Blessed4Life
01-14-2008, 09:39 PM
Well, I saw my neuro today. The hour I waited in the waiting room, I was praying that my symptoms wouldn' suddenly stop making me feel and sound like a crazy women. Well, they showed up for the appointment...numbness, vibrating, muscle spasms and jerks. So anyway, I go back and we sit down. She goes over the bloodwork I had done at my last appt and found that it was normal. I then asked her again about the MRI I had a couple years ago but never got a definitive answer on the results. She still didn't have them, but had the report faxed over. It was done only without contrast and was "negative". Anyway, she accepted that as if there was nothing left to do in that regard and looked at my journal of symptoms. She looked lost. She kept say the journal was good but didn't give me any answers. She seemed lost and said so. She then went to talk to her attending. At this point she has not put one hand on me. She comes back to say the attending was gone for the day and she didn't know what do next.
That is when I had to let her have it! I told her that I was very offended that i have been coming to this office for two years now and I have not learned anything new. My MRI is from 2005 and she doesn't think it necessary to do another. Oh, yeah, prior to my blowup she indicated that the symptoms might be "benign" and nothing to worry about. I asked her how many 35 year olds have been suffering from progressively worse/new symptoms since 2003 should just accept it without question or need for aggressive action. She finally came clean and said she as clueless. I told her I think I have MS and she said doesn't think so, but would refer me to a neuromuscular specialist. I am being referred for the evoked potentials tests. She said that it should show there is nothing serious to worry about. I just wanted to scream! Once I can go a month without an abnormal activities in my body, then I'll know it not serious. She mentioned that it may be systemic. Since I also see a rheumotologist (I see him next week) who thinks it may be Lupus, I am going to share with him what she said.
No diagnosis, but more tests. Michellle
That is when I had to let her have it! I told her that I was very offended that i have been coming to this office for two years now and I have not learned anything new. My MRI is from 2005 and she doesn't think it necessary to do another. Oh, yeah, prior to my blowup she indicated that the symptoms might be "benign" and nothing to worry about. I asked her how many 35 year olds have been suffering from progressively worse/new symptoms since 2003 should just accept it without question or need for aggressive action. She finally came clean and said she as clueless. I told her I think I have MS and she said doesn't think so, but would refer me to a neuromuscular specialist. I am being referred for the evoked potentials tests. She said that it should show there is nothing serious to worry about. I just wanted to scream! Once I can go a month without an abnormal activities in my body, then I'll know it not serious. She mentioned that it may be systemic. Since I also see a rheumotologist (I see him next week) who thinks it may be Lupus, I am going to share with him what she said.
No diagnosis, but more tests. Michellle
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MSNik
01-14-2008, 10:13 PM
OH Michelle...how sorry I am for your frustration. You sound so upset, Im upset for you..
Have you considered seeing another Neuro or even an MS SPecialist? Is it possible, in your situation to change doctors? I mean seriously, your symtoms are screaming "something is wrong" and yet this person who calls herself a doctor, isnt doing much at all...
On the other hand, evoked potentials MIGHT show something. Others on this board have been dx with just those results...and seeing another doctor is definately in your favor...but in the meantime, can you find someone else to see? Evoked Potentials are an interesting test..they can say absolutely NOTHING or something....
Another thought, have you seen a good opthamologist lately? Only ask because Optical Neuritis is another way of looking for MS...it might do you good just to have a good eye exam and see what another type of doctor says...are you having any eye issues at all?
Im really sorry for your news....it had to be depressing to hear that...but if nothing else, I think you can seriously write this doc off as one of the bad ones and start looking elsewhere...there HAS to be answers.
Hugs to you...and your in my prayers.
Nikki
Have you considered seeing another Neuro or even an MS SPecialist? Is it possible, in your situation to change doctors? I mean seriously, your symtoms are screaming "something is wrong" and yet this person who calls herself a doctor, isnt doing much at all...
On the other hand, evoked potentials MIGHT show something. Others on this board have been dx with just those results...and seeing another doctor is definately in your favor...but in the meantime, can you find someone else to see? Evoked Potentials are an interesting test..they can say absolutely NOTHING or something....
