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Posted 8/14/2007 11:58 AM (GMT 0)

Yesterday at a routine follow-up appointment, my neuro decided that he doesn’t think I have ms after all and took me off all of my meds, including Copaxone and symptom meds. This is the guy that originally put me on Copaxone, and strongly agreed with the findings at the Mayo Clinic, namely that a demylinating lesion in my left cerebellar region was causing my vertigo, gait probs, and weakness and incoordination on the left side of my body. By the time I saw this neuro the first time, he felt that this (CIS) had turned into ms, and after another “flare” (or something) which produced new abnormalities in my clinical exam, put me on Copaxone.

 

He didn’t examine me at all yesterday. He thought I might be a bit depressed and that is causing all these issues, although did admit that a lot of the symptoms and abnormal clinical exam responses I experience can’t be explained away by depression. I asked him if taking me off wellbutrin (originally prescribed for “energy) was a good idea if I am as depressed as he claims. He said that he’s not sure I am even depressed at all, so he is fine with it, and then sent me on my merry way. He does want me to go get some further testing, but I think at this point I’ve pretty much had it. This caught me totally off-guard and I am still reeling from it. I think it’s time for me to try and forget about this stuff as much as possible, so I don’t know how much I will be around. I feel really bad that I gave you all the impression that I had ms…I just thought that I did. I just want thank everyone! You have all been so supportive and caring, and I appreciate that so so much!

I wish you all the very best,

Sunny

Posted 8/14/2007 12:54 PM (GMT 0)
Sunny,

Please don't say goodbye. You have been such a help to me and others. You need to remember, as we have seen time and time again on this site, MS is sneaky. I hope you really don't have it, but I believe you have symptoms. We can still support you, and you are a great support to us. If you don't remember, I have been ill for close to twenty years, my dx went from possibly lupus, to seronegative lupus, to fibromyalgia and now MS. My neuro says it could have been MS all along. I know how hard it is when a doctor tells you all the test are negative, go home and relax, and do something fun. I am sorry you are going through this right now, and I for one would like to support you.

I need your input to get me through. Please stick around. Know we care and are here to listen to you.

Hugs,
Debbie
Posted 8/14/2007 3:15 PM (GMT 0)
SUNNY!!!!

GET U"R END BACK HERE!!!! No!! U'r not leavng here just yet. U have so much to be here for and so much to sort thru WITH US...and we need u so much! Don't let this stupid doc lead u around...u'r not crazy and u can't just throw in the towel! There is clearly something wrong and u have to get the med's and help u need...but not from this doc. See another and another until u can get some resolve on this...but don't give up and let him win with u'r health. U've been SO SO SO MUCH here to all of us already...don't u even start to think u'r going to get to just leave like this. I want u to stay for so many reasons, but the most important is that i want to see u get the help u'r going to need..and for us to get to be there and offer that help. The most selfish reason is that i want u here. U'r such a sweet person and so giving...i know everyone here has gained from u...i have...and it hasn't gone unnoticed. Please just don't do this now. Stay and let us give back to u a little now. We need u and right now that means we need u to stay.
Posted 8/14/2007 5:26 PM (GMT 0)
This is from Gretchen:

Don't leave and don't let this sway u from what u know u need to do. Take care of u'rself and get to the ms specialist! Don't leave HW either! U don't have to have a dx to be here...u just have to be here. Lot's of people are in limbo and they help and get help here...and u'r needed and wanted here...so please don't leave.

She will be on here later to talk to u herself.

Also...she was rambling at the end of that something about 'rhonda doesn't have worms and i do"??? Not sure what all that was about, but u know when u get senile u just spurt out truths! Maybe she just finally let that all out and i hope she's feeling a measure of relief.

Have some fun Sunny!! Laugh all u can and live life fully...and take care of u'rself friend.
Posted 8/14/2007 6:48 PM (GMT 0)
R -- You need to find another doctor!!! I just want to acknowledge publicly how much your support and encouragement has meant to me over the past several weeks. Please hang in there.
Posted 8/14/2007 6:55 PM (GMT 0)
Sunny, give yourself some time to adjust to this.  Take a break from the forum if you need to but please remember that you have a tremendous source of support here, MS or not, as you can see.  I can understand your feelings of frustration and wanting to call it quits but I hope after you think on a bit you'll see that doing that isn't going to fix what's going on with you.  You are stronger than you think you are, you can get through this and we'll be here to help you. 

 

Lots of hugs,

Kimber

 

 

Posted 8/14/2007 7:55 PM (GMT 0)
Sunny, I wouldn't give up.  You need to talk to the original docs at the Mayo clinic and let them know what this neuro has decided.  It really doesn't make sense at all.  Sounds like he has been going thru some legal troubles or something and doesn't want to get into more trouble by mis-diagnosing you! He sounds like an idiot.   I agree with the other folks on here, you have given us all alot of input and a caring shoulder.  I know your head must be spinning with that news but rest assured we will all be here for you whatever may come your way!    
Posted 8/14/2007 8:28 PM (GMT 0)
Sunny -
Congrats on the new findings, but I as well as everyone else am a bit leary of your doc's 'fly by night' decision. Maybe if he/she sat down with you and could give you some type of answer on the possible root causes of the things that ARE going wrong, then maybe I would be over jublient (is that a word?) and tell you go girl! But since he really has no other explanation for these things, I would go see an MS speciailist like Rhonda suggested. I know you are probably so tired of the whole dr scene, believe me, I completely understand... I'm so sick of dr's, I haven't even made my yearly pap appt yet and last year I had a lump! Yes, I know... Stupid me.. I'm just so tired of doctors...

