Aa
Back in the Saddle Again?
I had my appointment with my regular neuro today. She asked me to tell her what happened at the MS Clinic. As I began describing/reporting all that happened she looked absolutely horrified. She was angry. She said “they threw out the SSEP?” “they threw out the LP report that I had done” “they told you you didn’t have MS but didn’t say what they think you do have”. “Where did they tell you to go next?” "what did they say you have?"
I described all of it and she was pretty angry. She remained professional but her anger was obvious in her voice and face. She was stunned.
I asked her to again specify exactly what she thought I had.
She said:
“I sent you for the second opinion because I believed that you have MS”
“I wanted the clinic to follow you because that is their specialty”
“What is the name of the doctor that you saw?”
“I believe that you do have MS”
Her only problem was that I don’t have enough visible lesions.
She went on to explain the issue with people being thrown in the MS diagnosis and that doctors aren’t looking into other possibilities
She scheduled me for an EMG. She didn't realize that that avenue hadn't been covered.
I have decided that I really like her. She is down to earth, respectful and honest. She also seems to genuinely care about me. I told her that everyone keeps refusing to monitor my pain meds. She said she would do it no problem.
What a difference a day makes!!!
What do you guys think? I am just going to rest and let the dust fall where it may.
phew
Red
She definitely cares! And, she can treat your MS. YOu don't need an MS specialist. Just a solid professional in the field of neurology who can treat you!
Happy for you, Red.
Rest well!
-Shell
Happy for you, Red.
Rest well!
-Shell
Thanks everyone,
Each experience teaches me more and more.
Jean, I'm so sorry for what you had to go through. I had no idea that neurology wasn't a strong point. I am wondering if research is their main focus. The LP you had is similar to the one I had last month. A big dufus student did mine, the student would have been fine if he could have treated me like a human being and not mess it up like he did.
Quix, thanks for being the voice of reason always. I think this avenue she is on is the last hopefully. I will read up on the CIS etc.
Michelle and all thank you.
I feel at peace this week more than I have in months.
Despite the fact that my face is still swollen
Hugs to all
Red
Each experience teaches me more and more.
Jean, I'm so sorry for what you had to go through. I had no idea that neurology wasn't a strong point. I am wondering if research is their main focus. The LP you had is similar to the one I had last month. A big dufus student did mine, the student would have been fine if he could have treated me like a human being and not mess it up like he did.
Quix, thanks for being the voice of reason always. I think this avenue she is on is the last hopefully. I will read up on the CIS etc.
Michelle and all thank you.
I feel at peace this week more than I have in months.
Despite the fact that my face is still swollen
Hugs to all
Red
thank heavens red!!!
i am so glad to know that you are again feeling better about understanding what is going on in your body. great that you have confidence and garnered a sense of compassion out of the current visit with your doc.
i'm so sorry you had to go through all of the upheaval to begin with, but wonderful that you have landed back in a comfortable place.
so terrible these experiences can be...glad someone has come along and given you some reason and order once again.
xoxoxo michelle
i am so glad to know that you are again feeling better about understanding what is going on in your body. great that you have confidence and garnered a sense of compassion out of the current visit with your doc.
i'm so sorry you had to go through all of the upheaval to begin with, but wonderful that you have landed back in a comfortable place.
so terrible these experiences can be...glad someone has come along and given you some reason and order once again.
xoxoxo michelle
Link to Quix's post re CIS:
http://www.medhelp.org/posts/Multiple-Sclerosis/CIS---THE-CLINICALLY-ISOLATED-SYNDROME/show/1138131
http://www.medhelp.org/posts/Multiple-Sclerosis/CIS---THE-CLINICALLY-ISOLATED-SYNDROME/show/1138131
Red, I see that your neuro sees how unprofessional they ended up being. There is, however, no minimum number of lesions that must be visible to be diagnosed with MS. Let her explore the diagnostic avenues that haven't been looked at. This is crucial.
When she feels she has done that, you can have the discussion with her that at some point, the diagnosis is more likely than not and shouldn't you be considered as so likely to have it (having had other things excluded) that it is reasonable to begin meds. Afterall, meds are started in CIS - which you are waaaay beyond - with just a lesion or two.
Would someone find my post from last year on CIS - the one that had the graphs showing the probability of having MS with one, two or three or more lesions? I would appreciate it.
