Aa
EMG-NCT Results are In
My appointment with my general neurologist got off to a bad start this week. When she saw that I wasn’t wearing the arm splints she had prescribed she loudly said “where are the splints I ordered and why aren’t you wearing them”. I didn’t have much of an excuse as I hadn’t picked them up. She had found carpal tunnel in my left hand and something else in my right. “Umm….I forgot to pick them up” “I can’t help you if you don’t do what I say”. “I know” I confess.
A year ago I had Nerve Conduction Testing. However, the doctor wrote the order for the wrong arm. All the explaining, coaxing and requesting didn’t help as that neurologist proceeded to do the wrong arm saying “well, we will start with the arm ordered and if we see anything we will do the other”. He didn’t think the ordering doctor could have possibly ordered it wrong. It wasn’t a conversation I could win.
That was then, this is now:
So, my present neurologist continued to tell me she found things in the EMG. She said “I was unable to get a nerve response or movement from both ankles and feet”. I wasn’t surprised as I have no feeling in them and can’t feel the pedals in my car. Then she reiterated that I do have carpal tunnel in my left and damage in my right hand. I said “that’s probably why those muscles have wasted and I can’t open the mail, a can or a bubble pack”. “Yes” she said.
She continued, “You also have Neuropathy”. This is when I developed an attitude---and not a good one. I said: “neuropathy is not a disease it’s a symptom”.
“Yes, it is too a disease, we don’t know the source of yours because you don’t have diabetes”. She yelled angrily!
I start in again, “who is going to help me get the right power chair? I don’t know what is going to happen next”
She asks “How did you do this week”.
I reply “well, except for the 3 days I couldn’t walk it was OK I guess”…..I haven’t been to a grocery store in 5 months; I can’t feel the pedals in my car, who is going to help me, what will happen next”. Insert lots of sarcasm.
She asks about vitamin B12 levels. I told her I had it was tested back in April at my old PCP in a neighboring town. I explained that they had me self injecting B12 each week for 6 weeks.
“Then what”? She says.
“Then they tested it and it was OK” I remarked.
“Then what”? She says.
“Then nothing” I said
“What do you mean nothing?” She said
“Because the level was OK then”. I replied.
She slammed the chart on the table and said “that’s it; they didn’t try to find out why it was so low in the first place”? “Umm no” I said sheepishly.
“They can’t do that, give you high doses of that and not see it through”. “There has to be a reason that your B12 hormones are being depleted, you could have Pernicious Anemia”. (Give me a break I think to myself)
“What about vitamin D”? She said.
I confess, “I was told by a different doctor that it was extremely low too”.
She gets out of her chair, stomping out to get a lab sheet. As she passes the door she gives me the order and leaves saying “get this done today”.
That’s it, no goodbyes see you later, or it was nice seeing you today, or have a nice day.
I go back when they receive the lab results. I have no idea why. Most people with MS have low D and B12 levels. I just didn’t think it was a big deal.
Does this mean I don't have MS after all. I thought this was par for the course for people with MS. That's why I am trying to understand the neuropathy. Is it really a big deal?
A year ago I had Nerve Conduction Testing. However, the doctor wrote the order for the wrong arm. All the explaining, coaxing and requesting didn’t help as that neurologist proceeded to do the wrong arm saying “well, we will start with the arm ordered and if we see anything we will do the other”. He didn’t think the ordering doctor could have possibly ordered it wrong. It wasn’t a conversation I could win.
That was then, this is now:
So, my present neurologist continued to tell me she found things in the EMG. She said “I was unable to get a nerve response or movement from both ankles and feet”. I wasn’t surprised as I have no feeling in them and can’t feel the pedals in my car. Then she reiterated that I do have carpal tunnel in my left and damage in my right hand. I said “that’s probably why those muscles have wasted and I can’t open the mail, a can or a bubble pack”. “Yes” she said.
She continued, “You also have Neuropathy”. This is when I developed an attitude---and not a good one. I said: “neuropathy is not a disease it’s a symptom”.