Another thought, have you seen a good opthamologist lately? Only ask because Optical Neuritis is another way of looking for MS...it might do you good just to have a good eye exam and see what another type of doctor says...are you having any eye issues at all?
Im really sorry for your news....it had to be depressing to hear that...but if nothing else, I think you can seriously write this doc off as one of the bad ones and start looking elsewhere...there HAS to be answers.
Hugs to you...and your in my prayers.
Nikki
cindys601
01-14-2008, 10:25 PM
Hi Michelle~
I definately know how your feeling because I'm right there along with you. Searching and not finding. And I feal your frustration. As the appointments get close, theres a sense that "maybe" this will be the time I'll get somewhere. When you walk out, knowing nothing more than when you went in, just feeling more frustrated, It is very discouraging.
Nikki is right, maybe you need to head in a different direction, a different dr. Sometimes, a new dr might just hit on it!!
Keep searching Michelle!! Good luck and I'm rooting for you!!
Cindy
I definately know how your feeling because I'm right there along with you. Searching and not finding. And I feal your frustration. As the appointments get close, theres a sense that "maybe" this will be the time I'll get somewhere. When you walk out, knowing nothing more than when you went in, just feeling more frustrated, It is very discouraging.
Nikki is right, maybe you need to head in a different direction, a different dr. Sometimes, a new dr might just hit on it!!
Keep searching Michelle!! Good luck and I'm rooting for you!!
Cindy
glamour girl
01-15-2008, 07:49 AM
Michelle
You poor thing.. How upsetting for you not to have some answers.
Glad you let her have it. Sometimes to have to show your teeth to get noticed.
Good to hear your seeing someone else. Hopefully you'll get the care you need to find those answers. Something is defintly going on with you.
Good luck, Hope it goes well. Take care
You poor thing.. How upsetting for you not to have some answers.
Glad you let her have it. Sometimes to have to show your teeth to get noticed.
Good to hear your seeing someone else. Hopefully you'll get the care you need to find those answers. Something is defintly going on with you.
Good luck, Hope it goes well. Take care
muddie555
01-15-2008, 02:26 PM
How horrible to be in limbo like this Michelle.
I was dx with evoked potentials, physical exam and detailed history, told them what they could do with the lumbar puncture!
I had stuff going on for years but every time I decided to see the doctor the symptoms went away, or changed. I was finally diagnosed 10 years ago and the doctors think I may have had ms since my teens - 30 years!
Keep pushing, you need to know, good luck.
I was dx with evoked potentials, physical exam and detailed history, told them what they could do with the lumbar puncture!
I had stuff going on for years but every time I decided to see the doctor the symptoms went away, or changed. I was finally diagnosed 10 years ago and the doctors think I may have had ms since my teens - 30 years!
Keep pushing, you need to know, good luck.
duttin
01-15-2008, 03:13 PM
Michelle,
Sweetie I Am So Proud Of You,finally After All This Time You Finally Stood Up For Yourself.
The Evoked Potentials Which Ones Are You Having?when?
When Do You See A Neuromuscular Dr. I Must Say My Best Neurological Exam Has Been Done By A Neuromuscular Dr.
You Don't Need A Neurologist To Dx Ms, A Neuromuscular Dr Can.
When You See The New Dr You Can Ask That Dr For New Mri's,when Neurological Symptoms Repeat Themselves A New Mri Should Be Done With And Without Contrast.
I Was Dx'd With The Evoked Potentials,brain Atrophy And High Basic Myelin Protein From The Lp.
You Stood Your Grounds And I Am Astounded That This Dr Didn't Know What To Do,gees How About A Full Neuro Exam That Would Of Been A Start.
This Can Be Looked At As A New Beginning,with New Drs And A Whole Set Of Test That Should Of Been Done A Few Years Back.
I Know You Are Still Not Diagnosed,but Test Are Starting To Be Done.
We Will Be Here For You Through This Journey.
