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 --
I just found out that there will be another event where she will speak--it sounds similar to the NMSS event, but it is free and it is on a weeknight. Here are the details:
Henry Ford Health System will hold an MS discussion with Dr. Mirela Cerghet, M.D. She will discuss MS predispositions, symptoms, treatments, and available community resources.
Date: Monday, October 25, 2010
Time: 6:30 pm -- 8 pm
Location:
Henry Ford West Bloomfield Hospital
6777 W. Maple Road, West Bloomfield
Second Floor Conference Room
To register, call 1-800-HenryFord.
The event is free.
I just found out that there will be another event where she will speak--it sounds similar to the NMSS event, but it is free and it is on a weeknight. Here are the details:
Henry Ford Health System will hold an MS discussion with Dr. Mirela Cerghet, M.D. She will discuss MS predispositions, symptoms, treatments, and available community resources.
Date: Monday, October 25, 2010
Time: 6:30 pm -- 8 pm
Location:
Henry Ford West Bloomfield Hospital
6777 W. Maple Road, West Bloomfield
Second Floor Conference Room
To register, call 1-800-HenryFord.
The event is free.
Thanks Jean, I had saved her name for reference so I am glad that there will be even more of an opportunity! I will definately go find out what I need to do.
Thank you
Red
Thank you
Red
Red,
If you want to get a sense of what my doc is like you can go to the Ask the Expert event sponsored by the National MS Society Michigan Chapter. She will be one of the panelists. Her name is Dr. Mirela Cerghet. I think she is good with the diagnosis area and once one is reached, she presents you with the treatment options -- she councils you on them, but gives you the choice in your treatment.
I barely wait at all when I have an appointment -- they usually call me back after 5 minutes or so -- which is great because I hate waiting.
The Ask the Expert event is on Saturday, October 23, 2010 9 am -- 11:30 am at:
Troy Community Center
3179 Livernois
Troy, MI
For more information, visit http://main.nationalmssociety.org/site/Calendar/991355731?view=Detail&id=221750
I've registered (it's $7), but I'm not sure if I'm able to go yet.
Jean
If you want to get a sense of what my doc is like you can go to the Ask the Expert event sponsored by the National MS Society Michigan Chapter. She will be one of the panelists. Her name is Dr. Mirela Cerghet. I think she is good with the diagnosis area and once one is reached, she presents you with the treatment options -- she councils you on them, but gives you the choice in your treatment.
I barely wait at all when I have an appointment -- they usually call me back after 5 minutes or so -- which is great because I hate waiting.
The Ask the Expert event is on Saturday, October 23, 2010 9 am -- 11:30 am at:
Troy Community Center
3179 Livernois
Troy, MI
For more information, visit http://main.nationalmssociety.org/site/Calendar/991355731?view=Detail&id=221750
I've registered (it's $7), but I'm not sure if I'm able to go yet.
Jean
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
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))))
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
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
Tonya and WAF--Thank you so much! It's good to be reminded of that in the midst of everything that is going on.
At the end of the day, it comes down to compassion, empathy and group support. Though we get caught up with things like this at times. I believe that EVERYONE here desires to care and be cared for.
I will remember the PM Tonya!
Now it's upward and onward!
Red
At the end of the day, it comes down to compassion, empathy and group support. Though we get caught up with things like this at times. I believe that EVERYONE here desires to care and be cared for.
I will remember the PM Tonya!
Now it's upward and onward!
Red
You have the right to have YOUR own feelings and emotions! they are how you feel and your need to express them are totally validated.
I do feel sad when you feel like you have to keep apologizing to everyone! Just remember our converstaions through PM :)
~Tonya
Red,
All you need is to take that Panda (YouTube - "never say no to Panda") with you on your visits to your neuro - no more problems!!!
WAF
P.S. You are much-loved here!!
All you need is to take that Panda (YouTube - "never say no to Panda") with you on your visits to your neuro - no more problems!!!
WAF
P.S. You are much-loved here!!
twopack,
Our community is very important to me! I have always felt supported. The fact that we only have words here makes communication difficult I know. I responded to everyone 3 times and thanked everyone for the support and caring they offer so willingly. There was a couple of times that felt accusatory. I should have just let that be.
