supposed to send my medical info. to 3 docs and see what they think about the gastric stimulator and whatever they decide that's as far as I can go.  I have State insurance and Mississippi is one of 5 states that the insurance commisioner cannot get involved with!!!  The senator took my appeal letter I wrote regarding the Interstim and he is forwarding it to someone he knows (probably the same lady).  That is about all I can I have to wait.
My nausea and pain are so much worst lately.  I am going through phenergan and dilaudid rapidly.  I see the surgeon again in the morning, she is a wonderful doc, she seems to be the only one who wants something to take place to get me off the TPN.  She wants me to have a medicine to try to see if it would help with the gut stuff.  I still haven't rec'd the lab results from Mayo. 
I hope to find out soon what I am dealing with and hopefully find a cure!  Thanks for all your uplifting words and thoughts.  Please continue them!  I have been in such a dark place lately, trying to stay focused but it is so hard.
Michelle ><>

Happy Moments, Praise God.
Difficult Moments, Seek God.
Quiet Moments, Worship God.
Painful Moments, Trust God.
Every Moment, Thank God.

Regular Member

Date Joined Apr 2006
Total Posts : 366
   Posted 8/22/2007 12:38 AM (GMT -6)   

The summer has been crazy for me so I haven't posted in a while but I have been reading when I get a chance.

I don't know really what to say except that my heart cries with you!! You deserve so much more out of life.

Call me or email me if you want. I will cry, laugh and be here for you.


Things ruled out- TIA's, Lyme, Lupus, Crones, Narcolepsy, CFS, Fibro, Parkinson's, arthritis, and brain tumors.
Still nobody has answers.

Started my journey 1/06

When everything's coming your way, you're in the wrong lane.

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