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Test results in - results given by phone

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Old 07-08-2008, 04:27 PM   #1
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Default Test results in - results given by phone

My GP called a week ago Monday to tell me that he finally received the test results back from my NCV. He told me that the results were showing that there was some sort of neurological disease going on??

He said that they did in fact find that there is a conduction block in several nerves in my lower rt leg and foot. ( I think I am developing drop foot in that foot). and slowing of the velocity in both upper and lower extremities on the right side. (the left side was not tested).

Anyway, he said he was going to set up another appointment with my neurologist ( still waiting on the appointment to be set up).

I told him on the phone that I was experiencing new sx. One of which was for a couple of days when I got up in the morning I was not able to walk properly. Had to hold onto something and really force my legs to move. He didn't say much just that he would set up the appointment.

I'm definately having some problems walking (hubby is noticing it too) but I can still do it on my own so I guess it's not that bad.

I guess I'm venting here (sorry I'm a little frustrated today)!
Charcot-Marie-Tooth Disease Type 1A
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Old 07-09-2008, 10:50 AM   #2
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My Mood: Test results in - results given by phone
Heart Hi Lynxgal!

I am glad you have joined with us!

I am sorry it has taken me awhile to respond...this was not intentional...please do not take this personally.

(I have been handling posts in a "hit or miss" manner, while so busy. I try to write whenever I am able to do so..which is sporadically right now! I have been very busy trying to get things done before surgery...tomorrow.)

This must be a very difficult time for you and for your husband?

First, allow me to tell you how sorry I am that you are having to deal with this!

Lynxgal, I have "similar" testing results...and some understanding of how chalenging and frustrating this can be. We all do understand how long all of the testing, and repeated testing usualy takes, and we certaily can empathize with you.

It is fine for you to share about your frustration and any other concerns, fears, anger, any feelings at all!

It is not unusual for testing to go on for years.

However, I would encourage you to do your best to "push" for an appointment as soon as possible.

I am not intending to "frighten you," in any way.

I am concerned, however, with the test results thus far and the fact that you are having additional symptoms and new difficulties.

If any treatment intervention is possible, it is important that this be determined...and that you have any pertinent treatment as soon as possible.

Now...this all does take time, however, your condition should not be allowed ot progress if a viable intervention can be attempted.

I do not know how your primary care's office works best? By this, I mean..I do not know how this particular office/doctor is more motivated to advocate for the earliest appointment possible.

It has been my experience that even very good primary care docs often do not understand neurology extremely well and they do not always understand the importnace of someone needing an appointment sooner , rather than later.

Have you been assigned to a neurologist? Is the doc that did the NCV testing also your neurologist? (Sometimes they are, sometimes not.)

If you have been assigned to a neurologist, can you also contact the neurologist's office, calling attention to your test results and to your imediate concerns?

If a neurologist does not know about your current difficulties, the neurologist cannot respond,(if s/he are likley to respond). So one of the first steps is making sure they are aware...that they "know."

Once they "know," we can then expect an appropriate response.

(Will you then get a sufficient response? I hope so! yet, I do not know your medical system and how it all works. It seems they are all different!)

I am going to try to share a brief account with you. This does not mean this same thing will happen to you! I am showing you why I am urging people to be careful about waiting too long!

This year, I was first involved in testing in a big teaching hospital. They were so "backlogged!" My primary care had fought with them for an earlier appt., as they'd wanted to see me six months later...after a major exacerbation had started!

They'd agreed to see me in a month, instead. They saw me, saw the urgency, and had ordered testing.

The testing was to be done by other doctors and the results were to be returned to my neurologist. This step was going to take three months, although the neurologist had ordered he'd wanted to see me within a month, with the test results. This was not going to work out within this system. it was too overbooked. They have many, many patients...all being kept in a "holding pattern."

I'd found my way out of that sytem, simply because a neurologist had left the system and was setting up private practice. Luckily for me, he is also board certified in administering neurophysiology testing.

As soon as I saw him...he'd looked at my left hand, saw it was wasting, (which was what we were trying to call attention to/ trying to get immediate help for) and he'd said, "We never let that wait!"

He then referred me immediatley to an upper extremeity orthopedic surgeon. The surgeon walked in and had said, immediately: "We have to do surgery just as soon as we possibly can in order to try to save your hand!" "We never, ever let something like that wait!"

I had been stuck in a system of doctors not really paying attention. They were "passing the buck," etc. In the meantime, my hand was rapidly wasting!

I had called the original neurologst's office every other day with more and more difficulties and they'd just kept prescribing meds...of all types...to try to hold me until they system could complete EMG/NCV. Duh! In my case, the meds were not any I would ever take and...they were not particularly appropriate for the situation. (I have this confirmed by another neurologist and two pharmacists.)