I do thank everyone for being so helpful and for the fact that they so obviously care. I hope at least some of that gratitude made its way through.
Your description about the parallel conversation in one room is right on. Thank you for helping me see that. I was saying things that day that had nothing to do with what she was doing or saying. I spewed out different concerns, fears and thoughts all over the room that day.
I think I am afraid that my eventual need for powerchair, handcontrols on my van/ and other things will get lost in the shuffle. Like you said, all things in time and I have to remember that this is a process.
I feel afriad and raw and I don't know why. Perhaps that is where I should have started. But I really wasn't sure how I was feeling when I began the thread.
Just when I feel like I am doing better with all of this I act like a jerk. I behaved badly and that was something I tried to convey in this thread too.
I am really trying hard to be quiet and allow my doctors to do their job. I don't know why I keep trying to second-guess them and thereby put a wrench in everything. I wish there were a way to lock my jaw during my appointments!
Yes, I do have a diagnosis though it feels tenuous at times.
Thank you Mary for taking so much time to read all of this through! And thanks to all of you for your support. I don't know where I would be without it.
Thanks to all
Red
Our community is very important to me! I have always felt supported. The fact that we only have words here makes communication difficult I know. I responded to everyone 3 times and thanked everyone for the support and caring they offer so willingly. There was a couple of times that felt accusatory. I should have just let that be.
I do thank everyone for being so helpful and for the fact that they so obviously care. I hope at least some of that gratitude made its way through.
Your description about the parallel conversation in one room is right on. Thank you for helping me see that. I was saying things that day that had nothing to do with what she was doing or saying. I spewed out different concerns, fears and thoughts all over the room that day.
I think I am afraid that my eventual need for powerchair, handcontrols on my van/ and other things will get lost in the shuffle. Like you said, all things in time and I have to remember that this is a process.
I feel afriad and raw and I don't know why. Perhaps that is where I should have started. But I really wasn't sure how I was feeling when I began the thread.
Just when I feel like I am doing better with all of this I act like a jerk. I behaved badly and that was something I tried to convey in this thread too.
I am really trying hard to be quiet and allow my doctors to do their job. I don't know why I keep trying to second-guess them and thereby put a wrench in everything. I wish there were a way to lock my jaw during my appointments!
Yes, I do have a diagnosis though it feels tenuous at times.
Thank you Mary for taking so much time to read all of this through! And thanks to all of you for your support. I don't know where I would be without it.
Thanks to all
Red
Wow Red, this is just all so overwhelming to respond to. It's clear the visit was a difficult one to experience and even more difficult to describe afterwards. It's all so hard when we are limited to the written word here and the electronic tools that would help express our true emotions and speech inflections are all but non-existent.
It's clear you are upset with the community at this point. Perhaps we don't understand what you are needing any better than the doctor. I'm going to try to limit myself to a few observational statements. It is my intention to be helpful. I'm not sure what you will consider supportive.
Although what you wrote probably represents sample snipetts more than a conversational transcript, all I could think over and over, was that this sounded like parallel conversations in one room. You and the doc are in the same room and talking about similar things but never tuned into each other. You talk beside each other but seldom with each other. Whatever is necessary to move the two of you closer to a common agenda needs to happen very soon IMO if this is to be a therapeutic professional relationship.
With MS you will need long-term care and treatment in concert with individuals you have a mutual respect and concern for. On this day, both of you were clearly angry. You may not have been each other's original targets but you sure were the triggers. If this doc has a fair amount of what you've been looking for in a doc, it may be worth your while to cultivate an atmosphere where you can both accomplish some goals during visits.
Just to be clear. It's my understanding that the word neuropathy DOES indicate a disease process. It will however require a modifying adjective to indicate which potential culprit is guilty of causing it's damage. That in turn will determine treatment.
Yes, people with MS are likely to have low B12 and vitamin D levels. But sometimes, rather than taking continuous supplements, it is possible to treat an entirely different underlying condition and eliminate the problem. At any rate, it's the doc's responsibility to track progress.
When patient are diagnosed with primary progressive MS that isn't the end of the journey. It's true they won't receive treatment with DMD's like Avenox, Rebif and Copaxone. They certainly DO receive treatment. Symptomatic treatment becomes even MORE important when a person can't anticipate periodic returns to relative symptom free intervals.
