Just need to talk.

[ksrn19]

Hey guys. You might remember me from a post about a week ago after I had gotten an MRI showing 4 lesions and a whole slew of symptoms compatible with MS...as well as other "episodes" in the past that I am now realizing was probably MS-related. I go to the neurologist tomorrow and I can't wait. I've been a nervous wreck since last Friday and I'm assuming this is why the oral prednisone they prescribed me didn't do anything, in fact everything seems to be getting worse. Yesterday during a session with my dog trainer, I was getting so confused with what she was saying and I couldn't seem to think clearly. I started crying because it scared me. I'm so freaking exhausted all the time and my whole body is just achy and tired. My eyesight in my right eye is crap, and it's not improving. Sometimes in darker light settings I feel like it's gone away and I get excited, only to walk into a well-lit room and realize that it's still there. My right foot feels like it's wet, I keep wiping it off and nothing's there. I called into work tonight (I work night shift in a CVICU as an RN) mainly because I'm so randomly emotional that I'm afraid I'll have a breakdown at work. Especially if I have to deal with family members or a compliated/sick patient and get stressed out. I'm feeling bad because of this. I feel like my symptoms are getting worse because it's psychosomatic or something and it's all in my head, because MS is now "on the brain" and I'm thinking about it so much. I try to put it out of my mind and just go about my business, then I overdo it and something happens like my leg giving out or I get confused, then I start crying because it's really there. Will my eyesight come back? Will I stop feeling so freaking tired? I pride myself in being a smart person...I think that's why I start crying every time I can't think of what I'm trying to say or I get confused easily. That's the most devastating part to me is losing my cognitive abilities. Will the medications put a stop to the progression of this too? I just need someone to talk to right now. Thanks

[ksrn19]

Update for you guys: I had the T spine MRI and it showed a possible lesion, that could be artifact. Ironically enough, I had my lumber puncture today with the same radiologist who read my MRI and I got to talk to him more about what he saw. He said "well, it showed up on a few different slides so I didn't want to leave it off the report, but it wasn't like yeah, that's a lesion. So it could be, but it could not be." So, clear as mud. And the neurologist says now we are relying solely on the LP results. Question: how long does it usually take to get results from the CSF (IgG and O bands) in your experience? Obviously I'm not a very patient person. lol.

On another note: I was eating vegan for 6 days straight and my symptoms (vision and fatigue, weakness) almost went completely away. I was feeling great. Then I cheated and they came back. Coincidence? I'm not sure. But it's enough evidence for me to stick to it for a while and figure it out! I think I'm over the initial shock phase and my random emotional outbursts are fewer and further between. But I have a feeling that if I get a definitive diagnosis it'll all come back to me...and if I don't, then I'll be frustrated forever until I figure out WTF this is. Anyway, thanks for listening :)

[ksrn19]

So I had my neurologist appointment today. He said he strongly suspects MS (above 50% certainty...when pressed for specifics ;) lol. I'm going next Wednesday for the LP, labwork, and thoracic MRI. I was really upset about this initially (not sure why...my nurse friends think it's because I'm used to instant gratification being that I've only worked in inpatient settings, haha.) I've been doing a lot of investigating on diet modification and Dr. Swank and Dr. Mcdougal's research, along with other complimentary and alternative therapies. I can't help but to feel like my horrible treatment of my body (smoking, drinking, eating like crap, not exercising, etc) has led me here and something SERIOUSLY needs to change, regardless of the "official" diagnosis. I'm taking huge steps to improve myself either way. Thanks guys!

[immisceo]

Delighted to hear it! You took a great approach. Talking to people, doing something nice for yourself, providing yourself with pleasant, distracting things; these are all fantastic strategies.

[ksrn19]

The massage was great, btw. I got a 1 hr massage and a 1 hr facial. Then came home and I've been sitting in my dark apartment watching movies ever since. I feel much better now that I've calmed down. :)

[ksrn19]

Thanks again everyone. I'm so glad I didn't have to wait forever for an appointment too. I doctor shopped until I found someone who had an opening this week, lol. But I already have another appointment with the original doctor in 3 weeks, just in case.

