I'm back and not with good news!

[deebrown30]

Hi all!  I joined this discussion a few months ago.  I was feeling better and I thought that I was on the road to recovery(even though I have had no real treatments).  Well, the symptoms are returning.  Not quite as bad as the first life changing episode, but nevertheless, they are back.  The vertigo is really taking a toll on me.  I have been battling this for 7 years but when it first started I would just have rounds of vertigo and many months in between that I was free from it.  Since April I have had it constantly.  Some days it is mild some days it is severe.  I truly feel like I am losing my mind.  I still do not have a dx and I have been tested for everything under the sun.  A rheumy wanted to treat me with Prednisone then put me on immune suppressants but i am not willing to do that without a dx.  What happens of they suppress my immune system and it is not auto immune???  I don't know where to go anymore.  Sorry for the depressing note.....I am not in good spirits today and just needed to vent....take care everyone!

[deebrown30]

Thanks so much for your support.....I am feeling better today.  Kinda got into a slump for a few days and that combined with everything else is sometimes hard to deal with at times....I hope you all are doing as well as possible!!

[illinwithoutacause]

hi again, dee,

to answer your question about plaquenil side effects, i have only taken 3 doses so far and haven't had anything turn up yet.  my doc is easing me into it by taking one pill every other day for this week, then one every day the following week, and ultimately 2 a day.  like you, i am incredibly sensitive and if anyone is going to have a negative reaction to this stuff, it's going to be me.  so, once i am up to speed with the full dose, i will certainly let you know how it's going.  from what i understand, the GI symptoms usually start first and then taper off once your body acclimates.  something to look forward to, i guess...

i am going to have a baseline ophthalmic exam tomorrow so they can monitor my retina which can be severely impacted by this med.  i can't begin to tell you how much i don't want to be taking it, but like i said, it boiled down to a benefit vs. burden situation at this point.  do i risk having a stroke or losing my eyesight due to optic nerve or cranial vasculopathy, or do i risk dealing with the negative side effects that may or may not impact me?  my husband and i decided upon the latter.

i think it's a good idea to talk with your doc openly about your concerns.  perhaps she/he can help with your decision-making process.

i am so sorry to hear about your dad.  i know how stressful that all can be.

with healing thoughts,
binx

[silkcut]

Hi dee

I'm sorry that you're struggling so much, vertigo must be the devil to live with on top of knowing that you're at risk from stroke and having eye/vision problems. Not surprised you feel so down - you need to sound off...

I'm not sure I can add anything to what binx and Maria have said so well, except that I know how scary it is to take meds when the docs are basically giving them to you on an experimental basis.

'Lost in lala land' ! Yep, that just about sums it! But whose lala land?! I'm pretty sure it's the lala land that the medical community inhabits - not one of my own construction!

bestest
samx

[deebrown30]

I am going to go back to the doctor and just tell her that i was a chicken but that I think I am ready now.  There are a few things that may have triggered a relapse:  my dad is very ill and spent quite a few days in ICU and now is being referred for a heart transplant, and the holidays are always a huge stressor in my life.  Who know....seems that the smallest of things wrecks my body these days.  I hope you are doing better now...take care!

[MrsAristotle]

Hi dee your like me, I was offered intravenous steroids but decided against it. I dont want to take stuff unless I know what is really wrong with me, and I dont do medication well either. Mind you the neuro put me off taking the steroids saying it can affect your bones and heart and other things blah blah, and I even had to have a bone scan.

Has anything happened of late that could have started a relapse because it sounds to me you have a relapse at the moment.

I am really suffering this weeks yet a few weeks back I felt great.

Try to rest a bit more if you can.

Can you not go back and discuss taking this medication again? Perhaps it would be a good thing to try because then if it does help you know you are in the right direction.

Listen Dee you can moan on here as much as you want that is what this place is for to support one another. Big hugs, Mariaxxxxx

[deebrown30]

Thanks for your encouragement.  I feel that maybe I should have tried the medicine because now I feel like it is coming back again.  Have you noticed any changes since you started the meds?  It is all very scary for me.  I do not tolerate medicine well at all....extremely sensitive to most. I had scleritis for 9 months and I thought that it was gone but I noticed my eye was hurting some yesterday and the redness looks like it may be trying to come back...I had numerous vision problems yesterday too.  I love this group because so many people are where I am.....and that is lost in lala land.  Hope you continue to feel better.....
Hugs
Dawn

[illinwithoutacause]

hello, dee~

i am sorry your symptoms have reared their ugly head again, but i am glad you have returned to the group so you can get some extra support during this difficult time.  i find so much comfort in having someone tell me they know exactly how i feel--both emotionally and physically--and really mean it.  and please don't apologize for your "depressing note".  that's what this place is all about.

i have actually just started immune suppressant medication for a suspected autoimmune process and i can totally understand your apprehension about taking that medication without a clear cut dx.  if i weren't experiencing optic nerve/cerebral vascular problems, i wouldn't touch the stuff without a precise label on my condition; but at this point, i feel like i have no choice since i am risk of a stroke.  we're doing a 3-month trial along with a bunch of other blood tests, so we'll see how it goes.

with healing thoughts,
binx