“Yes, it is too a disease, we don’t know the source of yours because you don’t have diabetes”. She yelled angrily!
I start in again, “who is going to help me get the right power chair? I don’t know what is going to happen next”
She asks “How did you do this week”.
I reply “well, except for the 3 days I couldn’t walk it was OK I guess”…..I haven’t been to a grocery store in 5 months; I can’t feel the pedals in my car, who is going to help me, what will happen next”. Insert lots of sarcasm.
She asks about vitamin B12 levels. I told her I had it was tested back in April at my old PCP in a neighboring town. I explained that they had me self injecting B12 each week for 6 weeks.
“Then what”? She says.
“Then they tested it and it was OK” I remarked.
“Then what”? She says.
“Then nothing” I said
“What do you mean nothing?” She said
“Because the level was OK then”. I replied.
She slammed the chart on the table and said “that’s it; they didn’t try to find out why it was so low in the first place”? “Umm no” I said sheepishly.
“They can’t do that, give you high doses of that and not see it through”. “There has to be a reason that your B12 hormones are being depleted, you could have Pernicious Anemia”. (Give me a break I think to myself)
“What about vitamin D”? She said.
I confess, “I was told by a different doctor that it was extremely low too”.
She gets out of her chair, stomping out to get a lab sheet. As she passes the door she gives me the order and leaves saying “get this done today”.
That’s it, no goodbyes see you later, or it was nice seeing you today, or have a nice day.
I go back when they receive the lab results. I have no idea why. Most people with MS have low D and B12 levels. I just didn’t think it was a big deal.
Does this mean I don't have MS after all. I thought this was par for the course for people with MS. That's why I am trying to understand the neuropathy. Is it really a big deal?
COMMUNITY LEADER
Don't you go change one little hair on your head, your simply perfect just the way you are!
Cheers.....JJ
Cheers.....JJ
You sound almost just like me! Could we be sisters separated at birth??? Just teasing & hope I made you smile.
Low B-12 here, carpal tunnel (wear splints each night), & neuroapthy in feet/legs. I can still feel some in my left foot & right foot has intermittent buzzing.
Slurred speech intermittently & buzzing in head. Oh, also feel like electrical sparks shoot randomly in my body at times.
Last but not least, if I don't take Benedryl daily, I have hives all over. Huge patches & lines will form with the lightest skin contact.
Want to join me in a community scream???
Take care!
Nancy
Low B-12 here, carpal tunnel (wear splints each night), & neuroapthy in feet/legs. I can still feel some in my left foot & right foot has intermittent buzzing.
Slurred speech intermittently & buzzing in head. Oh, also feel like electrical sparks shoot randomly in my body at times.
Last but not least, if I don't take Benedryl daily, I have hives all over. Huge patches & lines will form with the lightest skin contact.
Want to join me in a community scream???
Take care!
Nancy
Red, there are more reasons for you to feel afraid and raw than any one person should have to deal with in a lifetime, let alone a single calendar year. I know the experience of starting a topic here and having it morph into something unexpected. More than once already, the act of authoring a new topic question has shown me clearly that my real concern was quite different than I initially thought it was. That's one of the benefits of getting thoughts down in black and white.
If you want to be quiet, be quiet. But I don't think anyone else here is asking for or wants that from you. I don't think going to appointments with a zippered lip is what will help you make progress with your MS treatment. Will you make more communication mistakes? Yes. Will the doctor? Certainly. Will the rest of us. No. (OK, you are paying attention.) Change that to ABSOLUTELY. But open communication is still the most useful tool in our arsenal.
Red, I appreciate the fact that you were so self-aware of your personal contribution to this 'comedy of communication errors'. I thought how perceptive you were to recognize it and how courageous you were to voice it. I had meant to mention it specifically. Although I do wish I had included that observation, my post wasn't about laying blame. I seem obsessed with solution finding these days. The masculine do-something-to-fix-it component of my personality wants to jump to solutions before giving adequate time to the feelings and empathy part of experiences. It seems cyber communication may tend to suppress my softer feminine component a bit.