To all, be careful of mentioning doctor's actual names here except like this where all the info is positive. If there is any question about negativity, do all the actual naming privately.
Quix
When she feels she has done that, you can have the discussion with her that at some point, the diagnosis is more likely than not and shouldn't you be considered as so likely to have it (having had other things excluded) that it is reasonable to begin meds. Afterall, meds are started in CIS - which you are waaaay beyond - with just a lesion or two.
Would someone find my post from last year on CIS - the one that had the graphs showing the probability of having MS with one, two or three or more lesions? I would appreciate it.
To all, be careful of mentioning doctor's actual names here except like this where all the info is positive. If there is any question about negativity, do all the actual naming privately.
Quix
I was in college at UM when I has my first seizure. Being the teaching hospital that it is, they ran every test possible -- including an LP by an intern that had never done it before with at least 7 other students looking on. They screwed up the LP and I got the spinal tap headache and had to go back in for a blood patch. In the ER they just repeatedly asked me if I was on illegal drugs. I've never even smoked pot in my life, let alone do any other kind of drugs.
The epi neuro that I was assigned to there was very good -- in fact, she moved to Henry Ford because the Henry Ford neurology department is better. Since I was in AA, I tried a couple of other neurologists in the city -- but all were very bad. So I followed her to Henry Ford and I'm so glad I did. She takes the time to answer all my questions and I feel reassured that I'm on the right track when I leave. Anyway, this isn't the neuro forum -- so I'll stop talking about epi -- but I just wanted to give you an idea of what the neurologists there are like. Dr. Cerghet will answer every question you have and not rush you out the door. As usual, write down all your questions so that when you get in there you don't forget. I have memory problems from the epi, so I take lots of notes anyway.
It takes a while to get an appointment, but when you are there they do not rush you. Actually, I called the nurse yesterday about some double vision problem I'm having and she mentioned something about talking to Dr. Cerghet. So perhaps the doc is back in town now. Even if she is, it still takes a while to get an appointment.
The epi neuro that I was assigned to there was very good -- in fact, she moved to Henry Ford because the Henry Ford neurology department is better. Since I was in AA, I tried a couple of other neurologists in the city -- but all were very bad. So I followed her to Henry Ford and I'm so glad I did. She takes the time to answer all my questions and I feel reassured that I'm on the right track when I leave. Anyway, this isn't the neuro forum -- so I'll stop talking about epi -- but I just wanted to give you an idea of what the neurologists there are like. Dr. Cerghet will answer every question you have and not rush you out the door. As usual, write down all your questions so that when you get in there you don't forget. I have memory problems from the epi, so I take lots of notes anyway.
It takes a while to get an appointment, but when you are there they do not rush you. Actually, I called the nurse yesterday about some double vision problem I'm having and she mentioned something about talking to Dr. Cerghet. So perhaps the doc is back in town now. Even if she is, it still takes a while to get an appointment.
Hi Jean,
I didn't know about your bad experience here at U of M! Isn't it odd that U. of M. ends up being a horrible experience! I expected them to be top notch. I am going to search for your posts.
I really agree with you about the MS Specialist in the long run. I never even thought of Henry Ford although I knew you had someone there.
I just looked Dr. Cerghet up and found only positive reviews. I think with her being gone etc., that the timing will be good. Prbably December or January or so. I should be 'healed' from this horrible experience by then.
Thank you for letting me know about this Jean!! I would really like to hear what happened with you too.
cheers
Red
I didn't know about your bad experience here at U of M! Isn't it odd that U. of M. ends up being a horrible experience! I expected them to be top notch. I am going to search for your posts.
I really agree with you about the MS Specialist in the long run. I never even thought of Henry Ford although I knew you had someone there.
I just looked Dr. Cerghet up and found only positive reviews. I think with her being gone etc., that the timing will be good. Prbably December or January or so. I should be 'healed' from this horrible experience by then.
Thank you for letting me know about this Jean!! I would really like to hear what happened with you too.
cheers
Red
Red --
I'd strongly recommend that you try to see at least one more MS neuro. My doc is at Henry Ford -- Dr. Cerghet. She is very down to earth.
