Am i being unreasonable ???????? MS MS

[cmkkmc]

made to feel unreasonable.
I started to have symptoms of MS in 2008 , I had already had a back injury causing nerve damage and right sided weakness and heaviness in 2005 . So thought new symptoms were related to that. But, vision issues, slurred speech and heat intolerance and severe allergic reactions, sent me to my primary physician. I had a MRI and Spinal tap and had seven OB in fluid but only one large lesion. Didn't meet criteria yet for MS nuerologist said. But another Neurologist had looked at SAME MRI A MONTH LATER due to my spine injury in  2005  and said I had three at that time, and needed to start treatment asap. But after asking my neurologist she said you have one, and no need to look again. Your fine.    So 2011 MRI shows 9 lesions.
i then get started on Rebif, for three months , unable to tolerate due to chest pressure and increase in BP. So now on Copaxane.  So now I have seen a new Neuro closer to home due to driving abilities, and had to wait  9 months on for Copaxane to work.  MRI of head only shows I have 4 large lesions, but no new enchanced lesions, so i asked if that meant i only had 4 total now if so did the other five from previous MRI disappear. No one can seem to answer this question there, but found out im getting called from office assistants after 3 weeks now of waiting for MRI results. I asked if I could have someone who could answer the question for me call back. ONE week later have to call again, to have a NURSE be annoyed with me saying that we told you , that you have no new enhanced lesions that should of made you happy. I said it does make me happy , that i don't have an active lesion right this second, but i then asked again do the other ones that were on the 2011 just disappear or ?  She says i dont know and maybe your the radiologist didn't count them and it doesn't matter. I then respond how can it not matter when your telling me know that i have four large lesions, and you have no idea how many others, when I am trying to see if Copaxone is working or not. I have been to this office 3 times, with no Neurological exam yet. NO BP or WEIGHT , EVEN TAKEN.  PAID 180  on my last visit for her to sit down , look at computer and say you need an MRI i have to have that first. I am like yeah you said that last time, so shouldn't i have had one before this appointment? also on last visit, I had edema in lower legs, bladder problems all night effecting my sleep, felt sick, felt bp was up. So no BP taken, No check for Edema and referred me to a primary , who i wasn't able to get into for over a week, who then was stunned why the MS doctor couldn't run minimal a Urine tests. So, go in to get my records, so i can go to someone else, they refuse to give me all the ones i brought in from others or any that i had sent in. I explained I still hadn't got a call back for the complete answers for MRI, they nurse came out, this is a wide open office and points at me and says my name, and tells me we cant seem to make you happy, I  was like me asking two questions over a three week period and calling 4 times, to get MRI results , and having questions on what MRI were they comparing to ?  and doesn't it matter on size of lesions, or number of lesions, not just new active lesions to determine if Copaxone is working or not.?  and you all have office assistants call or people that have no clue about the results , or cant answer a question call me and  I'm unreasonable , to top it off i get paper while standing there she said you have 3 lesions just like you did in 2009 , I was like no I was told only one large by primary Nuerologist, well you had three and that's why you should have been on medicine since then. I was very upset, and found out they had no MRI from 2011 that showed 9 lesions to compare to, after I had given it to them twice. She is telling me again, we cant make you happy, I said well you could have by just answering a question, she said you want to ask question about an MRI then you have to make an appt with the Doctor ??????? oh she has one in 3 months , i was like what is going on , she said there is a lot going on around here that i cant discuss , i said apparently so , but you don't mind calling out my name, and saying about my lesions, and etc in front of the office staff two people behind in line and a full wide open doctors office, my hands were shaking and I as a full grown non crying usually women was about to have a cry, I grabbed my papers, and said well it was a simple matter of having the doctor take 5 minutes that I offered to pay her for and answer a few questions. I left. Not sure where I am going yet. BUt i am going, question so initial MS diagnosis with one lesion, other neuro said three, got dismissed by my doctor, so no MS no HELp, no TReatment, its now 2012 just completing first year of copaxone after and increase in  2011 to 9 lesions ,  now being told i had three lesions, to start with not sure if they are same size as them, doesn't matter how many i have , only if there are active to continue onto Copaxone. I am so confused and sitting here paying for and MRI and no real answers, I would be thrilled if Copaxane was working,and that my lesions had reduced down to three, but being told they dont ,has me confused. So sorry this is long, and I am running a muck, but story made full circle with leaving me in the dark and confused.

