08/16
Thanks for thinking of me! I just posted an update - good news!!
04/16
Definitely OK to pack up the winter garb!! I'm struggling along over here. I don't post too much as I feel all I have is a pile o'negativity right now. Not helpful for ANYONE. Drop me a line & let me know how you are doing. I've been thinking about you.
02/16
You deserve a big bear hug! :)
01/16
Just thinking of you, Karen.
11/15
Just a quick note to say hi! I am okay. Fighting with the insurance for a pain medication. I hope you are well.
01/15
You deserve a big bear hug! Thank you for your sweet note. You made me smile. I will definitely email you! Our journey seems very similar in many aspects. I apologize for my very down tone in my last post. This daily struggle, as you know is a downer. We will chat soon. Hope u had a good day. I prayed you did.
01/15
Thank you for your kind words, Karen.
01/15
I sure felt like I lived n Rochester in Oct-Nov. I am in Lakeville (south metro). It only takes about an hour to get to Rochester from my house. Nice to be able to drive there and not stay overnight.
01/15
Hi Karen,
So frustrating about your tests! UGH! I know what you mean about Rochester. I started to feel the same way...at least it is a nice town to visit. I will continue to pray for answers for you. Hopefully the next set of docs that you see will be able to hone in on something concrete. I certainly don't wish for you or anyone to have MS; I DO wish for you to have some answers and to be able to start healing! Thinking of you today.
Cheryl
01/15
Just a quick note to say hi! I've sent you a few notes but don't know if you have gotten them want to know what's going on with your balance I have been diagnosed with a syndrome called Mel de Debarqument syndrome it has to do with something that happen s to you when in motion most times it's a boat but can happen being a passenger in a car of plane ride train it was brought up to me in August but first dismissed because I hadn't been on a boat but you don't have to have been I have all the symptoms and feel fine when I'm driving the car. There is a support group if you type I the syndrome its a closed group Helping me a lot to deal with this Let me know if you join people that really understand with your feeling Diane
01/15
A word of advice on the Somatosensory -- don't pick at the extra glue that doesn't come off your head! It hurts...and washes out really easily.
So frustrating for you! Fingers crossed that you come up with some answers soon.
I still deal with tingling, headaches & random eye problems. My hubby thinks it is all stress-induced. Completely possible. I think I need to add a psychologist to my list of doctors!! LOL Seriously, 2015 is the year I need to learn how to manage stress in a productive way. I'm not so good at it...
Keep us posted on how you are doing. You have been in my prayers & thoughts so I wanted to reach out.
Cheryl
01/15
Happy new year! I didn't see that you posted any results from your Lumbar Puncture, so I'm assuming inconclusive? Have you had any success with identifying what is going on with you? Just thinking of you on this ridiculously cold day...
Cheryl
12/14
I found it took ~3 days to see the radiology reports. And of course, it is only the radiologist interpretation -- your neurologist will review & analyze the results as well. I only met with the neurologist once as well. I was down there so many times for tests, tests, tests. I really appreciated being able to just connect via telephone! If it is indeed MS, there appear to be many new drugs available now which can really slow down the progression. Regardless, once you know for sure what is causing all of your problems, it will be so much easier to deal with. It is incredibly scary to see such big changes and to not know why. My kids are BEGGING for snow, too!! Have a Merry Christmas with your family!
12/14
Hi there,
I'm so sorry you didn't leave Rochester w answers, but it sounds like you are on the right path. Will keep praying that they get to the root cause and can help to restore your mobility. That is so scary!
You can retrieve all your radiology reports online. It takes a few days, but your doctors notes and MRI/XRay results will be available for you to read. I found that really helpful.
I'm doing fine. Seems as if whatever happened has taken a break. I worry it will return even worse as that is what happened last time, but for now, there is nothing I can do except wait and pray it was a fluke.
Thinking of you!! Stay strong.
12/14
Thinking of you & hoping you got some answers yesterday @ Mayo.
12/14
Hi there!
I hope you had a wonderful (albeit it FREEZING) Thanksgiving. Good luck at the Mayo. I found all of the doctors that I have seen there to be incredibly supportive. I wish you the best -- let me know how your appointment goes.
For me, there are not enough visible symptoms to continue doctoring. It will either clear up or come back. Either way, I have to wait to know for sure :). I am HORRIBLE at being patient, but I am also exhausted from all the testing. I still have tons of weird neurological things that come & go, but they fall under the "annoying" bucket & are not really impacting my daily activities.
