I'm back from the ER

[addicted2harleys]

FIrst of all I want to thank you all from my whole heart for being with you in the time of need for me.  It truly means a lot to me and really healped in guiding me and keeping me on track of what I want to accompluish here.  

I am also sorry that I haven't been reading or responding to any og the other posts, but I honestly have not had the brain to do it or the energy.  So, I hope all are doing well and those going through any issues, I send warm hugs and healing power to you.

I did go to Santa Barbara ER yesterday.  I got home around 3 this am.  I took the new medical record book that I had just finished with me.  I found out about doing this in the Health Pages, thank you very much!  I don't think I would have been taken seriously if I didn't have it.  I usually just take a copy of my meds with me.  The doctor actually took my book and looked through it.  She was able to see the doctor reports for all past MRI's and the ER visit I had last week and thr ophtho visit I had the other day, as I had requested copies of my visits at the time of my visits.  So this was so beneficial, I think.  BTW, I already have copies of all tests done and doctor notes from yesterdays visit, too, as I requested copies when I was leaving.

I didn't have a TA   They did blood work, urine test, Cat Scan, Ultasound on my carotid / neck.  And an EKG...all normal findings.  So, that was a relief as a few people pushed me to have this checked.  I am glad they did.  And, now I know it was due to my neuro issues, too.

I have had skin sensitivity for the past year now.  My daughter gives me gentle hugs now because of this and is real careful how she touches me.  I hadn't really realized that this had intensified until everyon in the ER was poking and prodded me.  The blood pressure cuff hurt!  Even though I am petrified of needles, getting blood doesn't really hurt beyond the initial *****.  Yesterday the IV hurt the whole time it was in my hand.  And it was preety painful tohave it put in, too.  And the thing they tighten on your arm hurt like h e l l.  My nurse felt so bad.  Then, my veins wouldn't cooperate and it took 4 times.  ;0(  She was really nice though and even brough tmy mom and me a little meal package around 11 pm.

I did get IV Solumedrol (1000 mg).  I was told to call my neuro first this this morning for further Sulumedrol treatment.  Not having a choice, I did call my boot strap neuro about 1/2 hour ago and left detailed message on viocemail.  If I don't hear anything by noon, I will try again and last resport, call my primary.  The ER doc did try to call neuro last night, but talked to someone else who was on call for him.

All in all, I think I did the right thing.  I feel pretty derned drained and I am seeing a lot of squigglies telling me to spell check, but I don't feel like it....not worth the effort.  My mind feels like it is misfiring and slow since the eye incident a few days ago.

I think I am having a few side effects.  I have a headach and little tremors when I try to handle things with my hands.  I had a gross taste in my mouth, but my coffee tatstes fine right now, so I think that is gone.  I can't believe I am going to say this but last night I had a bowel accident in my bed (never done this before).  I am usually constipated.  I didn't sleep well...I woke up at bottom of bed, which is quite a talent since I have a hosp bed and the head was raised.  I also only slept for about 2 1/2 hours.

This is the strongest Solumedrol I have ever taken.  My last exacerbation, I only had 500 mg, 5 days shots in butt.  So, are these normal side efeects?  Also, last time it seemed to feel a little better every day.  I felt like it was a miracle drug.  I am not much feeling better yet, so am I asking for too much too soon?

Since I didn't get MRI last night, is the Solumedrol going to effect any results if I still push on getting new films done now?  My plan had been to have primary refer me for MRI in Santana Barbara (on 3T) on Monday when he gets back from vacation.  Should I keep to this plan now or call today for the referral?  Or is it too late?

I am sorry that I can't seem to write short posts.  ;0/  I really do have the intetnions to.  ANd, I am happy to report that my daughter had a chocolate cake waiting for me when I got home.  Yum yum!

On that note, I am going to crawl back in bad for a little while and give my daddy a call.  He lives like 2 hours from me, but I haven't seen him in severals month.  I have only known him for 10 years now, but we got close instantly and still are.  Was suppose to go  stay a week with him beginning of June...but obviously it was posponed.  I want my daddy!  So, I am gonna see if he will come see me...

Hugs to all,
Addi

Hugs to all,
Addi

[addicted2harleys]

Thank you, louey.  I am really appreciated the message.  You made me smile.

I hope all is well with you...

