feeling lost and scared

[illinwithoutacause]

hello,

i'm not sure what i hope to gain by writing, but i am getting so freaked out, i just need to get some of this out of my system.  

i have posted my story earlier on this board, but i have been dealing with undiagnosed symptoms for nearly 15 months.  initially, my neurologist told me that they were caused by cervical spondylosis and a c5-c6 herniation.  he did not inspire much confidence in me.  after subsequent consults with a neuro-ophthalmologist and a rheumatologist, it seemed pretty clear there was something else going on.  my neuro ordered a new c-spine MRI in january which revealed inflammation on the anterior cord from c3-c7 and told me i most likely have MS.  he sent me for 3 days of IV solu-medrol which worsened my symptoms, and i have gone steadily downhill since the infusion 7 weeks ago.

i went for a 2nd opinion neuro consult at our local university medical center to discuss my c-spine inflammation last week which went very well.  the doc said if i had come in to see him with just my symptoms, he would not consider MS as a possible dx, but, with the c-spine inflammation, he feels it's imperative to determine if that is what's really going on since early treatment is essential.  he was encouraging about the possible outcome for me since i am not showing signs of weakness or disability at this point in time.  he sent me for both a regular VEP and a multi-focal VEP, along with an OCT exam this past monday (the techs told me both were in the normal range, with the caveat that the doc needs to confirm), and i'm going for a full CNS MRI next week.

i am very happy with my new doctor and the path we are on, but at the same time, i am feeling so terrified.  i have been feeling particularly crummy for the past several days.  i have been waking up in middle of the night sweating and nauseous with a sick feeling under my rib cage and have trouble getting back to sleep.  my cycle is all over the place, but before i get my period, i am a disaster.  the weirdest thing that's been going on is that i have been lactating for the past several months (i stopped nursing my daughter 3.5 years ago), and now my breasts are getting almost as large as they were when i was pregnant, and i know i am not.  my rheumie just checked my prolactin level and it was spot-on perfect.

i feel like i am falling apart--both physically and emotionally.  i have been more or less cooped up in my house since january '09 with little reprieve from my symptoms, since i am often too ill and/or tired to perform my regular functions which has done wonders for my personality, as you can well imagine.

i don't know.  i guess i just needed to vent.  thanks for "listening."

binx

[illinwithoutacause]

thank you, quix, for your reply.  

i was feeling rather desperate when i first wrote, but i think in this case, it may have been hormones that really kicked things into gear.  i got my period AGAIN on thursday (which makes it 2x this month) and that brought me incredible relief both physically and emotionally.  as you picked up on, my depression surrounding all of this has been ratcheted up lately, and i realize that it is because of the new docs, tests, etc., as well as my wacked out cycle, so i do agree that i should have a full endocrinologist work up.  i did see one in january when my rheumy wanted my thyroid checked out since she said it "felt full" upon examination.  an ultrasound revealed heterogeneity of the gland and possible thyroiditis, but the subsequent thyroid blood work the endo did was all normal so they're just watching it for now.  i think i will call her next week to talk about the other hormonal issues.

i do have a counselor i meet with regularly who specializes in helping folks with chronic pain and/or illness.  along with her psych training, she is a former RN, which gives her a better grip on this business than most in her field, and she has been very helpful for me during this roller coaster ride.

another tidbit of info:  i participated in a sjögren's study last month at our university med center and got my results back in the mail yesterday.  the letter said my eye exam, blood work and lip biopsy indicate that i have features of sjögren's.  i will be seeing my rheumie again in a few weeks, so we'll see what she and the new neuro have to say about this.

hope everyone is having a nice weekend.

best wishes, and thank you to everyone for your caring and thoughtful responses to my cry for help.

peace,
binx

[Quixotic1]

Hey, Kiddo, I can see where all of this has you tightened up into a knot and is tossing you about.  I agree that you have moved to a place where someone is wanting to get things cleared up.  This is good, but it also brings up the real concrete possibility that you have something like MS, and when this thought becomes real, it can be very frightening.

The upcoming MRIs should help a lot.  We will all be with you waiting on the answers.

I think the GYN's response to lactation when it shouldn't be happening was lazy and uncaring.  Yes, the majority of spontaneous lactating is not to be worried about, but that is ONLY after they have ruled out the more serious causes.  One would worry about an elevated prolactin level as could be produced by a pituitary tumor.  I'm glad that was checked (Yeah, Rheumie!).  But, the lactating combined with a totally scr*wed up cycle needs checking, in my opinion.

You whole endocrine system needs a review and a request for a referral to an endocrinologist is a great suggestion.

From the tone of your post, I am also concerned about a worsening depression.  Do you have a PCP?  You might ask for a mentaql health referral for someone to talk to.  If that person thinks you might need medication, then that can be pursued, too.  Of course you could have many reasons to be depressed, from feeling lousy, to messed up hormones, to the possibility of having something more severe causing your neuro symptoms.

Can you bring your GP into the picture to help get a grip on all these things?

We'll always be here for you to vent on and to express your concerns to.

