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?
Wow. I don't even know where to begin.
The doc. First, this doctor is a nut job. No matter what she shouldn't be treating you that way.
CT. Second, did she prescribe physical therapy for your arms? This is a must. You cannot heal if you have only been instructed to wear splints. Splints will not help you heal, bottom line. I'm not a doctor -- but I am ergonomist and I know a lot about this problem. Also read this: http://www.ninds.nih.gov/disorders/carpal_tunnel/detail_carpal_tunnel.htm#115123049
Neuropathy. As far is Neuropathy, when she said "we don’t know the source of yours because you don’t have diabetes” ... what has she done to find the source? Aren't there many sources other than diabetes? Have you been tested for them?
B12. I had low B12 and had to take shots -- my doc never did anything to find out why either. Does anyone here know what tests they might do to find out the cause? Also, does your PCP have you taking a daily supplement? Mine did.
Vit D. Same issue there -- the doc put me on heavy Vit D pills until it was at the right level, and now she told me to take a supplement.
As for a MS diagnosis -- as a new patient who was "lucky" to get a "quick" diagnosis, I don't know much about all the testing involved. The standard tests for me eliminated any other disease and my initial event was a very clear and common event for MS (vision issues).
You must be just drained from this appointment. I'm so sorry this happened and that I don't have more knowledge to help.
Quix?
Take care,
Jean
The doc. First, this doctor is a nut job. No matter what she shouldn't be treating you that way.
CT. Second, did she prescribe physical therapy for your arms? This is a must. You cannot heal if you have only been instructed to wear splints. Splints will not help you heal, bottom line. I'm not a doctor -- but I am ergonomist and I know a lot about this problem. Also read this: http://www.ninds.nih.gov/disorders/carpal_tunnel/detail_carpal_tunnel.htm#115123049
Neuropathy. As far is Neuropathy, when she said "we don’t know the source of yours because you don’t have diabetes” ... what has she done to find the source? Aren't there many sources other than diabetes? Have you been tested for them?
B12. I had low B12 and had to take shots -- my doc never did anything to find out why either. Does anyone here know what tests they might do to find out the cause? Also, does your PCP have you taking a daily supplement? Mine did.
Vit D. Same issue there -- the doc put me on heavy Vit D pills until it was at the right level, and now she told me to take a supplement.
As for a MS diagnosis -- as a new patient who was "lucky" to get a "quick" diagnosis, I don't know much about all the testing involved. The standard tests for me eliminated any other disease and my initial event was a very clear and common event for MS (vision issues).
You must be just drained from this appointment. I'm so sorry this happened and that I don't have more knowledge to help.
Quix?
Take care,
Jean
Oh Red :-(
I wish I could give you a big old hug in person! I hate that you are being treated so badly by your doctors. I hope you get some answers from these current tests :-(
((hugs))
~Jess
I wish I could give you a big old hug in person! I hate that you are being treated so badly by your doctors. I hope you get some answers from these current tests :-(
((hugs))
~Jess
I can only imagine the look on your face when this doctor was talking to you that way. I am so emotional that I would have left in tears as I always do. Good luck to you my friend.
Pamela
Pamela
Red:
I am so sorry that you are going through all of this sh*t with doctors. It's bad enough when your health is declining, but then to get put through the indignity of all of this.
The backlash of this is that once one goes through too many of these experiences, its very hard not to develop an attitude (thus your sarcasm) and keep and open mind to be receptive to new doctors.
I just emailed a neurosurgeon at Yale for consultation as a surgical candidate for DDD. Specifically picked this one as his long list of interests includes both the back and brain. I very briefly outlined my complex clinical picture and test results, along with my PCP's recommendation for a second opinion from a neuro...hope I picked the right one.
So F'ing hard to find a good doctor if no one comes up with any names for you.
Almost feel like trying to find a good doc is like the gamble one takes with online dating services (something I would never try)!
Audrey
I am so sorry that you are going through all of this sh*t with doctors. It's bad enough when your health is declining, but then to get put through the indignity of all of this.
The backlash of this is that once one goes through too many of these experiences, its very hard not to develop an attitude (thus your sarcasm) and keep and open mind to be receptive to new doctors.
I just emailed a neurosurgeon at Yale for consultation as a surgical candidate for DDD. Specifically picked this one as his long list of interests includes both the back and brain. I very briefly outlined my complex clinical picture and test results, along with my PCP's recommendation for a second opinion from a neuro...hope I picked the right one.
So F'ing hard to find a good doctor if no one comes up with any names for you.
Almost feel like trying to find a good doc is like the gamble one takes with online dating services (something I would never try)!
Audrey
thanks you guys!
I think I am more puzzled at this point. I worry about 'falling through the cracks' . I really don't want to undergo more tests. As far as the B12 and vitamin D thing, I really thought it was an MS thing. I assumed that the numbness was due to MS too. Everything seemed like it was part of a whole.
As far as my diagnosis, I don't really feel confident that the diagnosis won't be taken away. Everything seems so tenuous right now. If I do have the progressive type then I woudn't receive treatment anyway.
I take some responsibility for some of this doctor stuff. There may have been times where I pushed the envelope hoping to get asnwers sooner. These people didn't go into medicine to hurt people; so there is something else happening too. I hope I don't pressure them into defensive medicine.
I have a new PCP that I really like. She seems to truly care and is interested in my case. I do feel like I have her to lean on and go to if I get dumped somewhere down the line. In the beginning of this process I had about 5 docs, now just my pcp and neuro. That's a relief. I don't think this neuro will quit, but we will see.
At this point I will stop seeking answers, or at least take a break. As long as my pain needs are taken care of then I don't care.
thanks everyone!