Addi

[addicted2harleys]

Thanks, you all.  I really appreciate your support.  I laid down for a while, which I think I needed.  But, I didn't sleep...just zoned on Animal Planet.  lol

My neuro hasn't been in touch yet, though I did have a really nice talk to his nurse.  She explained a lot to me and I was thinking I might give him another try.  She put out a message to him first thing this am but he has not gotten back to her yet.  I did make an appointment for Sept. with him to try and see if he is right for me and try to make a treatment plan.  But in the here and now...do I need another Solumedrol treatment??  It is Friday 2:30...I kinda feel like I need an answer now.  Am I wrong?  I just called neuro nurse back and she has still not heard back from doc...told me to call primary.  I did and am waiting for callback (they are good about it).

In the meantime, I made some calls regarding the 3T MRI I want done.  I was able to get the info needed from the place that has it in Santa Barbara...again, very nice woman.  She did tell me I would be able to get the test done there with referral from my primary...and they use MS protocols.  She also told me their machine are up to date with latest technology and is much better for what I need compared to the machine I have used for the past two years...she knew where I was referring to.  (Thanks, Ren)  Also, primary is working on getting me to UCLA.

Jess-I will remember the life savers.   Thanks for the tip.  I always have dry mouth (side effect of other med) so....I was already thirsty.  lol  The headache is still there.  I will take some tylenol.  Thanks again and hugs.

Thanks for the feedback, Kristi and siv...I was thinking I needed more treatment, too...even if it mean another needle.  That is why I am trying to find out who, where, what and why?  lol  So, can you get one IV treatment and then wait 3 days and get another?  That is what I don't understand.

I talked to my daddy, too.  ;0)  He was out running errands when I called so he is gonna call back this evening.  I do love him so much.  Thank you all for the kind words.

Thank you Sarah.  Your words touched me.  Big hugs back...you, too, Lois!

Primary nurse just called back...she is calling neuro to get some answers.  Will call me back.

Addi

[Celery47]

Hi there Addi,

I'm so sorry to hear about all of this!  Sounds like you're doing a bang-up job looking after yourself and your healthcare, though, and I really hope they sort this out soon.  And it's so nice to hear about your dad - I hope you get to visit him soon too!  And your daughter, too (that is so sweet!).  I guess really I just wanted to wish you well, and send you a big hug :)

My best to you -

Louey

[jensequitur]

The Solumedrol IV is supposed to reduce inflammation.  But an MRI will still show lesions in your brain, even if the T2 doesn't make them pop.

[Sparkysarah]

Hi Addi

Not sure what to say except I was really moved by your post and your honesty. You are one strong lady and hurragh for daughters and chocolate cake

I am so glad that you found your Dad ten years ago and hope that you are able to see him soon. Take care and let the family make a fuss of you as you really deserve it.

Love, smiles and big hugs

Sarah xxxxx :) :) :) :) :)

[siv1]

Hi,
Glad things went well.
Hope you get visit from your Dad for fathers day.

I read everything and only thing i can remember is about IV. I am still on tapering off. The metal taste is awful and i had it for 4 days.

[starryeyes1]

I'm sorry that you are going thru this. I had to go on the Solumedrol recently for vertigo. It was 3 days of IV fluids. I had an aweful taste in my mouth from it and couldnt eat for several days but it got rid of the vertigo.

It took until the 2nd day of IV meds before I noticed a difference. It took several days later to fully be rid of the vertigo, so give it some time.

Definately push forward for the MRI's. I hope you get to spend some time with your father. Family is so important.
Take care and let us know how you are doing.

Kristi

[lovemy6monkeys]

Addi,

I'm so glad you went to the ER but I'm so sorry you are still feeling badly :-(

I can't answer most of your questions, but I can tell you that I had the yucky taste during the IV solumedrol too. My neuro's office (they have an infusion center at the office) gives lifesavers/mints to suck on while you get the IV. I get a metallic taste. It does go away after a bit. But I was also very thirsty, drank ice water like crazy! I also get a really bad headache from the IV. There is a medicine they can give you (either in your IV or in pill form). I tried the IV one once and it did not do much, helped for a couple hours. The pill one my insurance needed "prior authorization" so I actually never tried it. The IV med starts with a D, but I can't remember the name...hopefully someone else knows what I mean? I did end up just using over the counter Tylenol Headache Formula (actually the generic form) and it worked very well.

I hope you hear from your doctor and get a treatment plan workout out.

((hugs)) my friend.
~Jess

[RedFlame]

Hi Addi, Hey don’t worry about not posting on other threads---that’s not important.  I am so glad that you were able to get some help at the ER.  Also, you can go back there if need be so you won’t get blown off.

It sounds like the visit went really well and you even were able to get some Solumedrol!  Now you know that what you are experiencing is from your neurological diseases too.  It took a lot of energy to arrange all of that but you did!  Whew

As far as your current Nuero, it should at least make him either see you or finally do something worthwhile for you.  

Get some rest,    lois