I offer my apology for what was apparently my misread of your intentions for the last line of your post (the one immediately preceding my response). Since you had just mentioned how hurt you were, I read it as written with sarcasm and that nearly kept me from replying at all. (See, lots of us get our feeling hurt easily.) I realize now that it was a sincere thank you and truly apologize if my mistake gave a negative tone to my observations.
I sincerely hope this topic is a learning, growing, freeing one and not something that could ever cause divisiveness among members. My best to you.
Mary
If you want to be quiet, be quiet. But I don't think anyone else here is asking for or wants that from you. I don't think going to appointments with a zippered lip is what will help you make progress with your MS treatment. Will you make more communication mistakes? Yes. Will the doctor? Certainly. Will the rest of us. No. (OK, you are paying attention.) Change that to ABSOLUTELY. But open communication is still the most useful tool in our arsenal.
Red, I appreciate the fact that you were so self-aware of your personal contribution to this 'comedy of communication errors'. I thought how perceptive you were to recognize it and how courageous you were to voice it. I had meant to mention it specifically. Although I do wish I had included that observation, my post wasn't about laying blame. I seem obsessed with solution finding these days. The masculine do-something-to-fix-it component of my personality wants to jump to solutions before giving adequate time to the feelings and empathy part of experiences. It seems cyber communication may tend to suppress my softer feminine component a bit.
I offer my apology for what was apparently my misread of your intentions for the last line of your post (the one immediately preceding my response). Since you had just mentioned how hurt you were, I read it as written with sarcasm and that nearly kept me from replying at all. (See, lots of us get our feeling hurt easily.) I realize now that it was a sincere thank you and truly apologize if my mistake gave a negative tone to my observations.
I sincerely hope this topic is a learning, growing, freeing one and not something that could ever cause divisiveness among members. My best to you.
Mary
Hey, Kiddo, what a draining appointment that was. I have been hit or miss here or I would have seen the "head's up" earlier.
There's a lot to comment on. I'll confess that I occasionally went into an appointment already angry at something and then proceeded to take it out on the person in the room. Usually I could catch myself and apologize, then start over. So, her very first words had you on the defensive. Bad setup.
She chastised you about the spints, you groveled and that should have been that. But, then she proceeded to interrogate YOU about what other doctors had done. Inappropriate and unprofessional. It wasn't YOUR fault that things weren't carried through. I'm sure your back was up by that time too. As the professional in the room who is not suffering from body-break-down she should have corraled herself and regained composure. I would have been crying, had I been you in that circumstance.
Now, Neuropathy. Neuropathy is indeed a vague diagnosis. It's a name for a bunch of diagnoses and it doesn't say much. If you merely think about the word itself it means "disease of the nerves" so it could be peripheral or central. However, through the years here on the forum it seems clear to me that a good number of neurologists use the term ONLY to refer to Peripheral Neuropathy - that is disease of the nerves that have already left the spinal column.
And yes, the EMG-NCV is the test that is used to diagnose the presence of a peripheral neuropathy. Sounds like you do have a peripheral neuropathy of unkown cause, though the neuropathy caused by very low B12 may not always reverse when the level is brought up.
She wants to check you for pernicious anemia (the inability to absorb B12 in the stomach) That's fine. The current recommendations for treatment of that is a "pill" of 1000mcg per day. A shole multidtude of studies in the late '90's showed that the pill - regular old cyanocobalmin is plenty sufficient to treat pernicious anemia. You don't even need to use the sublingual form. This goes counter to what we were all taught before the '90's and many doctors don't know about the studies.
She is correct to check the two vitamin levels.
She was so confrontational from the beginning that you getting sarcastic with her was a normal human response, in my opinion. I'm actually kinda proud of you. It takes a lot of **** to talk back to a doctor. And you did it in a way that should remind her that you need a lot of help.