I don't plan on saying anything about MS to the doc, although the MRI actually says MS on it, and my discharge diagnosis at the ER was MS.

I'm doing a good job of keeping myself distracted right now and I'm trying not to feel guilty about not being at work tonight. I'm so sleepy I'll probably just crash here in a few anyway. I truly appreciate all of your responses.

[HVAC]

It is all about Balance. Balancing energy against doing too much and getting fatigued. Balancing my emotions not letting the little stuff throw me for a loop. Balancing independence with asking for and receiving help. Life to me is like sailing a boat. If you go straight into the wind you stall the boat and go no where. If you turn to quickly or hard into the wind you tip over. You use the wind to move you along. You work as a team with others to keep the boat going.

At the beginning of a diagnosis of an illness few people have balance. It is something you get with practice. Today I spent 7 hours at the Cancer Hospital. I had a lot of things to overcome today. I stayed calm and loose and it all turned out okay. If I allow myself to get frustrated it can be a very unpleasant day. I have learned to relax. There is a great deal in life we have little control over. I can either get ruffled or relax. I choose now to relax. I suffered a lot when I was first diagnosed with MS because I was sweating everything. If I get out of bed today that is a really good day.

Alex

[Lulu54]

how was the massage?  I remember when I first started going steady with my M. therapist, I would be on her table and the tears would roll non-stop.  That was after my heart attack and just before the MS dx.  It sure felt good to let it all out .....

Its great you have an appointment tomorrow and not next month-
be sure to let the dr. lead with the questions. Don't volunteer that you think it is MS because that will shut it down pretty quick, especially since you are a nurse.  Give the doc your top 3 or 4 symptoms and don't include much else- there won't be time for that.

good luck -
Laura

[Jifr]

Hi there.

Awww.  I just want to give you a big hug.  I have SO been there. I was probably in denial about my diagnosis for 2 years.  lol.  And, I go into freakout mode when something new starts acting up so I COMPLETELY understand where you're coming from right now

It's hard to stop your mind from worrying when 1 - you don't have a confirmed diagnosis and  - whatever IS going on is acting up.   Uuugh.  I know it's hard but I'm glad to hear you've written your questions down and you don't have to wait months for an appointment.

I have my fingers crossed for you that you get satisfactory answers and help!

Jifr

[ksrn19]

Oh yeah definitely. My mom would kill me if I didn't let her come with me. I've written down my symptoms and timeline on my phone for the doc. Just pray for a quick diagnosis so I can start treatment!

[Corriel]

Good luck tomorrow! I hope that you can get some answers.

To answer some of your questions, I remember coming to grips with my vision issues and cognitive symptoms. My vision did return for the most part but it is usually my first symptom when I am stressed, hot or tired. Cognitive issues were horrible for me at first until I better understood what they were and how I could work around them.

If you have MS it is important to remember that it affects everyone differently but never lose hope.

One thing I would recommend given that you are on edge and experiencing cognitive difficulties is to try to bring someone with you to your appointment. That will take some pressure off of you and allow you to focus more on the appointment.

Corrie

[ksrn19]

Thanks guys...I just booked a massage and a facial with aromatherapy. Hoping this will help me "woosah." lol.

[maxthecat43]

Yeah, what Kyle said...

You're right, worrying over this excessively can bring on symptoms that are only due to stress.  But that doesn't mean that you don't have valid concerns.  Let us know what the doctor has to say.

Hang in there.
Tammy

[kwarendorf]

Deep cleansing breath...in through the nose, out through the mouth. Repeat...

Take a minute and remind yourself that the more you freak out about what's going on, the more you're going to freak out :-)

You'll have lots more info tomorrow, after you see the neuro. The more details you can fill in with fact, the less room there is for wild, scary speculation.

Keep us posted after you appointment tomorrow.

Kyle