Aa
Appointment with Special Specialist.
I went to the new pain specialist today. I was prepared to be unimpressed, since I have had such bad luck with Neurologists. He asked all kinds of pointed questions for over an hour, looked my notes.
Did a Neurological exam. Explained what my body was doing with the exam and why that was important. He asked why it took all these Neurologists a lifetime to see what he sees. He asked why no one has taken it any further to find out more of the mystery to where the disconnect between the brain and the spinal cord is and try to help me. He could not understand why it took an LP to finally give me a diagnosis of MS.
He explained my nerves are being told to rapid fire all the time. Basically I have clonus everywhere. He was puzzled why they did so many Brain MRIs and went no further. Also why they have not really been trying to treat it or even explain it to me.
He is also conservative and does not want to do more harm or turn me into a Zombie to get rid of spasms.
I have real hope.
Alex
Did a Neurological exam. Explained what my body was doing with the exam and why that was important. He asked why it took all these Neurologists a lifetime to see what he sees. He asked why no one has taken it any further to find out more of the mystery to where the disconnect between the brain and the spinal cord is and try to help me. He could not understand why it took an LP to finally give me a diagnosis of MS.
He explained my nerves are being told to rapid fire all the time. Basically I have clonus everywhere. He was puzzled why they did so many Brain MRIs and went no further. Also why they have not really been trying to treat it or even explain it to me.
He is also conservative and does not want to do more harm or turn me into a Zombie to get rid of spasms.
I have real hope.
Alex
Deb my last attack was two weeks ago. It really scared my husband. I had had one just a week earlier in the middle of the night.
Two and half hours is terrible. I have not had one that long but then again I now knock myself out and wake up and it is gone.
Alex
Two and half hours is terrible. I have not had one that long but then again I now knock myself out and wake up and it is gone.
Alex
I do hope this new round of medicine will help these horrid diaphragm spasms. I know you would love to live without that . . . Have you had any recent attacks?
I had an attack of horrid chest pain (don't know where the pain is--could be MS hug, esophageal spasm, diaphragm spasm) a week ago which lasted the longest its every been--about two and a half hours. It happens anywhere at anytime out of the blue. It almost never happens when eating or drinking which leads me to believe its not esophageal . . . I even have been to the ER about this thinking it could be my heart (which lead to a "crazy" diagnosis before my MS diagnosis).
I'm pleased that you found a doctor that you can finally trust. You do need someone you can spend more than 10 minutes with. This just doesn't cut it with the symptoms you have . . .
Deb
I had an attack of horrid chest pain (don't know where the pain is--could be MS hug, esophageal spasm, diaphragm spasm) a week ago which lasted the longest its every been--about two and a half hours. It happens anywhere at anytime out of the blue. It almost never happens when eating or drinking which leads me to believe its not esophageal . . . I even have been to the ER about this thinking it could be my heart (which lead to a "crazy" diagnosis before my MS diagnosis).
I'm pleased that you found a doctor that you can finally trust. You do need someone you can spend more than 10 minutes with. This just doesn't cut it with the symptoms you have . . .
Deb
Ren actually the Neurologist I am thinking of is back at the private practice where I was diagnosed. His Nurse is a Certified MS nurse. I am not sure he will take me as a patient.The practice will take me back. I like my Doctor at Duke but ten minutes once a year face time is not cutting it for the money I am paying.
This Doctor and the one at Duke both think the diaphragm Spasms are myoclonus. This doctor took my diaphragm medicine away for now which is scary. He started me on Zanaflex slowly, then we will add things in. Next another anti seizure. He explained that each work in a different way on different parts of the brain. I am going to trust him something I rarely do. I have been sent to some excellent Doctors. My Neurologists have all been all good they just do not explain things to me and I guess I did not know what to ask.
Alex
This Doctor and the one at Duke both think the diaphragm Spasms are myoclonus. This doctor took my diaphragm medicine away for now which is scary. He started me on Zanaflex slowly, then we will add things in. Next another anti seizure. He explained that each work in a different way on different parts of the brain. I am going to trust him something I rarely do. I have been sent to some excellent Doctors. My Neurologists have all been all good they just do not explain things to me and I guess I did not know what to ask.
Alex
You are not the type of person that seeks validation because you already know what you know about you body and that is a heck of a lot more than most doctors you've seen throughout your life. But, you have now added another "good" one to your list and I am so happy this one worked out better than expected. That is validation enough for you I'm sure.
What plans does he have for you? Did you bring up the diaphragm spasms? You are surely the interesting patient and this guy is lucky to have you. A win-win situation.
Side note...I am sorry we didn't get a chance to talk Tues. I was in the midst of getting discharged and there were so many unresolved issues and frustration on both sides. Thankfully and hopefully we both will be on the better side of this MSerable disease. At least being better informed and taken seriously wil help us cope much better. Hang in there my friend and hope we can talk soon.
Hugs,
Julie
What plans does he have for you? Did you bring up the diaphragm spasms? You are surely the interesting patient and this guy is lucky to have you. A win-win situation.
Side note...I am sorry we didn't get a chance to talk Tues. I was in the midst of getting discharged and there were so many unresolved issues and frustration on both sides. Thankfully and hopefully we both will be on the better side of this MSerable disease. At least being better informed and taken seriously wil help us cope much better. Hang in there my friend and hope we can talk soon.
Hugs,
Julie
I am glad you had a good appointment and you liked your pain specialist.
Good Doctors are difficult to find.