[cmkkmc]

Hi, timeline is pretty accurate, the lesions went from 9 in 2011 to 4 current, that is why i was asking what happened to others and did they just disappear or did that mean the medication is working. This is my first year of treatment, 9 months on Copaxone. Yes she is supposed to be a MS specialist. But she doesn't seem to treat anything, including a neuro exam, blood work, and cant seem to read an MRI. And if i had questions about I needed to make an appt which she is three months out.  I am seeking another doctor. But left with no answers if Copaxone is working or not, only no new active lesions, but they compared to the one in  2009 , that was a three d mri, second one was mri with contrast, current MRi with contrast.  But now there office is saying no change I only have three like the 2009 one said. which my nuero that i was seeing said one, i went back to her and said this other nuero said three, and I he needed me to know about it and start treatment, she dismissed and so nope. So i went to 2011 and then Mri showed 9.  Its late in the day, i get a little all over so please forgive me hope this answers your questions. Thanks for caring.

[cmkkmc]

Thank you all for your questions and comments and support.  The most recent MRI that the office staff called me about said I had 3 with a possible 4th, but the three were large, but it didn't matter because I had no new active lesions, they said , being a nurse one, and a office staff. Well did the other ones disappear ? was my response. That no one can answer other than I don't know. I have no answers to MRI still and told them I wouldn't be back, now though I am afraid that I won't get my Copaxone covered without the Neurologist signature but I am unable to get into another Neurologist right now it will take a minimum of two months. I would think i would at least get a letter or something, when i get my paperwork and left , got home and seen they didn't even have the MRI results in there. I'm frustrated beyond belief, I have now asked the Diagnostics place that did the MRI if they could look at original in 09 that was my Neuro at time said ONE large lesions, but one month later another Neuro told me three,  then the one for 2011 showed 9 lesions, now recent shows 3-4 large lesions, and the my current Nuero who said doesn't matter they don't need to count only matters no new lesions. So they has a favor to aren't supposed to read, but can compare? so interested in seeing what that says.  Since this happened i looked up the my current Neuro and the ratings on her are bad, the biggest complaints surprisingly seem to match mine, she cant read an MRI, no help with explanation, no time spent, no neuro exam, so you are probably right in the fact that they are getting sued,  they also did break HIPPA rules i would believe, I left a voicemail, and hoping to hear back from someone about that. I am not much of a fighter usually or trouble maker so not a comfortable position to be in. But I believe that if i don't do something then this will be the next person. I appreciate the kind words and support and I have moved on hopefully soon to another nuero, I just hope soon.  I will give an update. thanks for listening,,,glad its not me being unreasonable...

[LilMinnie]

I don't think you're being unreasonable at all.

I believe they did some serious HIPAA violation when your name was spoken in public like that.

I so hate confrontation and can never think of the right thing to say until later.

It may be time to find another neuro. While no one was outright rude to me, someone else's information was entered into my file and on my first visit I was totally dismissed, like I was wasting his time. After some abnormal test results he was better, but by then I already had another neuro lined up.

Best of luck to you. I do understand and don't think your questions were unreasonable at all.

Hugs,
Minnie :)

[Beverwick]

I share your frustration. Drs offices can be very hard to deal with, rude insensitive etc and usually they have been given instructions to "shield" the dr putting them in very uncomfortable positions in order to keep their jobs. I  could give you numerous true stories that would illustrate this point. Not that I excuse their behavior because it causes so much emotional stress to the patients like yourself who are just asking for clear information. It feels like this neuro's office is going thru something such as a law suit or similar thing and they will continue to pass along their anger over their situation to anyone who appears to them to be rocking the boat.

Do you have someone who can intervene for you? For some reason my husband can get all kinds of things done when dealing with power-hungry professionals than I can. It is so hard to remain calm and unemotional when it's your health at issue.

[kwarendorf]

Hi - I know that all of this can be very confusing. That's why I try to write everything down.

I want to makes sure I have your timeline correct.

In 2008/9 you had an MRI and a spinal tap. According to your primary care doc you had only one lesion but did have 7 o-bands in your spinal fluid that did not appear in your blood (serum) A month later a neurologist looked at the same MRI and found 3 lesions.

In 2011 you had another MRI which showed 9 lesions. You then switched neurologists and the new on found only 4 lesions.

You have been on one treatment or another since 2011.

I'm not sure when your lesion count went from 9 back down to 4.

I have some questions. Were the MRI's of both your head and your neck? Were they done with and without contrast?

Are any of the doctors you are seeing MS specialists?

Kyle