Red, I know you don't want to be poked and prodded any more. The doc may need to do some more of that to pinpoint things SHE needs to know, even if it isn't things you care about. Try to understand that will help you at some point.
It sounds to me like your #1 priority at the moment is to become or stay mobile by finding the best chair to meet your present and future needs. That IS important. You need to enlist her help to identify and accomplish your most pressing need. Unfortunately, you may have to play on her end of the field first and you may have to wait until later for something that would benefit you now. That, my friend, is reality.
Red, I remember when you first got here. You DID NOT have a diagnosis. You DID NOT have your pain under control or any idea how to get a doctor to help you. You HAVE made progress. I wish it was happening faster for you. I wish it was less frustrating for you. I wish your trust in medical providers hadn't been ripped away in the past. The truth remains that the treatment of this chronic progressive debilitating disease is contained in a process, not a person or a script.
I hope I have seen or said something, anything that is helpful. Even if there is nothing, remember this......Each person who reached out here invested time and energy, not in a random answer, but in YOU because we cared.
Mary
It's clear you are upset with the community at this point. Perhaps we don't understand what you are needing any better than the doctor. I'm going to try to limit myself to a few observational statements. It is my intention to be helpful. I'm not sure what you will consider supportive.
Although what you wrote probably represents sample snipetts more than a conversational transcript, all I could think over and over, was that this sounded like parallel conversations in one room. You and the doc are in the same room and talking about similar things but never tuned into each other. You talk beside each other but seldom with each other. Whatever is necessary to move the two of you closer to a common agenda needs to happen very soon IMO if this is to be a therapeutic professional relationship.
With MS you will need long-term care and treatment in concert with individuals you have a mutual respect and concern for. On this day, both of you were clearly angry. You may not have been each other's original targets but you sure were the triggers. If this doc has a fair amount of what you've been looking for in a doc, it may be worth your while to cultivate an atmosphere where you can both accomplish some goals during visits.
Just to be clear. It's my understanding that the word neuropathy DOES indicate a disease process. It will however require a modifying adjective to indicate which potential culprit is guilty of causing it's damage. That in turn will determine treatment.
Yes, people with MS are likely to have low B12 and vitamin D levels. But sometimes, rather than taking continuous supplements, it is possible to treat an entirely different underlying condition and eliminate the problem. At any rate, it's the doc's responsibility to track progress.
When patient are diagnosed with primary progressive MS that isn't the end of the journey. It's true they won't receive treatment with DMD's like Avenox, Rebif and Copaxone. They certainly DO receive treatment. Symptomatic treatment becomes even MORE important when a person can't anticipate periodic returns to relative symptom free intervals.
Red, I know you don't want to be poked and prodded any more. The doc may need to do some more of that to pinpoint things SHE needs to know, even if it isn't things you care about. Try to understand that will help you at some point.
It sounds to me like your #1 priority at the moment is to become or stay mobile by finding the best chair to meet your present and future needs. That IS important. You need to enlist her help to identify and accomplish your most pressing need. Unfortunately, you may have to play on her end of the field first and you may have to wait until later for something that would benefit you now. That, my friend, is reality.
Red, I remember when you first got here. You DID NOT have a diagnosis. You DID NOT have your pain under control or any idea how to get a doctor to help you. You HAVE made progress. I wish it was happening faster for you. I wish it was less frustrating for you. I wish your trust in medical providers hadn't been ripped away in the past. The truth remains that the treatment of this chronic progressive debilitating disease is contained in a process, not a person or a script.
I hope I have seen or said something, anything that is helpful. Even if there is nothing, remember this......Each person who reached out here invested time and energy, not in a random answer, but in YOU because we cared.
Mary
I apologize for my thread that seems to have become confusing. This thread seems to have taken a life of it's own.
I posted the original post becuase of the difficulty of the exchange between me the patient and my doctor----yes, the general neurologist who said I have MS.
Nowhere did I say anything about not seeing her -----or her being a bad person/doctor or dumping her or anything like that. I simply talked about this becuase of the neuropathy thing. I was trying to tease out what was the MS or what was the neuropathy.