Although my "original" neurologist is a neuropathy expert, he would not talk with me after his first appointment (or until all testing ws done) and some very unqualified nurse was trying to communicate back and forth between us. He would not talk with me directly.

(Now do not misunderstand...I think nursese are great! Many are very bright and very well trained. Some are hired into positions they just are either not ready for yet...or may never be ready for. The recommendations this particular nurse would make were not any I would take seriously, for sure.)

Now..I have permanent hand damage. (You can see my thread about "Surgery this week.") Maybe this damage could not have been prevented? Maybe it could have been? We will find out tomorrow morning just what is going on, once the surgeon opens up my arm and takes a look!

Even if we can stop the atrophy now, there is no expectation that I can regain the strength and the muscle tone in my hand. (It is atrophied. I wish I could show you a picture...because I do not want this to happen with anyone else, if it can be prevented!)

It is very important to try to discern when we can and when we cannot wait! This is especially the case when we are not neurologosts/surgeons ourselves...we are depending upon them!

I had never though my neurologist would let me down like this! We have worked together for almost 18 years! We had become good friends. We have mutual friends in common! I am "stunned!" The system in which he practices is supposed to be the best in this State. He is listed as a neuropathy expert, and is widely known as such. Yet, the entire system is so very "broken," it matters not if I am seeing a neuropathy specialist or not!

Again, I do not mean to "frighten" you.

Yet, I do not want to see you and/or anyone else lose function if you do not have to lose.

That might be a good point for you to "use" in any conversations with your primary care doctor and/or with neurology: You do not want to lose function at all..if this can be helped!

Maybe other here can help to list factors which lead them to advocate harder/faster and how they do so?

Maybe this is a good thread to start with such a title?

(I am pressed for time right now...due to surgery tomorrow. However, I could not let your post go. I had to write to you.)

Please look after yourself very, very well!

If you are feeling too ill to do so, is there someone able to help to advocate for you with your doctors?

I wish you the best.

Many, many blessings~
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dizzie lizzy (07-09-2008), lynxgal (07-10-2008)
Old 07-10-2008, 09:41 AM   #3
Join Date: Aug 2006
Location: metro DC suburbs
Posts: 2,576
Default Lynxgal? Do not panic please....

That 'something' that is going on is a validation of your pain. Plain and simple.
Now, it sounds as if your doc and hopefully your new neuro will/are working on finding out what IS going on and then what things [if any] can be done to help you. So far, so good - silly tho it may seem rite now. Hey! It's NOT all in your head!
Since there are so many factors that can cause, contribute to, or affect many neuropapthies, it's kind of like reaching into a 'grab bag' and picking one out that seems sort of right.
I've found that my approach worked for me...I KNEW something was wrong, that the first neuro I'd seen had essentially 'blown me off', and I saw two equal or higher rated neuros that confirmed that I DID have a problem. It took me 6 months to know that neuro #1 wasn't 'working' and another 6 months w/ neuro's #2&3 working together [at my insistence] to get things together and we all got it right! I know I was lucky-but, you have to stick to your guns, be factual...write things down in chronological order..quick bullets, and keep things short, sweet and serious. I didn't cry until after each initial visit w/Neuros #2&3! I did cry with relief then for sure!
As for that 'freezing' when you get up in the morning? I call it my getting my gyroscope reset time. I know it's hard to go slow at such times, but you MUST. Broken bones only make things worse in the long run and I can attest to this truly!
Do not forget tho, to ask your GP or Neuro for some PT! Believe it or not, this stuff really can help! Docs don't think of it as a rule, but when you ask, litebulbs usually go off, and it's always OK'ed. Just be sure to ask for some sort of 'program' that you can learn to do and keep up at home. This way you will have a few simple tools to help you maintain some basic balance and strength. Lots of the exercises help keep you from doing that listing duck-walk thing.
Focus on finding out about the 'what is wrong' part. Once that's narrowed down, you can then address the 'what to do about it' part.
DejaVu is right that you HAVE to tell them about new or worse problems-they aren't psychic, and you have to be concise in what is happening and how. Doing that chronological/calendar thing is useful in this whole process. If you don't write it down now, you'd be surprised how easily youcan forget key things say...six months from now? Sometimes, these 'bits' of info are very important. Sometimes not?
Hope this helps! 's - j
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lynxgal (07-10-2008)
Old 07-10-2008, 05:49 PM   #4
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Default Thank You

Thank you both! I have been keeping a detailed journal for the last 16 months. Things just seem to be really progressing in the last couple of weeks.

Deja...thank you for the advice. I still don't have an appointment with a neuro yet but I did call my GP and they are going to request it again. I think I am going to fax a letter to the neurologists ofc on Monday if I have not heard anything by then because they never return my calls. I will use your line that you suggested.

I got the actual report today and will post the results in a new thread...maybe someone here will understand all that mumbo jumbo.
Charcot-Marie-Tooth Disease Type 1A
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