It sounds to me like you need a new, improved and more compassionate neuro. She never recovered her composure and was still stomping around when it came to writing up the lab sheet. What a loser.
At this point I think you might ask your PCP to help run interference. Maybe have your PCP request the referral for a power chair/scooter. Your PCP can certainly request physical therapy for the carpal tunnel syndrome. And maybe the PCP can mention that you were terribly upset by the neuro's anger toward you and didn't feel you deserved it. See if your regular doc can smooth the waters. Sick people are allowed irritability and anger. THEY ARE SICK. They feel crummy and are often in pain. And frequently, they are frightened. The doctors should know this, be capable of dealing with it and not making it personal.
What you described to us is a personal temper tantrum on the part of the neuro. Shame on her.
Now, you have been given another neuro diagnosis on top of the MS and are afraid that you might lose the MS diagnosis. That might or might not be appropriate. I would have to review all of your symptoms and abnormal findings to have a feel for this. There are many, many dozens of types of periperal neuropathy.
Hang in there. Gather youself and know that any anger on your part sounds justified, but we still have to work with these people. You might ask your PCP if there are any other neuros who might be better, and that you dread seeing this one - with her built-in and unbridled anger. You are not responsible for the state you are in. We don't blame the victim. That isn't the way medicine is supposed to work.
Take care, Kiddo. We can work through this.
((((((HUGS))))))
Mama Quix
There's a lot to comment on. I'll confess that I occasionally went into an appointment already angry at something and then proceeded to take it out on the person in the room. Usually I could catch myself and apologize, then start over. So, her very first words had you on the defensive. Bad setup.
She chastised you about the spints, you groveled and that should have been that. But, then she proceeded to interrogate YOU about what other doctors had done. Inappropriate and unprofessional. It wasn't YOUR fault that things weren't carried through. I'm sure your back was up by that time too. As the professional in the room who is not suffering from body-break-down she should have corraled herself and regained composure. I would have been crying, had I been you in that circumstance.
Now, Neuropathy. Neuropathy is indeed a vague diagnosis. It's a name for a bunch of diagnoses and it doesn't say much. If you merely think about the word itself it means "disease of the nerves" so it could be peripheral or central. However, through the years here on the forum it seems clear to me that a good number of neurologists use the term ONLY to refer to Peripheral Neuropathy - that is disease of the nerves that have already left the spinal column.
And yes, the EMG-NCV is the test that is used to diagnose the presence of a peripheral neuropathy. Sounds like you do have a peripheral neuropathy of unkown cause, though the neuropathy caused by very low B12 may not always reverse when the level is brought up.
She wants to check you for pernicious anemia (the inability to absorb B12 in the stomach) That's fine. The current recommendations for treatment of that is a "pill" of 1000mcg per day. A shole multidtude of studies in the late '90's showed that the pill - regular old cyanocobalmin is plenty sufficient to treat pernicious anemia. You don't even need to use the sublingual form. This goes counter to what we were all taught before the '90's and many doctors don't know about the studies.
She is correct to check the two vitamin levels.
She was so confrontational from the beginning that you getting sarcastic with her was a normal human response, in my opinion. I'm actually kinda proud of you. It takes a lot of **** to talk back to a doctor. And you did it in a way that should remind her that you need a lot of help.
It sounds to me like you need a new, improved and more compassionate neuro. She never recovered her composure and was still stomping around when it came to writing up the lab sheet. What a loser.
At this point I think you might ask your PCP to help run interference. Maybe have your PCP request the referral for a power chair/scooter. Your PCP can certainly request physical therapy for the carpal tunnel syndrome. And maybe the PCP can mention that you were terribly upset by the neuro's anger toward you and didn't feel you deserved it. See if your regular doc can smooth the waters. Sick people are allowed irritability and anger. THEY ARE SICK. They feel crummy and are often in pain. And frequently, they are frightened. The doctors should know this, be capable of dealing with it and not making it personal.
