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?
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
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
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
Hey Red,
I don't think your personality has changes one bit, if anything you have been rolling with a lot of punches w/this back and forth doc.
It is bewildering, it is confusing, and I've got to re-read your appt. experience to comment on it further.
Dang, you'd better put on that brace, lol... Hey, you were honest w/her at least! Not like in school when we'd say the doc ate it!
Like Ess and some others mention there has to be more follow up on some things. Hang in there girl! We know your grateful, and so are we!
-shell
I don't think your personality has changes one bit, if anything you have been rolling with a lot of punches w/this back and forth doc.
It is bewildering, it is confusing, and I've got to re-read your appt. experience to comment on it further.
Dang, you'd better put on that brace, lol... Hey, you were honest w/her at least! Not like in school when we'd say the doc ate it!
Like Ess and some others mention there has to be more follow up on some things. Hang in there girl! We know your grateful, and so are we!
-shell
I see I didn't comment about the neuropathy part, not that I'm any expert. Far from it.
Still, the kind of neuropathy she was talking about is definitely peripheral. The EMG/NCS testing picked that up. Yes, it's often caused by diabetes, but certainly not always. Sometimes no cause can be identified. I used to go to a PT whose father had no feeling from toes to mid-thigh. No one could say why, so they were just treating the symptoms.
We had a good discussion going a week or so back about neuropathy and neuropathic pain. If I can find it I'll bump it.
Red, you can have more than one neurological disorder, meaning from different causes. In addition to MS, I have essential tremor and small fiber neuropathy. Having one doesn't negate others. From what you've said, your neuro is not at all telling you you don't have MS.
ess
Still, the kind of neuropathy she was talking about is definitely peripheral. The EMG/NCS testing picked that up. Yes, it's often caused by diabetes, but certainly not always. Sometimes no cause can be identified. I used to go to a PT whose father had no feeling from toes to mid-thigh. No one could say why, so they were just treating the symptoms.
We had a good discussion going a week or so back about neuropathy and neuropathic pain. If I can find it I'll bump it.
Red, you can have more than one neurological disorder, meaning from different causes. In addition to MS, I have essential tremor and small fiber neuropathy. Having one doesn't negate others. From what you've said, your neuro is not at all telling you you don't have MS.
ess
Gosh, Red, this is a bad situation.
It seems to me that there was hostility on both sides, a little from you and a lot from her. Hers seems to have started before she came into the room, I agree. But when she asked you about the arm splints, she had a valid point. How can she tell how you're doing if you don't follow through on her instructions? If you had had the splints and still weren't better, that could have indicated that she was wrong in her diagnosis. Maybe you felt a bit sheepish about that, and things escalated from there. I'm just sayin'.
When she slapped folders around, that definitely wasn't about you. She was annoyed at doctors who hadn't followed through on your care. She was right about that, but she shouldn't have taken it out on you. She needs an attitude adjustment for sure, but her points had some validity. Although many MSers have D and B12 deficiencies, no cause and effect have been shown. Low B12 can be from quite a few causes, and pernicious anemia is one. That's a serious disease, but it's not all that hard to diagnose. Just giving someone a series of injections and then dropping the whole issue is not a responsible way to proceed.
Low D is becoming almost standard these days, and mucho more people have that than those who have MS. A level of 10 is extremely low, and needs treatment and follow-up. But just for the record, I have normal B12 and normal D, though my neuro wants my D a little higher.
It sounds as if your PCP has dropped the ball. You shouldn't be expected to know all this stuff, and that's why you have a PCP. He or she needs to get busy, or you need to find a better doc.
I hope you don't take my comments as chastising you, because they truly aren't meant that way. You've been through a huge amount, and although you have a diagnosis, there are still many unanswered questions. You are worn out, and understandably so.
So chin up! And follow up on those vitamin deficiencies and arn splints.
Hugs,
ess
It seems to me that there was hostility on both sides, a little from you and a lot from her. Hers seems to have started before she came into the room, I agree. But when she asked you about the arm splints, she had a valid point. How can she tell how you're doing if you don't follow through on her instructions? If you had had the splints and still weren't better, that could have indicated that she was wrong in her diagnosis. Maybe you felt a bit sheepish about that, and things escalated from there. I'm just sayin'.
When she slapped folders around, that definitely wasn't about you. She was annoyed at doctors who hadn't followed through on your care. She was right about that, but she shouldn't have taken it out on you. She needs an attitude adjustment for sure, but her points had some validity. Although many MSers have D and B12 deficiencies, no cause and effect have been shown. Low B12 can be from quite a few causes, and pernicious anemia is one. That's a serious disease, but it's not all that hard to diagnose. Just giving someone a series of injections and then dropping the whole issue is not a responsible way to proceed.
Low D is becoming almost standard these days, and mucho more people have that than those who have MS. A level of 10 is extremely low, and needs treatment and follow-up. But just for the record, I have normal B12 and normal D, though my neuro wants my D a little higher.
It sounds as if your PCP has dropped the ball. You shouldn't be expected to know all this stuff, and that's why you have a PCP. He or she needs to get busy, or you need to find a better doc.
I hope you don't take my comments as chastising you, because they truly aren't meant that way. You've been through a huge amount, and although you have a diagnosis, there are still many unanswered questions. You are worn out, and understandably so.
So chin up! And follow up on those vitamin deficiencies and arn splints.
Hugs,
ess
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