EMG-NCT Results are In

[RedFlame]

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?

[MsWobbles]

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

[RedFlame]

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

[michelleislay]

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

[tonyad]

  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


  

[RedFlame]

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

[Sparkysarah]

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 ;)