Cheers,
Udkas.
Good Doctors are difficult to find.
Cheers,
Udkas.
I know how you feel, there are only a few MS neuros here and you hardly feel like they pay attention to you. How could they? My first neuro is out to 7 month wait to see him & a 3 month wait to see his PA.
I'm sorry about your lack of funds. I wish I had more answers for you...
Hang in there, :-)
Kelly
I'm sorry about your lack of funds. I wish I had more answers for you...
Hang in there, :-)
Kelly
Alex,
I am SO HAPPY that you have found someone who has an interest in your well-being . This guy sounds so thorough and interested in in his patients!
I'm hoping he can make a real difference for you.
What did he say about the diaphragm spasms that no one believes exist?
Did your bed rest help with how your doing? I know it made you go crazy with boredom even if you had no energy to do anything but this time the choice wasn't yours it was the doc's.
Is this new doc at Duke? What about the new one you're considering? If they weren't , it sure would ease those hefty fees they charge.
Smiling,
Ren
I am SO HAPPY that you have found someone who has an interest in your well-being . This guy sounds so thorough and interested in in his patients!
I'm hoping he can make a real difference for you.
What did he say about the diaphragm spasms that no one believes exist?
Did your bed rest help with how your doing? I know it made you go crazy with boredom even if you had no energy to do anything but this time the choice wasn't yours it was the doc's.
Is this new doc at Duke? What about the new one you're considering? If they weren't , it sure would ease those hefty fees they charge.
Smiling,
Ren
This is a private pain Doctor. I still need to find a new Neurologist. I am thinking of going with a Doctor in town who has a few MS patients at a neurology practice with a couple MS Specialist, he can consult. I have been to most of the MS Specialists in the area and they have too many MS patients. Think about if you have over a thousand MS or probable MS patients are you going to notice a patient like me?
Kelly I have had 5 MRIs all abnormal. 4 brain, 1 C-spine. I used to have money for tests alas it is gone.They want to do c-spine but I can't afford it. I can't afford this new pain Doctor either.
Alex
Kelly I have had 5 MRIs all abnormal. 4 brain, 1 C-spine. I used to have money for tests alas it is gone.They want to do c-spine but I can't afford it. I can't afford this new pain Doctor either.
Alex
Yes, it definitely sounds very positive. I'm very happy for you and I'm so glad that you have found this doctor. We all deserve to be treated like that.
Is he in a big medical center or an MS center? Did your brain MRIs not really show anything and how about your spinal MRIs - or have you not had any of those?
-Kelly
Is he in a big medical center or an MS center? Did your brain MRIs not really show anything and how about your spinal MRIs - or have you not had any of those?
-Kelly
Dear Alex,
I am so happy for you, hope he will find out what he can do for you and things will then get better very soon. This really sounds like he is very interested in your "case", and that is what we all are looking for. You sure deserved it, after all those years.
My best,
Dagun
I am so happy for you, hope he will find out what he can do for you and things will then get better very soon. This really sounds like he is very interested in your "case", and that is what we all are looking for. You sure deserved it, after all those years.
My best,
Dagun
"He asked why no one has taken it any further to find out more of the mystery to where the disconnect between the brain and the spinal cord is and try to help me."
When I met with my new guru for the first time, he looked at the array of seeming unrelated symptoms and asked basically the same question. Why hasn't anyone looked for a possible connection?
When I said that on there own they weren't really enough of a problem for me to pursue. He said that's because "you're a *******" :-) And then he said he was talking about my doctors :-)
It sounds to me like you are in very good hands!
When I met with my new guru for the first time, he looked at the array of seeming unrelated symptoms and asked basically the same question. Why hasn't anyone looked for a possible connection?
When I said that on there own they weren't really enough of a problem for me to pursue. He said that's because "you're a *******" :-) And then he said he was talking about my doctors :-)
It sounds to me like you are in very good hands!
Wonderful news Alex,
Your weiry brain and body sound like they received some much needed understanding through healing words of comfort and compassion.
You are so deserving to find this fabulous doctor with all that you have and are going through.
Blessings
Alex
Your weiry brain and body sound like they received some much needed understanding through healing words of comfort and compassion.
You are so deserving to find this fabulous doctor with all that you have and are going through.
Blessings
Alex
>> He asked why it took all these Neurologists a lifetime to see what he sees.
i can empathize for what it is worth. i signed up for financial aid to see a specialist wit cleveland clinic to get on a "treatment program" like you. the VA goes no further as you know.
good luck with the doctor progress. wish positive results for you to help with the pain, etc!!
i can empathize for what it is worth. i signed up for financial aid to see a specialist wit cleveland clinic to get on a "treatment program" like you. the VA goes no further as you know.
good luck with the doctor progress. wish positive results for you to help with the pain, etc!!
It's about time, Alex, that you catch a break and get a doctor who you can work with. When do you return? I hope soon to work out the plan.
Trust me on this, Alex. Pain clinics are watched like hawks. None will come close to turning anyone into a Zombie. They only use narcs as a last resort and very little even then. They know other ways to help pain today so turning any into the Zombie's of yesterday don't happen.
wow, finally a light at the end of the tunnel Alex.....great news!
keep us posted
keep us posted
Yay! Exactly what I've been saying all this time. I'm so glad they finally got you a doctor that has some sense.
he sounds great, how encouraging for a change. there are good ones out there, just not enough! keep us posted Alex, I will be interested to hear his recommendations for you.
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