T
Sweetie I Am So Proud Of You,finally After All This Time You Finally Stood Up For Yourself.
The Evoked Potentials Which Ones Are You Having?when?
When Do You See A Neuromuscular Dr. I Must Say My Best Neurological Exam Has Been Done By A Neuromuscular Dr.
You Don't Need A Neurologist To Dx Ms, A Neuromuscular Dr Can.
When You See The New Dr You Can Ask That Dr For New Mri's,when Neurological Symptoms Repeat Themselves A New Mri Should Be Done With And Without Contrast.
I Was Dx'd With The Evoked Potentials,brain Atrophy And High Basic Myelin Protein From The Lp.
You Stood Your Grounds And I Am Astounded That This Dr Didn't Know What To Do,gees How About A Full Neuro Exam That Would Of Been A Start.
This Can Be Looked At As A New Beginning,with New Drs And A Whole Set Of Test That Should Of Been Done A Few Years Back.
I Know You Are Still Not Diagnosed,but Test Are Starting To Be Done.
We Will Be Here For You Through This Journey.
T
Blessed4Life
01-15-2008, 10:59 PM
Thank you all. I went to sleep last night thinking what could I have done better. It's just that for the life of me, I cannot understand how a doctor could look at me and think that it would be acceptable to say, maybe this isn't serious and you can learn to live with it. I wanted to jump up and shake her and ask "are you serious?" I only got the neuromuscular referral after I gave her a piece of my mind. She didn't say exactly what the tests would be but that there would be needles put in my muscles and shocks sent through to see the muscle reactions. I told her specifically, this has got to be something serious because it is becoming progressively worse. My very first symptoms were isolated weakness in my right wrist and burning sensation in my left foot. That was 2003. Over the years all kinds of symptoms have come and gone but I always had weeks if not months were there were no symptoms. Over the past few months the longest break in twitches,jerks, and/or burning (sometimes wet) sensations has been about 20 minutes. I go to sleep with spasms and I wake up with jerks and twitches. How is someone suppose to "live with" these symptoms every day and just accept them as "life"? I told her that I am an educated woman and that I have been doing my own research and that I felt like it was MS or some other condition affecting my central nervous system. She said she didn't think any my symptoms had anything to do with my CNS. Maybe I don't have a medical degree, but I strongly disagree with that.
Nikki, the only eye symptoms I have are twitching and jerking both eye (top and bottom).
Nikki, the only eye symptoms I have are twitching and jerking both eye (top and bottom).
tracijo
01-16-2008, 06:43 PM
I am glad you stood up for yourself. You should feel good about that. I called the NMSS yesterday and when I explained that my neuro appt was a train wreck she asked if it was my neuro by name. They have had lots of complaints about her not having any bedside manner. She was able to refer me to another doctor who she thought I would like much better. so you might want to try contacting them if you need additional info about doctors.
while I had only been dealing with continuous symptoms for about 8 weeks I hear you about the stress these type of symptoms cause. There one day gone the next, different in the morning, worse at night. I think is is only natural to feel really unsettled by this and I have had my moments when I wonder if it is only in my head and then I run into the doorway or drop something without ever realizing it was coming out of my hand. I know that for me this has been really stressful and I know it is only beginning but I do much better when I have a plan and no diagnosis = no plan. So I guess I just want to say we are not out there alone.
Take care and I will be watching for further updates.
Traci
while I had only been dealing with continuous symptoms for about 8 weeks I hear you about the stress these type of symptoms cause. There one day gone the next, different in the morning, worse at night. I think is is only natural to feel really unsettled by this and I have had my moments when I wonder if it is only in my head and then I run into the doorway or drop something without ever realizing it was coming out of my hand. I know that for me this has been really stressful and I know it is only beginning but I do much better when I have a plan and no diagnosis = no plan. So I guess I just want to say we are not out there alone.
Take care and I will be watching for further updates.
Traci
Bearygood
01-16-2008, 09:52 PM
Michelle, if we had gold stars on this message board, you and Cindy would have them this week! Kudos, kudos to you for standing your ground.