No one is all black and white but rather the gray inbetween.
The reference about the nerve conduction test that was ordered incorrectly happened a year ago. This was a different doctor entirely.
What I tried to convey was the difficulty of the conversation and my concerns about the neuropathy.
I wasn't angry when I started this thread, I didn't attack her or myself. I was more bewildered than anything.
So far it has been suggested that I have had a personality change with a possible "lesion somewhere causing the personality change", bringing about some type of aggression. Now being heartless and inconsiderate of my physician.
What I do feel is hurt.
Thank you to all of you who have been so supportive!
I posted the original post becuase of the difficulty of the exchange between me the patient and my doctor----yes, the general neurologist who said I have MS.
Nowhere did I say anything about not seeing her -----or her being a bad person/doctor or dumping her or anything like that. I simply talked about this becuase of the neuropathy thing. I was trying to tease out what was the MS or what was the neuropathy.
No one is all black and white but rather the gray inbetween.
The reference about the nerve conduction test that was ordered incorrectly happened a year ago. This was a different doctor entirely.
What I tried to convey was the difficulty of the conversation and my concerns about the neuropathy.
I wasn't angry when I started this thread, I didn't attack her or myself. I was more bewildered than anything.
So far it has been suggested that I have had a personality change with a possible "lesion somewhere causing the personality change", bringing about some type of aggression. Now being heartless and inconsiderate of my physician.
What I do feel is hurt.
Thank you to all of you who have been so supportive!
I'm confused. Is this "general neurologist" you speak of the same one who insisted you did have MS, going against the team of university clinic MDs who concluded you did not have MS? If she is the same doctor, I suggest you overlook her rough-and-tumble bedside manner. She is your ally.
To her credit, from what you described, she does seem truly interested in your history and current status regarding past lab testing etc. and that puts her way ahead of many other doctors I have experienced. She actually listens to you and responds to your answers to her questions - a very good sign, indeed!! She is interested in you, inquisitive about your past experience, and seems to want to help! She is taking the time to hear you and ask questions.
Remember, she may be experiencing some flack about standing firm on your MS diagnosis despite the university MDs' pronouncement.
I know it is not pleasant for you feeling under fire during your visits to her office, but remember that sometimes the MDs with the worst bedside manners turn out to be the best doctors!!
Good luck with her!
WAF
To her credit, from what you described, she does seem truly interested in your history and current status regarding past lab testing etc. and that puts her way ahead of many other doctors I have experienced. She actually listens to you and responds to your answers to her questions - a very good sign, indeed!! She is interested in you, inquisitive about your past experience, and seems to want to help! She is taking the time to hear you and ask questions.
Remember, she may be experiencing some flack about standing firm on your MS diagnosis despite the university MDs' pronouncement.
I know it is not pleasant for you feeling under fire during your visits to her office, but remember that sometimes the MDs with the worst bedside manners turn out to be the best doctors!!
Good luck with her!
WAF
Thanks michelle, It will be fascinating I'm sure. I was thinking about all that has happened for the past year.
I should should probably post more about docs I have had that were kind and compassionate to me. The rhuematologist I had, the family docs, nurse practitioners come to mind.
The higher I go up the food chain-- the more 'interesting' things get. The special specialists. And there have been medical errors during this time, and there have been times where I feel I was abused too.
But I digress----
Thanks!
Red
I should should probably post more about docs I have had that were kind and compassionate to me. The rhuematologist I had, the family docs, nurse practitioners come to mind.
The higher I go up the food chain-- the more 'interesting' things get. The special specialists. And there have been medical errors during this time, and there have been times where I feel I was abused too.
But I digress----
Thanks!