I will keep you in my prayers for some answers next week. So glad you got into Mayo - it really is a fantastic, caring place to be seen.
11/14
Just a quick note to say hi! I got the best news from my Doctor today. I do not have breast cancer. What a time this has been for myself and my friends and family. Going to start some pt for balance and walking I haven't done any I know you said you have has it helped you any. I just keep praying this will end for both of us soon. Tak care. Diane
11/14
Just a quick note to say hi! Here comes winter, thanks for the note I'm still trying to figure out what's wrong with me. It wasn't the medicine. I face a new challenge my mammogram showed a lump. It's not a cyst. I have a biopsy this coming Monday. My mom died from breast cancer. She first got it at 47 my 1st cousin also had it and my aunt very scared didn't expect this Didn't feel it. Hoping and praying for the best. Diane
11/14
We are getting freezing rain, so the roads are horrible! Ugh.
Your story sounds very much like mine. I have been doctoring @ Mayo and have also declined the lumbar puncture thus far. I really feel like it can't be MS, but there is definitely something going on. Let's stay in touch. I'd be happy to support you through this & would love some encouragement as well. The tests are draining & my symptoms are so vague now that my eye problems have cleared up. It makes me feel like I'm chasing a ghost...
Stay safe & warm over there. So early to start the school closings again this year!!
Cheryl
11/14
Hello fellow Minne-snow-tan! I understand you got quite a bit of snow - my husband is traveling back from deer season & will go right through it all. I'm in the South Metro, and we have a VERY disappointing dusting with some ice. Poor kiddos are crushed.
How long have you been in limbo? I really just started this trek in September, but am already tired of tests. Frankly, I'd like to pretend like none of this has happened & just go back to "normal", whatever that was! haha!
Thanks for reaching out.
Cheryl
10/14
Just a quick note to say hi! Hope your week as been a good one! I was showing a client this site the other day encouraging her to write about what was going on ( a 14 son who is acting out more then what's for a better word normal) It felt so good to help someone else we all have so much going on these days in this world. I'm hanging in there
10/14
Hope you feel better soon! So great to here from you . Boy do I know about trying to stay positive I'm so frustrated I have to fight hard everyday to keep going. So everything has not cleared up Ike I hoped for. I am improving my balance is much better I still have a swaying feeling and lightheaded by the afternoon everything starts to get worst. So I saw the neurologist on Thursday he said my MRI is not normal but still in a normal range for being abnormal #!"!?; not enough symptoms to tell what's wrong with me going off the Cymbalta helped some with side effects he wants to do another MRI in a year to see what changes if any are there he told me I need to try and treat the symptoms the best I can see my Doc next weds . Glad I have you as a friend . Diane
09/14
Just a quick note to say hi! After I sent you my note earlier tonight it just came to me that today is weds day not Thursday hope your app goes well tomorrow Lol.
09/14
Hope you feel better soon! So hope your doing okay been thinking about your app. Today at dizzy and balance center would really like to hear what you found out. I'm hangin in there going off the Cymbalta has been hard I have been taking it every other day it has a antidepressant init so going off has me a mess started crying in front of my client today not my best moment just hope she likes her haircut!! Also just wanted to say sounds like you have a very special husband by your side and I'm glad you have him to whole your hand . Take care...diane
09/14
Just a quick note to say hi! I wrote to much so the long note was suppose to be first Lol
09/14
Just a quick note to say hi!
09/14
Just a quick note to say hi! Want to know how your doing feels like we're friends and I hope you get some answers soon I hope there on the right track with me .i want for you to get to enjoy your life again with you friends and family the holidays dill be there soon I want them to be happy times Diane
09/14
Just a quick note to say hi! Oh my goodness the meds are making a big differenence . My dr also took me off of Cymbalta . I started taking it in mid June and my symptoms got really bad in the end of July And I also think the Cymbalta made things worse for me . So I'm left to wonder what has really happen to me Have I had this infection since last dec starting my balance problems and did the Cymbalta just make things worse when it reached its full effect in my body? I see the neurologist on October 1st interested to hear what he thinks . I was able to get around without my cane most of today. I feel like I'm coming back from some kind of very long nightmare .hope I keep getting better. So wishyou are getting some answers Hope you hair turned out GREAT ..
09/14
Hope you had a great hair app.