I went to Henry Ford Hospital for my first incident because my epilepsy neurologist was affiliated with them. When that incident and the follow up tests indicated MS, the neuros working the hospital floor recommended that I see Dr. Cerghet who specializes in MS. They wanted me to keep seeing both -- one neuro for MS and one neuro for epilepsy. They really believed in seeing the best doc appropriate for what illness you are having treatment for.
Dr. Cerghet (the MS neuro) is *very* dedicated to accounting for every piece of test results and symptoms you have -- and if there is a possibility that you don't have MS, she will check everything out. She doesn't hold back on getting the correct diagnosis--she is very dedicated to making sure it is diagnosed correctly. She is very caring and actually apologizes for recommending another test--so she only recommends one when she feels it will be very important for a diagnosis.
The 2 docs communicate to keep each other informed of what is happening -- and then of course I give them updates about what is happening with the other disease, and vice versa.
Overall, you can never have too much information I think. Now you know you have at least one person on your team, and there may be another out there too that will just confirm things.
Dr. Cerghet will be out of the country for at least another month or so, but since you aren't in a huge hurry, it should be ok with your timing.
Let me know if you have any questions. You may recall in my past posts that I haven't been thrilled with UMich hospital and their affiliated docs, so I'm very glad I went to HFH.
Take care,
Jean
dx epi 1996
dx MS Feb 2010
I'd strongly recommend that you try to see at least one more MS neuro. My doc is at Henry Ford -- Dr. Cerghet. She is very down to earth.
I went to Henry Ford Hospital for my first incident because my epilepsy neurologist was affiliated with them. When that incident and the follow up tests indicated MS, the neuros working the hospital floor recommended that I see Dr. Cerghet who specializes in MS. They wanted me to keep seeing both -- one neuro for MS and one neuro for epilepsy. They really believed in seeing the best doc appropriate for what illness you are having treatment for.
Dr. Cerghet (the MS neuro) is *very* dedicated to accounting for every piece of test results and symptoms you have -- and if there is a possibility that you don't have MS, she will check everything out. She doesn't hold back on getting the correct diagnosis--she is very dedicated to making sure it is diagnosed correctly. She is very caring and actually apologizes for recommending another test--so she only recommends one when she feels it will be very important for a diagnosis.
The 2 docs communicate to keep each other informed of what is happening -- and then of course I give them updates about what is happening with the other disease, and vice versa.
Overall, you can never have too much information I think. Now you know you have at least one person on your team, and there may be another out there too that will just confirm things.
Dr. Cerghet will be out of the country for at least another month or so, but since you aren't in a huge hurry, it should be ok with your timing.
Let me know if you have any questions. You may recall in my past posts that I haven't been thrilled with UMich hospital and their affiliated docs, so I'm very glad I went to HFH.
Take care,
Jean
dx epi 1996
dx MS Feb 2010
A Huge thank you to all!! I couldn't have managed this torrential maze without all of your support and the giving of yourselves. When I sat in her office waiting for her to come in I thought about all of you.
I will keep this neuro, it helps so much that she is already thinking in the future.
She is a definitive keeper.
As far as I'm concerned the MS Specialist experience is over, my life and treatment are on target!! Like you said, sometimes things happen so that you see the value in what you had.
Upward and Onward ladies and gents
xxxxoooo Red
I will keep this neuro, it helps so much that she is already thinking in the future.
She is a definitive keeper.
As far as I'm concerned the MS Specialist experience is over, my life and treatment are on target!! Like you said, sometimes things happen so that you see the value in what you had.
Upward and Onward ladies and gents
xxxxoooo Red
I think it's important to find a doctor that genuinely cares about you and your welfare. If they know what they're doing, even better! Sounds like you're gonna be all right.
I am so glad that you binded with your regular neuro over this horrible experience! Who knows maybe that was the reason that you went through this so that the two of you could connect? Always looking for a positive.
She sounds completely commited to your care and monitoring you now and that will make a huge difference in your future journey. We will never know if the "speicalist" had agreed and taken over your care how you would have felt but I have a good feeling about you future care with the "old" and now only neuro in your corner and angry!
Thinking of you - keep us posted after the EMG
Hugs,
Erin :)
Oh, I'm so happy for you!!! That is one great neuro you have - she is a KEEPER! Don't ever let her go!! Also, don't let her talk too much to the buffoons you saw at the university because they might end up causing her to change her position.
