Have the NCV results...looks like sensory motor polyneuropathy of some sort...long!
 

Not sure if anyone here can help me understand this but I will post the "official results" right from the report .....Electromyogram Results:

1.Low amplitude right Peroneal motor response from
extensor digitorum brevis with slowed conduction velocity between popliteal fossa and ankle

2.Low amplitude right tibial motor response from abductor hallucis with slowed conduction velocity between popliteal fossa and ankle.

3.Normal right median motor response from APB with slowed conduction velocity between elbow and wrist.

4.Normal amplitude, right ulnar motor response from the hypothenar eminence with slowed conduction velocity between distal humerus and wrist.

5.Low normal amplitude in the right peroneal motor response from tibialis anterior with slowed conduction velocity across the fibular head.

6.Normal amplitude, right sural sensory response with slowed conduction velocity.

7.Absent right superficial peroneal sensory response.

8.Low amplitude right median sensory response from the second day (sic) with slowed conduction velocity across the wrist. The right ulnar fifth and radial first digit sensory responses are of normal amplitude and slowed conduction velocity.

9.Absent right medial and lateral plantar sensory responses.

10.Elevated right tibial H-reflex latency.

INTERPRETATION:

The above study is abnormal and is consistent with a length dependent sensory motor polyneuropathy. The patient's foot temperature was low as the time of testing; however, this alone does not explain the findings, which remain consistent with neuropathy.

Investigation into causes of neuropathy are recommended.

Tests
 

Hi, I'm sure you'll have more technical people respond..... but your test looks like mine did early on - a primarily sensory nueropathy with motor involvement too... I have absent sensory nerves and when the docs look at the biopsy done (I had a sural nerve - which shows large and small fibers - I believe a skin biopsy will show the same type damage but not small fiber biopsy?).... anyway, I have almost a complelete loss of large mylinated nerve fibers and also loss of some small mylinated (accounting for the sensory loss) - and also not such a drastic loss of unmylinated fibers both small and large, and nerve axon degerneration all through the nerve.... this confirmed the damage more conicisely then the NCS-EMG - of which I've more then a few - the expertise of the doc doing the test and their ability to interpret the results is very important.

In short, yes, sounds like you definately have a neropathy (and as your hands/arms are also affected) - "poly neuropathy"....

I've had most of the tests that have applied to these symtoms on the "lizajane" spreadsheets - tried IVIG - and finally have a diagosis of a genetic form of the disease... the important thing is now that your docs continue to do tests they can - if the cause can be found and treated in some way - you are way ahead of the game....

Hang in there - do you have appt to see neuro for more testing and discusss results??????:confused:

Still waiting
 

Thank you for the reply. Im still waiting for the appointment to be made. Hopefully I will hear something early next week.

OK...so I am assuming there is no demylination going on right? I assume if there was they would have put that in the interpitation.

Can I ask what if anything you have been diagnosed with?

Tests
 

Hi again,

I'm not sure from your tests - your doc I think would be able to tell.. I have total demylination in that the most of the nerve fibers with mylination on them just up and left town...... (I have no feeling on my skin on almost my whole body - just had an iv stick today and felt absolutely nothing).

The diagnosis I'm now getting is Hereditatry Sensory, Autonomic, and Motor Neropathy.. In the past they have suspected paraneoplastic (and still wont rule out completely) - and auto-immune PN's like Sjogrens - had a salivary gland biopsy - lots of blood work - and CIDP diagnosis even though the blood work and lumbar puncture didnt indicate it....

The autonomic portion affects my digestion (stomach doesnt work - "gastropareis") so live on fluids only and also my heart - but the heart problems are being controlled with meds at a satisfactory level for now..... just have to keep an eye on it....

Have you checked out the "stickies" at the top of the thread? Theres lots of great information and will help when you see the doc with questions, etc...

:)

Not necessarily.
Your Dx sounds exactly like mine, and the small non-myleinated nerves as well as the large myleinated ones area affected, except that mine is axonal which means the axons are being attacked as well.
Testing should be done (see lizajane.com for a list) to determine cause, but it may be that you will be idiopathic without a cause being found. Be prepared for that. The treatment(s) are still the same, primarily.

Nide44
 

I think Liza Jane's site is www.lizajane.org

I'll check it.

(yep, just checked it) That site is etched on my memory.
Billye

I almost feel as if I can't add much?
 

Other than some small reassurance that based on those test results SOMETHING IS WRONG. And, that it sounds as if your docs are moving on it. Albiet far too slowly for your tastes. That happens to all of us tho. I will say tho, once you get 'in the door'? You will be IN! My own nerve tests stated severely slowed to non-existent conductions and amplitudes. I've not had to have a skin biopsy as no one has suggested that, and refused outright the sural biopsy because the docs just seemed to eager to get it on their resumes [REALLY!] When all other test criteria had been met. I'd like to hold that one out as a very last resort when/if needed.
I think ages ago I posted something about 'interpreting' nerve studies, but it was all Greek to me other than the summary which, like yours, said: Not good.
DO keep in mind that you are very lucky in ways? Tho you mite not feel so.... in that it's been only a year plus and you are actually getting the plethora of testings you need! So many here and elsewhere have been shuttled around from doc to doc or been ignored while damage was being done-at least your docs are trying?! IN the meantime, pain is pain and usually constant, treatment is lame until a solid diagnosis and guess who suffers in the interim?
Be patient? Maybe the next time you call the neuro see if they can put you in a cancelled appt-that usually means you would have to go at the drop of a hat...but-
Hugs and hope and soon! :hug::hug:-s - j

Billye,
Sorry about the error between .com & .org
Yer right !.
My bad !!

Thank You
 

Thank you all for the replies.

