Should I just stop looking?

[meg321]

I may have mentioned that I have been sick, I don't even get up and go anywhere....I have been trying to find out what is wrong but I am not having any luck at all, they all point me back to MS.

My question is this, shall I just forget it and just live with it?  I am really tired of all of it...

hugs, meg

[PastorDan]

That's one very big reason we're here, Megster.  It's not only sharing information, but also sharing experiences, and the emotional stuff that is inextricably a part of who we are and what we're going through.  If we can help each other a bit, we're thankful.

[meg321]

I think I am just ranting, but I do watch movies a lot.  And we have netflix and the roku player, which I watch a lot.  I really don't see Dr. C that much, once a year is all, I think my next appt is in Feb.

I usually deal with her a nurse now but they just changed my nurse now.
I think a lot of this is caused by depression sometimes.

Everyone who tells me to get out are right I am sure.  Since I have been feeling sick, I haven't been driving and am a little afraid to get ut to tell you the truth.

I better get off of here, but this has all been been good for me

hugs, meg

[meg321]

Hi Mike, yes, i have been dx'd for MS....I was rather vague, sorry..

meg

[BOK2Bjan]

I can so relate.  Once you have a dx, doctors just blame EVERYTHING that happens to you on that.  I was first dx with systemic sclerosis, which causes all of my internal organs to gradually turn to scar tissue and my joints to swell and be extremely painful.  I now have an esophagus that is just a flaccid big tube and all of my GI tract is useless.  I had a foot of colon removed, but it didn't really help.  I have my gastric contents come up when I fall asleep - even if I'm sitting up straight.  It's awful, cause it comes out my nose, and also goes into my lungs.  I've gone into a coma and respiratory failure and almost died - had it not been for my kids getting me to the ER in the "nic of time".  That was the worst, but there are so many days every week (like this one) where I get a fever due to the lungs being assaulted and I am on O2 as well as a BiPap machine.  They need to put a feeding tube in, but I say no cause even then gastric juices with acid would still come up and maybe do even more damage.  It's not fun.

Anyway - my doctor kept saying that all of the MS symptoms I was having must be due to the systemic sclerosis (SSc).  I kept saying that SSc didn't have neurological symptoms so I'd go to a neurologist and they would just treat the local neurological symptom and not look for a cause.  It was years later when I was in the hospital for something and my neurologist walked into my room and said "well, Jan, you have a slam dunk diagnosis of MS.  Here are 4 drugs treatments to choose from.  Look them over and let me know which one and we'll get you started" slight smile and exit the room.  I was left there wondering what had happened.

Apparently, unknown to me, a previous MRI had shown lesions characteristic of MS.  Then, I'd had lumbar punctures periodically for other serious illnesses and this visit, I'd repeated all those tests and so it was a definitive result.  Then  my illnesses were blamed on it.  But now that I also have Type 1 Diabetes, Interstitial Cystitis, Sjogrens, low gamaglobulins and on and on.  My doctors just shake their heads and don't know what to think.

I'm now on pain meds, thyroid, nexium, prednisone (when necessary), provigil )when needed, anti-spasmotics for the MS, and massive laxatives for the gastroparesis (delayed emptying, which could be from SSc or DM1, or a disease in and of itself.  Various other meds are there when needed; my doctor trusts me like he would another doctor.  HE knows I research my conditions thoroughly and know biology and physiology, as well as medicine.  I just wish there was something that could HELP.

So, I feel your pain.  I'm- you're sick - and we're just told, well, I guess it's your MS (or whatever) and give you a puzzled look.  Let's face it - medicine doesn't have many answers for autoimmune diseases.  They're very complex and even the DMARDs don't really stop the progression of the disease - just the overt relapses.  Behind the scenes the disease is still just marching along.  Studies show that even patients who have much fewer relapses, or flares, statistically show no less permanent disability in the end.  Some are going to have milder courses and some more debilitating.

Sorry for the long post, but I just wanted you to know you were not alone with your frustration.  I wish you peace with your illness, but vigilance with your new or troublesome symptoms.  Not everything is the MS and you need to make sure something isn't being ignored that could be treated.

Blessings, Jan

[Guitar_grrrl]

Meg, I'm sorry you're suffering so, and I know you've been sick for a long time.  What does Dr. C say?  

Sometimes, despite everyone's best efforts, we need to take it all just a day at a time (OK, 5 minutes at a time?).  Treat yourself as best you can. Enjoy a movie (do you have Netflix?), get your DH to give you a light shoulder rub, maybe give him one, too. A nice cuppa tea...Breathe....

Thinking of you - ((((Meg))))

Lisa

[Mike_Shuswap]

Hi Meg, I might be mistaken but it seems to me you are not in limboland and have been dx'd with MS for some time now. I seem to recall your trying to reduce the amount of drugs you were taking, but I don't remember how that worked out for you. I apologize if I got this wrong, please set me straight.

PD's last bit in his firest response is right on, a little break here and there, but we go on.

Try and take care,

Mike

[PastorDan]

JB touches one of the most frustrating parts of Limboland.  You can't fight it if you don't know what it is.  For a while I thought, why not just TRY something used against MS issues (I was thinking IV steroids at the time, generally) to see if it will work?   The problem there is, what if that is the one treatment you DON'T want to use for a.particular mimic, and then that's what it eventually proves to be?

Would it really be wise to try any of the CRAB concoctions if I really don't have something that they might inhibit?  These.aren't ....   Well, I didn't mean to hijack the thread, and I have to turn in or risk waking grandcritters.  God bless y'all.

[johnniebear]

I've learned while there isn't  a DX,  stay strong for those around you and care and love and  support you.

Your not alone  many of us  don't have a DX  that they can treat.

I wish I could say others words of wisdom , tell you  stay strong and give you a pat on the back and send you on  your merry way.. Its not that easy.  

It's the MS Hokey Pokey..


take care
JB.

[Lulu54]

Pd has a great respoinse - I'm so sorry you are continuing to suffer.  I hope there will be better days ahead for you.

[PastorDan]

Hey, megster!  Similar thoughts have crossed my mind, and I am looking at bad options.  Sometimes (like right now) it doesn't seem like I'll ever get an answer, and with our new.health care coverage, chasing after one is more difficult and way more expensive.

At the same time, I can't give up, because I have to work to eat, clothe, and shelter myself.  Due to a long and complicated bunch of career track changes and other issues in the past, I have no disability coverage, so I have to work or depend entirely on family, none of whom are well-off.

Now, even if you are independently wealthy, you still want to try your best to be self-sufficient to the extent of personal care, if nothing else.  I can't believe any of us would want to be bathed and spoon fed if we can avoid it.

So, while it's tiring, frustrating, expensive, and a royal pain, we slog on.  Maybe take a little break here &there when we can, but on we go.

Does this make sense?