What you described to us is a personal temper tantrum on the part of the neuro. Shame on her.
Now, you have been given another neuro diagnosis on top of the MS and are afraid that you might lose the MS diagnosis. That might or might not be appropriate. I would have to review all of your symptoms and abnormal findings to have a feel for this. There are many, many dozens of types of periperal neuropathy.
Hang in there. Gather youself and know that any anger on your part sounds justified, but we still have to work with these people. You might ask your PCP if there are any other neuros who might be better, and that you dread seeing this one - with her built-in and unbridled anger. You are not responsible for the state you are in. We don't blame the victim. That isn't the way medicine is supposed to work.
Take care, Kiddo. We can work through this.
((((((HUGS))))))
Mama Quix
Twopack, Thank you for summarizing the communication between my doctor and me so beautifully. As far as zipping up my mouth, my fear is that I have influenced what the doctors have done---but since I’m the patient it’s OK. When I saw the MS Specialist the second time, I cried like a baby. I guess I need to let myself off the hook when it comes to emotions. My fears are about mobility are very real.
The issue of the ‘appearance’ of an exclusive relationship and/or communication through private messaging felt very uncomfortable to me as well. I didn’t know what to do without causing hurt. I don’t engage in private messaging that is controversial or inflammatory towards any member of our community. I failed to handle it head on and you were hurt, I’m sorry!
Division is the last thing we need here.
Nancy, ess, JJ, and everyone thank you.
Mama Quix!.,
Thank you for taking so much time with this, I so appreciate your knowledge and experience.
Yes, the mood was very difficult. I was expressing so much fear; I was just beside myself saying: what is going to happen to me, who will help me with the right power chair, etc. Etc. I was expressing so much fear even if I was talking to myself. It would have meant the world if she had said “I will see you through”, but like you said she “chastised me”. And I did feel grilled. I felt so responsible for everything.
I remember her saying neuropathy and am not sure she used the word peripheral or not but I will make a point of finding that out next time.
It is both interesting and comforting to know how it feels on the doctor side.
I am going to talk with my new PCP about finding a new neuro like you said. Neither I nor her are incredibly invested at this point. So, changing now would be OK.
The: We can work through this” is so comforting.
Thank you Mama Quix!
And thanks to all of you----now Upward and onwards!
(((((Red))))
The issue of the ‘appearance’ of an exclusive relationship and/or communication through private messaging felt very uncomfortable to me as well. I didn’t know what to do without causing hurt. I don’t engage in private messaging that is controversial or inflammatory towards any member of our community. I failed to handle it head on and you were hurt, I’m sorry!
Division is the last thing we need here.
Nancy, ess, JJ, and everyone thank you.
Mama Quix!.,
Thank you for taking so much time with this, I so appreciate your knowledge and experience.
Yes, the mood was very difficult. I was expressing so much fear; I was just beside myself saying: what is going to happen to me, who will help me with the right power chair, etc. Etc. I was expressing so much fear even if I was talking to myself. It would have meant the world if she had said “I will see you through”, but like you said she “chastised me”. And I did feel grilled. I felt so responsible for everything.
I remember her saying neuropathy and am not sure she used the word peripheral or not but I will make a point of finding that out next time.
It is both interesting and comforting to know how it feels on the doctor side.
I am going to talk with my new PCP about finding a new neuro like you said. Neither I nor her are incredibly invested at this point. So, changing now would be OK.
The: We can work through this” is so comforting.
Thank you Mama Quix!
And thanks to all of you----now Upward and onwards!
(((((Red))))
Red, if this is the neuro that diagnosed PPMS it is possible she is dead wrong and you could be receiving treatment you need. If she gave that diagnosis without treating you HERSELF over a period of a year (and I don't care how many MS symptoms you had over the years prior to seeing her), it is possible because you were not treated things went south. My own experience is proving that true. With help I am feeling stronger each day. (errrr...not with the breathing but we are working on that). My vote:
New neuro
New neuro
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