I understand and everyone would LOVE to hear 'you don't have MS, it's this.....' I know I loved hearing those words, but please get into an MS spec and see what he/she says then maybe you can celebrate. Or if you have already seen one and they didn't think you had MS at that time, if it has been a while, go back to them and get a follow up opinion..

Good Luck Girlie
Posted 8/15/2007 3:47 AM (GMT 0)

Oh Sunny,

I know you are so frustrated and discouraged.  Hang in there girl.  You cannot leave.  I simply won't let you.  Not only are you so incredibly loved here, you have been a huge support to us too.  I cannot imagine HW without you.  So, selfishly I am not going to let you go.  Take a break if you want but I need you here.  We love you and want you to stay.  I will come up there and help with this or the big pond project, just let me know. 

I will leave the worms at home. I actually don't have worms, rhonda does.  But I can bring some for your garden.  I love you, sunny.  Take really good care and know that we all need you here at HW. 

love and prayers

Posted 8/15/2007 10:16 AM (GMT 0)
I hope you stay Sunny, as you can see everyone here cares about you and wants to be there for you.  It's hard to find support like that from people who are in the same boat.  You've built relationships here :-)

Let us know you are staying?

Shar

Posted 8/15/2007 7:45 PM (GMT 0)

Thank you all for such kind words of support and encouragement. They really mean a lot to me.

 

Posted 8/16/2007 1:10 AM (GMT 0)
Hey Sunny,
Please don't go......where have I heard that change of diagnosis before???? These Neuro's are amazing how they can turn their diagnosis around in a split second. So far I have had 3 diagnoses of MS and now 2 of high blood pressure causing my brain lesions, that's 2 flips of the coin in less than one week. Good grief!
Don't give up, lots of us are still on that "never-land limbo train"...we need all the passengers we can get so we don't throw in the towel and jump off!
I can hardly believe he took you off all your meds cold turkey like that, what, does he think.... all your symptoms will just disappear?
Your symptoms caused solely by depression...I think not. I have depression and it doesn't cross over and cause MS symptoms as far as I know. MS on the other hand can make anyone very depressed! Putting up with crappy symptoms on a 24 hour basis, is it any wonder! Then he has the nerve to say he is not even sure you have Depression? Did he go to Uni with my Neuro? It sounds like they both have diagnosis disease. As my Doc said, time for my Neuro to go have an MRI and a spinal tap!! I think they have both lost the plot!

What a terrible thing to do to you. Last week I was just shoved out the door, no examination nothing, with a see you next May 2008, however like you, some more tests ahead. It is good that you were first diagnosed by the Mayo Clinic. I found their site great.
(I'm an Aussie, but please don't hold that against me lol!) and I went armed with their list of symptoms all printed out from their site and when he said it was blood pressure I was gob smacked as he had told my Doc it was MS on the phone...I was sitting there listening to her.
I just dropped my bundle and didn't show him...they don't like to be told their job do they?

Reading everyone's post here you would be really missed, it is obvious your support has meant so much to so many...please don't leave us all stuck on the train without you....

Hugs to you and hang in there,

Cocoa
Posted 8/16/2007 8:53 PM (GMT 0)
Sunny,
Don't go........We love you here. We need you. You are such a great support for all of us here. I am happy for you b/c they are saying no to the MS but do not stop looking for answers to this. I can not believe they stopped all your meds either. I'm with michelle when she said to go back to the Mayo Clinic
and see what they say. My goodness, wow. Please stay with us, if anything to just be friends, we love ya.
Take care Sunny and i hope to talk to you soon,
Love and Prayers,
Lynn
Posted 1/3/2008 8:07 AM (GMT 0)
Wow Sunny,

No wonder your still posting. You've found an awesome group of people here and it's pretty plain that they see you as one for sure!

<can stop laffing at cocoa, lol. the part where she asks, they dont like to be asked their jobs do they?

they also dont like to find out you have a computer haha.....or a list of questions on your hand in INK pffft.


Sunny,
I'm glad you stayed!

Cocoa?
Your wonderful as far as attitude and humor! Hope to meet you-

thanks
kiera
Posted 1/3/2008 7:56 PM (GMT 0)

Hi there, did any one ever have contact with Sunny - I see the last contact on this thread was in August 2007, other than Kiera which was today.

I was wondering how this person is doing, and if they (the professionals) were able to come up with another dx, seeing that they decided that MS was not the culprit. This really seems to be to the extreme, dx MS, start the Copaxone medication, and then say no and stop it???? Wow.

Cheers,

Gary

Posted 1/3/2008 9:30 PM (GMT 0)

Hey Gary,

Yeah we all hear from Sunny from time to time.  She is hanging in there.  I am sure she will be along soon to elaborate.  She does not go back to her Neuro until February.  She is a pillar.  She is very strong and copes really well despite being plagued by squirrels and pestered by Rhonda and myself.  Shar is actually nice to her and that is probably a good thing.  Hehe.

You are so kind to ask.

Love and prayers,

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