I would not have had this test done hand I not demanded it from my GP. My neuro did not want to run anymore tests. Then about 2 weeks after I saw him my foot went numb and has been numb ever since. So I went to my GP and demanded that he send me for the nerve conduction study cause I knew that there was something terribly wrong and it was not just *silent migraines* which is what they have been pushing on me for the last year and a bit.

So at least I am validated. Now I just have to wait for the Neuro to set up an appointment to see me.

I have to ask.....has anyone on this board experienced what I call brain quakes? The best way I can describe the feeling is either it feels like those electric shock feelings you get here and there with the PN but it is inside my brain. Other times it just feels like my brain is shaking inside my skull and my vision gets wonky with them. I can have these on their own or they can come on with episodes of vertigo.

This is the symptom, with the other symptoms that made me think I was dealing with MS. Now these test results looks more like PN but I can't figure out how my head issues fit in with PN.

Thank you everyone! You have all been very helpful and supportive.

Hi. I read your other post too. First on the note of the waiting for the neuro apt. I would call everyday till you get in. I know when I was waiting to get into Cleveland Clinic my apt was scheduled for 2 months out and I called everyday and got in that week meaning 2 months early. Could you call this gp and ask him to explain the results? My first emg/nc was not showing much so I had to have it repeated plus an ssep. Have you had an mri? I would ask for one of the brain and spine if not. I know I had to beg for the mri of my ankle but I got one after my mom flipped at the doc. What ever it takes. Better safe then sorry. Lastly and I know this time of the testing and unknown can be hard and create anxiety and a wandering mind of every possibility but try to stay present in the day. Hang in there and I hope you get the apt asap.

Hi Daniella,

Thank you for the reply. Yes I had an MRI in May 2007 of the head and cspine w/o contrast. They noted 3 very small non specific white spots between the grey and white matter.

I'm giving the Neuro's ofc til lunch time tomorrow....then I'm going to start calling them.

Thanks again everyone.

I have sensori-motor neuropathy too (mine is anxonal) which is caused by my lupus. I have posted recently about it (titled something like Sensori-motor neuropathy spreading to hands) so I won't repeat it all here.

nice to meet someone else with sensorimotor problems

cheers

raglet

Did you get a hold of the neuro? So what did they say the white spots are? Hope you are getting some answers and apts

Hi Raglet, nice to meet you. I'll pop over to your thread in a bit.

Hi Daniella, I have left messages but they never return my call. I have this beautifully written letter to fax off to my GP...called the office to get the fax number and their voice mail says they are on vacation until july 28th. Well that's only a week from Monday. I figure I've waited 16 months what's another week.

oh and the Neuro thinks the white spots are "microangiopathic in nature".....I think that means...relating to the blood vessels.

This must be the month for doc vacations because today I needed one of mine and his out of town and same with another. Well I hope you will get some answers soon after that. Random ? is this neuro someone your gp works with or you heard good things about? I ask because I know the wait lists can be long and if this is just a random one maybe researching some others in your area in case. I sometimes make apts in case. It is easier to cancel a few days before then having to wait for so long.

This Neuro is a research/teaching neurologist at the hospital here. He specializes in movement disorders. He is doing research in ALS, Parkinsons and Alzhiemers. He used to be at the Boston's Womens clinic I think. I have no idea why my GP sent me to him. Maybe because when he first referred me I has having balance and gait issues...this was before the numbness set in.

I am in Canada so in order to get an appointment with any specialist you need a referral from you primary.

Daniella hope you are feeling ok...

I really feel for you guys out of the us or some with the insurances that always need gp refferals. Just adds an extra layer of waiting and stress. It sounds like though the neuro is good. Hopefully. As for me thanks life is sucking right now. Sorry for the not the nicest language. Pain,family,life,stress,unresolved health issues. Yesterday was the worst day in a long time like the icing on the cake so to speak of my year.
Hope you feel better

Daniella,

I hope you are feeling better???!!!

Can you specify when your "brain quakes" were happening.
Was it when you turned your head?
I am sure you looked up MS which is why you were thinking that you had it, as there is a sign "Lhermitte's sign", however, you can also get that in b-12 defeciency and other things.

Did they do an LP?

*I'm a frequent chatter at an MS chat, as I had no clue what was wrong with me in the initial stages of testing, and someone had suggested MS*

I hope the figure it out.

Hi diagnonsense,

I do not believe the brain quakes are a form or l'hermitte's sign. When I first started having them I thought maybe it was a form of seizure. But my EEG's are normal.

For the most part they seemed to have settled down. Head movement did not seem to set them off. I could be just sitting watch tv, not moving, and i would be struck with either spinning vertigo that lasted only a few seconds, the brain quake or a combination of both.

B12, other vit. and mineral, electrolites, kidney function, thyroid, sugar levels have all been normal.

No LP as yet. I am also a frequent chatter on some MS boards.

BTW nice to meet you.

Finally!
 

Finally! Will be seeing the Neuro Aug 21/08. They tried to schedule it for November! I said I didn't think I could wait that long and told the nurse what has been happening for the last month. So she bumped up the appointment.

Now, in order to get them to call me I had to go through patient relations and tell them what had been going on.

My GP is back from holidays on Monday. I was thinking about asking him to refer me to yet another Neurologist as I am not happy with the current Neuro and his ofc staff. What do you think....should I try to see if I can get in sooner with another Neuro and start all over?

That seems to be a general (but verry irritating) trend in all the neurologists that I have been scheuduled with.
*The long wait*

I think you can keep the current appt. but try to call another place and see if they can get you in any sooner.
If they can, then you can cancel your current one.
Are you unhappy when you are seen??

My neurologist was dumber than a box of rocks. (thank the lord he referred me to Mayo)

Severity?
 

On paper ....do you think these results look like a mild neuropathy? Never thought to ask my doctor.