Take care of you,

Quix

[Deb61]

Pituitary tumor (many times benign) or pituitary dysfunction needs to be ruled out.  It can cause the symptoms that you've mentioned.  If it is this, your brain MRI that you're getting should show this.  

If the workup with the MRI, neurologist, etc. doesn't find answers for you, you should probably see an endocrinologist.  Thyroid dysfunction can also cause problems like this.  

I'll keep my fingers and toes crossed for your doctor finding answers next week.  I hope it's something that can easily be fixed.

Deb

[illinwithoutacause]

again, i appreciate everyone's feedback so much.

i actually have brought up the lactation with both my GYN and my rheumie, and now my new neurologist.  my GYN simply checked to see if it was really breast milk during my annual exam in january, and said, "yup, you really are lactating."  she also attributed my irregular cycle to stress which sort of annoyed me.  i was like a 28-day clock until last year, and i'm not going to bore you all with other details, but i have been dealing with an incredible amount of stress for the past 7 years and my cycle was never affected.  it was my rheumie who ordered the prolactin check and it was perfectly normal. (i just got the results back in the other day.)  my new neuro said he wanted to wait and see what the prolactin level was before we really discussed it, so i'll bring him a copy of the report during our next appointment.

i know stress is my worst enemy right now and will only succeed in making everything worse for me, but i am having such a hard time managing it.  yes, my symptoms definitely give me anxiety, but even though being in limbo is crazy-making, i think the fact that we are moving closer to a dx is really scaring the pee-pee out of me.

thank you again,
binx

[Udkas]

Hi there,
dealing with the symptoms is bad enough and not feeling well but going through the testing, visiting the doctors etc. is also stressful and can take it's toll.

Vent all you like, I wish I found this forum years ago when I was so confused, we all understand, both the diagnosed and the limbo's because at one stage or other we have all had symptoms that we have not had diagnosed or have even been mis diagnosed.

It sounds to me like you are moving forward to a diagnosis, it is a process of elimination and testing, listening to the patient, monitoring symptoms etc., I wish it could be quicker for you.

Feeling terrified and upset is likely to worsen any symptoms that you have and also affect your homones and your period.  Please see a doctor about your lactating, I don't know anything about this but it's not normal and should not be ignored.

Sending hugs your way, if you do get some answers soon at least you know then what you are dealing with and remember if it is MS, many people with MS live very full and active lives with minimal disability, everyone with MS is different.

Thinking of you,
UDkas.

[DawnYM]

Hi there,  yes vent all you want!!! And we all understand!! I totally understand when you say you want to give your family a break.. It's hard for healthy people around you at least for me!!! It's hard because they don't feel what you feel... My boyfriend always says, what can I do for you..  I don't know what to say to him...

I hope you feel better quick!!  And I'll be waiting to see how things go at your next appointment!!! Hang in there... Oh and here's more hugs!!!

[illinwithoutacause]

thank you all for your kind replies.  i know there isn't a magic wand or perfect thing to say that will make this all go away, but please know that your words are like much needed hugs.

i am blessed with an incredibly supportive husband and family, but, as i am sure most of you can understand, they are struggling with their own aspects of my illness as well.  as a result it is so helpful to have this forum as another means of support, and to give them a little break, too.

blessings to you all,
binx

[HVAC]

Binx,
  It is normal to feel freaked out in your position. Unfortunately totally losing it only hurts you. Try to find out what is in your control today and focus on that. There are lots of may bes that could or could not come to pass. You are not alone. Often the projection of the thing is worse than the thing itself.
   For example I freaked so bad about an LP and it was nothing. I freaked about my diagnosis and  a year later it is not as bad either.

Alex

[supermum_ms]

Hey babe,

Sounds like your being put through a ringer at the moment, vent away, we are listening! I tried to reply a few time but i'm having computer issues at the moment, even this may not get to you lol. I agree with everyone, i think you'll need to be kind to your self for the short term, you really do need to check with the dr's about the lactating, if its not a drug reaction and your not pregnant, then i'm out of ideas with this one, so please call your dr and get it checked out.

Sorry i couldnt be of more help, i just wanted you to know that we hear you!

Cheers.......JJ

[Lulu54]

Binx,
You know this is a perfect place to vent and purge yourself of these worries.  Sometimes it is helpful just to put your concerns out there - and I hope this helped you.

Histories such as yours continually make me thankful that my dx was fast and straight forward.  Living with the questions hanging over you has to be beyond miserable and I'm so sorry you are stuck living this nightmare.

It sounds like this 2nd opinion neuro is interested in helping you to find some answers - I hope it happens quickly for you.  Be sure to talk to all your doctors about lactating - I'm pretty positive that is not going to be associated with MS.  

Plesae come around and share all you want - we're always good listeners even if we don't have answers.

be well, Lulu

[MarisaV]

I wish I knew what to say.

It definitely sux having to go through all this, but it sounds like you're making some progress on getting a diagnosis( and have found a Doctor you like). That's something.

I don't know what to think about the lactation. My first thought was to check your prolactin levels. Are there any medications you're taking that could cause you to lactate? You definitely need to follow up on this. Maybe see an Endocrinologist?

At any rate, you need to just keep moving forward.

Take care.

Mar