I think I am more puzzled at this point. I worry about 'falling through the cracks' . I really don't want to undergo more tests. As far as the B12 and vitamin D thing, I really thought it was an MS thing. I assumed that the numbness was due to MS too. Everything seemed like it was part of a whole.
As far as my diagnosis, I don't really feel confident that the diagnosis won't be taken away. Everything seems so tenuous right now. If I do have the progressive type then I woudn't receive treatment anyway.
I take some responsibility for some of this doctor stuff. There may have been times where I pushed the envelope hoping to get asnwers sooner. These people didn't go into medicine to hurt people; so there is something else happening too. I hope I don't pressure them into defensive medicine.
I have a new PCP that I really like. She seems to truly care and is interested in my case. I do feel like I have her to lean on and go to if I get dumped somewhere down the line. In the beginning of this process I had about 5 docs, now just my pcp and neuro. That's a relief. I don't think this neuro will quit, but we will see.
At this point I will stop seeking answers, or at least take a break. As long as my pain needs are taken care of then I don't care.
thanks everyone!
I am sorry for the way she talked to you, on the other hand she was mad at the doctors for not following through on things that she truly believes should have been followed up on. Sounds to me like she is angry with them not you, but she still shouldn't talk to you like this.
I am hoping that she takes all this information and gets to work on it and finds you some relief.
I personally thought that vitamin B12 and D deficiencies were part of MS also, well maybe not a part of it but that it goes hand in hand. I just got my vitamin levels tested and will get the results Tuesday when I go back to my PCP.
Glad to hear that you found a PCP that you like and feel like you can lean on. Maybe she will end up being the one who pushes for the answers you deserve.
I am with you when you say that you will stop seeking answers, I have decided to let everything play out and eventually I will get the treatments I need to help me. As long as I control the burning and pain I am just living.
Take care,
Paula
I am hoping that she takes all this information and gets to work on it and finds you some relief.
I personally thought that vitamin B12 and D deficiencies were part of MS also, well maybe not a part of it but that it goes hand in hand. I just got my vitamin levels tested and will get the results Tuesday when I go back to my PCP.
Glad to hear that you found a PCP that you like and feel like you can lean on. Maybe she will end up being the one who pushes for the answers you deserve.
I am with you when you say that you will stop seeking answers, I have decided to let everything play out and eventually I will get the treatments I need to help me. As long as I control the burning and pain I am just living.
Take care,
Paula
I hope you get some answers with the tests she did order. She sounds like my Dr's SISTER !!!!!!!!!!! (trying to make you laugh now).....
I said to Rendean that we need to start a |I HATE DR"S forum, and we can all join. LOL .......
I honestly don't know where Dr's get off degrading us, and making us feel worse than we already do. I wish some of them could live through one bad day of ours, alnd see how they understand it.
I have a problem verbalizing the symptons, alnd the Dr. gets to mad at me, cause I get all frustrated and she slams things down too.
Then when she told me " I'm a general neurologist, and only dabble in MS" I thought I was going to have a stroke right then and there.
Keep going though, and we all will too, because we HAVE to. Get your tests done, and see what they say. To be frank, I have not even had those done yet, and it has been 2 years.s I do know that I have low potassium and was in the hospital with stuff, but I was NEVER told what all the blood work was for. Iwas on so much morphine that I did not really care at that point.
Hope you don't ever get to that..... keep pushing, and let's start the CLUB.!!!
Take care, and
Happy Canadian Thanksgiving everyone !!!!
Enjoy, love, laughter and family,
Candy
I said to Rendean that we need to start a |I HATE DR"S forum, and we can all join. LOL .......
I honestly don't know where Dr's get off degrading us, and making us feel worse than we already do. I wish some of them could live through one bad day of ours, alnd see how they understand it.
I have a problem verbalizing the symptons, alnd the Dr. gets to mad at me, cause I get all frustrated and she slams things down too.
Then when she told me " I'm a general neurologist, and only dabble in MS" I thought I was going to have a stroke right then and there.
Keep going though, and we all will too, because we HAVE to. Get your tests done, and see what they say. To be frank, I have not even had those done yet, and it has been 2 years.s I do know that I have low potassium and was in the hospital with stuff, but I was NEVER told what all the blood work was for. Iwas on so much morphine that I did not really care at that point.
Hope you don't ever get to that..... keep pushing, and let's start the CLUB.!!!
Take care, and
Happy Canadian Thanksgiving everyone !!!!
Enjoy, love, laughter and family,
Candy
Many hugs to you darling. I cannot imagine what you are going through. Your description was heartbreaking. My thoughts are with you. Please, please, please don't give up.
Love, Julie
Love, Julie
Red:
Just a thought here. Personality changes, including aggression, can be associated with brain lesions. When I think about the history of your posts, including the tone, am I seeing some kind of personality change?
If so, this is something that you should bring up with your doctors. If you think that you have become more aggressive and are not always able to control it, this is especially important to mention. Yes, you have been put through the mill and that could explain things, but there might be another reason. You are the one who best knows the answer.
Hang in there, darlin'. You are more than worth it and deserve some peace of mind and relief from your physical and emotional pain.
Hugs,
Audrey
Just a thought here. Personality changes, including aggression, can be associated with brain lesions. When I think about the history of your posts, including the tone, am I seeing some kind of personality change?
If so, this is something that you should bring up with your doctors. If you think that you have become more aggressive and are not always able to control it, this is especially important to mention. Yes, you have been put through the mill and that could explain things, but there might be another reason. You are the one who best knows the answer.
Hang in there, darlin'. You are more than worth it and deserve some peace of mind and relief from your physical and emotional pain.
Hugs,
Audrey
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 ;)
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
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
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
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
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
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!
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
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
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!!
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
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
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
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
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
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