Just forget, if you can, (even though it's part of your medical record now) your experience with the trolls at the university. And NEVER make the mistake of going back to that university (no matter what false promises they may make to entice you to return).
Keep tight with your regular neuro. She is all you need!
Waving to you through the locked gates of Limboland as you walk back into your diagnosis. . .
WAF
Just forget, if you can, (even though it's part of your medical record now) your experience with the trolls at the university. And NEVER make the mistake of going back to that university (no matter what false promises they may make to entice you to return).
Keep tight with your regular neuro. She is all you need!
Waving to you through the locked gates of Limboland as you walk back into your diagnosis. . .
WAF
Dear Red
I feel much happier today that you have been treated as the special human being you are, and not a piece of meat. I truly felt enraged at your previous experience and could not believe that someone could throw something so traumatic at you without validation or an alternative diagnosis.
This neuro sounds as if she is on your side and that you have been listened to and understood and this is what we all deserve when facing such uncertainty in our lives.
I think you are right, at the end of the day whatever is going on in your body is happening and if doctors are disagreeing about this, it is their problem to sort out and as long as your pain is under control and treament in place, then worrying is not going to change anything. Take it easy...you have already showed such dignity and grace in how you have handled this and some doctors could learn a lesson or two in humanity from you.
Love and hugs
Sarah xxxx
I feel much happier today that you have been treated as the special human being you are, and not a piece of meat. I truly felt enraged at your previous experience and could not believe that someone could throw something so traumatic at you without validation or an alternative diagnosis.
This neuro sounds as if she is on your side and that you have been listened to and understood and this is what we all deserve when facing such uncertainty in our lives.
I think you are right, at the end of the day whatever is going on in your body is happening and if doctors are disagreeing about this, it is their problem to sort out and as long as your pain is under control and treament in place, then worrying is not going to change anything. Take it easy...you have already showed such dignity and grace in how you have handled this and some doctors could learn a lesson or two in humanity from you.
Love and hugs
Sarah xxxx
Regardless of which side of the mountain you are on, it makes all the difference as to who is doing the trek with you. It sounds like this neuro is one to keep on your team. I am so glad to hear that she understands what poppycock this was at the clinic. hugs, L
hi red
get off that bloody roller coaster and have a cup of tea - u know us brits love our tea xxx ha ha lots love to u xxxxx
jan xx
get off that bloody roller coaster and have a cup of tea - u know us brits love our tea xxx ha ha lots love to u xxxxx
jan xx
Hi Jan, thank you so much. I do feel a sense of relief and have put my mind at rest.
I do feel at peace with this no matter what happens. And it really has been a bloddy roller coaster---and I'm getting off of it now!
Red
I do feel at peace with this no matter what happens. And it really has been a bloddy roller coaster---and I'm getting off of it now!
Red
thanks D. It's hard to know what is what or who to believe at this point.
I feel peaceful about what is happening. Doctors have different opinions, different ways to interpret criteria and certainly have different hypotheses.
Since I am not going to be taking of the DMD's it's a moot point.
I can't hang on the words of a doctor sho says I have or don't have. They make mistakes all the time. So, I am just going to let go of this.
Thanks for being so supportive
Red
I feel peaceful about what is happening. Doctors have different opinions, different ways to interpret criteria and certainly have different hypotheses.
Since I am not going to be taking of the DMD's it's a moot point.
I can't hang on the words of a doctor sho says I have or don't have. They make mistakes all the time. So, I am just going to let go of this.
Thanks for being so supportive
Red
hi red
what a bloody roller coaster ride for you xxxxxx
i really hope you get settled with some piece of mind i really do
lots love thinking of you xx
jan xx
what a bloody roller coaster ride for you xxxxxx
i really hope you get settled with some piece of mind i really do
lots love thinking of you xx
jan xx
Well Gee Welcome Back to the land of the MonSter I guess...Holy Cow!!! You are lucky to have a great Dr it sounds like. I say kick your feet up, and let the dust blow away.
I am praying that this neuro you have finds a solution to your horrible experience with the specialist.
Smile and know you are doing the best for you :)
D
I am praying that this neuro you have finds a solution to your horrible experience with the specialist.
Smile and know you are doing the best for you :)
D
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