Red
ah red,
i can't believe another bad experience in the doc's office has happened to you.
i do however agree that it seems perhaps she was more disgruntled with the lack of follow up on the doc's end, so i maintain hope that she will still try to help you.
i can't understand the neuropathy for the life of me. to me it also seems as though she is just naming a symptom and that the chapter should in no way be closed at that.
want to hear something funny my neuro told me when i asked her about vitamin d...we are all deficient and should all be taking it! haahaaa!! just that. no interest in what my levels were at all.
red, i hope she proves her methods to be worthwhile...can't wait to hear what she has to say when the bloodwork comes in.
thinking of you!!
xo michelle
i can't believe another bad experience in the doc's office has happened to you.
i do however agree that it seems perhaps she was more disgruntled with the lack of follow up on the doc's end, so i maintain hope that she will still try to help you.
i can't understand the neuropathy for the life of me. to me it also seems as though she is just naming a symptom and that the chapter should in no way be closed at that.
want to hear something funny my neuro told me when i asked her about vitamin d...we are all deficient and should all be taking it! haahaaa!! just that. no interest in what my levels were at all.
red, i hope she proves her methods to be worthwhile...can't wait to hear what she has to say when the bloodwork comes in.
thinking of you!!
xo michelle
Hello, sorry you are having so many ups and downs!
I researched all of what you posted and came up w/ a lot of interesting info...........
Frequently the cause of a neuropathy cannot be identified and it is designated idiopathic.
Mononeuropathy is a type of neuropathy that only affects a single nerve. Carpal tunnel syndrome is one example of this. The "pins-and-needles" sensation of one's "foot falling asleep" (paresthesia) is caused by a compression mononeuropathy
http://en.wikipedia.org/wiki/Peripheral_neuropathy
This is from the Neuropathy Association:
You may find it harder and harder to walk. Your legs feel heavy. You have to drag yourself up the stairs. You find yourself losing your balance, not being exactly sure where your feet are; so, you stumble into things or fall. To keep your balance, you are likely to widen your way of walking, and your walking becomes less rhythmic or fluid.
As for your hands, you think you have a good grip on something, like your keys, but they drop right out of your hands. In the worst cases, you can end up in a wheelchair. Some neuropathies can be fatal.
Peripheral neuropathy symptoms and signs can vary in how they begin. Some neuropathies come on suddenly; others gradually over many years. There are three types of peripheral nerves affected, and symptoms depend on these nerves and their location:
Sensory Nerves: affect sensation
Autonomic Nerves: affect internal organ functions; and,
Motor Nerves: affect muscles.
Weakness in the Arms or Legs
Legs: Usually caused by damage to the motor nerves, leg symptoms often include difficulty walking or running; a feeling of "heaviness" in your legs; finding it takes a lot of effort just to climb the stairs; stumbling or tiring easily. Muscle cramps may be common.
Arms: In the arms, you may find it difficult to carry groceries, open jars, turn door knobs or take care of your personal grooming. A common frustration is dropping things.
http://www.neuropathy.org/site/PageServer?pagename=About_Symptoms
Mayo clinic also has some info.........
It's not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies.
These factors include:Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position, or repeating a motion many times — such as typing. (Carpal Tunnel)
http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=causes
Hope some of this info helps to answer some of your concerns. Thoughts and Prayers are w/ you. Hopefully it will still wind up to NOT be MS but rather something a bit easier to treat and / fix. Good Luck.
~Tonya
Thank you so much everyone! I love all the support here on our forum. Doctors become docs so they can help people. I think there have been medical errors and there have been times where I have gotten in the way by attempting to take the control of certain situations. The truth is that they ultimately have control, I can ask, but the control is theirs.
Hugs, Red
Audrey, I'm not sure where you sense the personality change. In the conversation I posted above, the doctor was angry before she came into the room. Her anger continued through the appt. I was passive aggressive a few times though. Can you help me see where the personality changes are happening? Thanks
Hugs, Red
Audrey, I'm not sure where you sense the personality change. In the conversation I posted above, the doctor was angry before she came into the room. Her anger continued through the appt. I was passive aggressive a few times though. Can you help me see where the personality changes are happening? Thanks
You are someone who seems to constantly come up against unsupportive doctors who mess you around and do not treat you with the respect you deserve. The only thing that we all can do to help you is to offer written support and this feels entirely inadequate.
I wish I could wave a magic wand and let the doctors exchange places with you for a day to make them understand what it is like living with all your physical problems. Hang in there and try and keep your faith.
With love and hugs
Sarah xxx ;)
I wish I could wave a magic wand and let the doctors exchange places with you for a day to make them understand what it is like living with all your physical problems. Hang in there and try and keep your faith.
With love and hugs
Sarah xxx ;)
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