axonal sensory neuropathy

Have you been tested for Charcot Marie Tooth?

Kelly

Well anything is possible. I believe CodyStanley (Liz) was dx’d with CMT a few years ago after years of dealing with CIDP.

There are variants of CIDP with more axonal damage. It probably wouldn’t hurt to spend some time on Google.

Kelly

I hope you are not waiting on our sun going red dwarf. That ain’t gonna happen:) 🙂

Whatever neuropathy you end up having, I hope you get to a diagnosis soon. I went through several years and a couple of different neuro’s and three hospitals before I got a confirmed diagnosis. It can be tough. It can also get to the point where it becomes, “I don’t know exactly.’

In my case there was little motor involvement in the beginning. It was mainly sensory, but all of my tests did show demyelination. There are so many variations of different neuropathies that present themselves in many different ways.

I wish the best for you, and hope you get something figured out,

Interesting…

My last emg showed demyelination (now confirmed in both legs and arms), that it was sensory primarily, and that it was NOT axonal.

As I’m new to all of this, I’m not sure what all that means, but I hope to find out more on 2/25 when I see yet another “new” neuro.

Elmo

[QUOTE=Elmo]Interesting…

My last emg showed demyelination (now confirmed in both legs and arms), that it was sensory primarily, and that it was NOT axonal.

As I’m new to all of this, I’m not sure what all that means, but I hope to find out more on 2/25 when I see yet another “new” neuro.

Elmo[/QUOTE]

I see everyone posting about their “new neuro” this seems to be such a problem with these guys…..I have never been through soooooo many docs in my life, and it sounds like I am not alone. What is the real issue here with the neuro’s? Not listening ot the patient’s complaints, symptoms, caring about the patient’s needs, ego trip, lack of exposure /experience with the disease?

[QUOTE=J.Dennison]I see everyone posting about their “new neuro” this seems to be such a problem with these guys…..I have never been through soooooo many docs in my life, and it sounds like I am not alone. What is the real issue here with the neuro’s? Not listening ot the patient’s complaints, symptoms, caring about the patient’s needs, ego trip, lack of exposure /experience with the disease?[/QUOTE]

P.S. Going for my 4th EMG test, and an MRI of my upper back on Wednesday and Lumbar puncture on Thursday….really feeling like a lab rat this week. 🙁

“But the global warming thing is a scam too”

Good to see you haven’t lost your sense of humor! 99% of the earth’s scientists MUST be wrong. Eek!

The problems I’ve seen with the 3 neuro’s I’ve seen so far are:
A) if you’ve done research on your own, while waiting the mandatory 3-4 months for an appt, you’re a hypochondriac with “second year med student syndrome”
B) if you’re not in a wheelchair, or arrived in an ambulance, your case is “minor”
C) THEY are the experts, not you, and you should just shut up and let them do their job. And quit cluttering up the exam room with all those old films and test results, wouldja? They’re not gonna look at ’em anyway!

As “Quick Draw McGraw” used to say…”I’ll do the “thin’in” around here, BabaLouie!”

But I’m not bitter… 🙂

Elmo

doctors have needlessly complicated medicine. they look at diagnositics as a flow chart starting from the damage left behind and what treatment is effective and that defines a disease. Now if they could just figure out what causes things hmm perhaps a genetic defect as old as human history causing envoronmental intolerence but what could that be hmmmm.

Ahhh, but WHERE are is the ice expanding? Not at the North or South poles, that’s for sure. IMO, this warming is a precursor to the coming “next ice age”. Geo records support that theory strongly. To what extent man is contributing is open to some discussion.

We could go round and round about GW; this isn’t the correct forum for that discussion, though.

Perhaps you’d like to debate this in PM’s? Probably shouldn’t clutter up this thread with those discussions.

Best of luck,

Elmo

You probably wouldn’t expect this after that last post of mine, but I think doctors are less the culprit than the insurance companies.
I’ve spoken with my GP about this in the past, and I think “most” doctors are so sick of fighting their own internal systems that it makes them lazy. They get as tired of fighting these battles as we do.
Insurance companies tell them what they can treat, what meds they can give, and to vary from this is time-consuming and maddening for them.
We need to allow doctors to practice medicine and keep business practices at bay if we want decent healthcare.
But, that’s just my opinion.

Elmo

[QUOTE=Elmo]Interesting…

My last emg showed demyelination (now confirmed in both legs and arms), that it was sensory primarily, and that it was NOT axonal.

As I’m new to all of this, I’m not sure what all that means, but I hope to find out more on 2/25 when I see yet another “new” neuro.

Elmo[/QUOTE]

Elmo, I think that’s good news. The myelin is the protective sheath around the central conductive axiom. Demyelination is where the myelin sheath is damaged. The myelin is repaired through natural processes, Axonal damage frequently is not repairable. I’m not sure how well your neuro will explain it to you as it is quite complex, but there are several good resources on the internet that explain the processes for the layperson.

Good luck to you,

Gary

tara74 posted that dr’s have complicated medicine.

I wish no battles, but our entire medical system does not benefit the patient first.

Too much of it revolves around money.

In no order:

It costs too much for the medical student to get his/her diploma. by the time they graduate their debt is so great many feel the need to specialize to pay off their financial obligations.

The fixed costs associated with “hanging out a shingle” are way too high. opening up an office now includes more than a nurse, you need computer(sss) many different insurance connections and programs and training(s) employees for insurance only, technicians, liability insurance for the building, malpractice insurance for yourself, etc, etc, etc.

If the Dr. then becomes associated with a “group” he/she is expected to “herd them through” like cattle. Getting a specified percentage of tests, referrals, expanded visits, etc, all in the name of returning profits to the owners of the “group”.
I think to some degree, a Dr could look at his/her day like “what do I have to make today” instead of who can I help today?

I am not so cynical to think that all Dr.s are bad, or that most of them are bad. But I would say that some of them, one day or another have had to think about how much they had to make monetarily on a given day instead of what a particular patient needed to get better.

Insurance companies do not care about your health. Check that. They want you healthier so that your premium is unused and their profit is greater. They wish to provide as little as possible for the lowest possible price they are obligated to. They are in a profit and loss business. They are not in the business of making friends. P&L. The Insurance companies put pressure on the Dr. by paying less.

So, here we are… Dr.s are struggling, GP’s are dwindling, insurance Co’s are paying less and less. The population is paying more and more, and getting less and less for what they pay. Our deductibles go up, up, up

It is a mess, mess, mess

[QUOTE]Elmo, I think that’s good news. The myelin is the protective sheath around the central conductive axiom. Demyelination is where the myelin sheath is damaged. The myelin is repaired through natural processes, Axonal damage frequently is not repairable. I’m not sure how well your neuro will explain it to you as it is quite complex, but there are several good resources on the internet that explain the processes for the layperson. [/QUOTE]

Gee, Gary…you make it sound so easy! :p

I understand that myelin can be repaired/can regrow/whatever the term is, but everything I read doesn’t make it sound quite as optimistic as your post. As I understand things, the first order of business is to determine (if possible) what’s causing the myelin destruction, and to interfere with that destruction. You can replace all the joists in your floors, but if you don’t get rid of the termites, you’re just going to spend your life replacing joists. Know what I mean?

But, I get your point. At least with myelin destruction there is hope of regaining at least some of what you’ve lost, whereas the picture for Axonal damage is not as rosy.

As myelin is 80% Lipids and 20% Proteins, the first thing that happened when I started having these problems was my wife throwing away my Lipitor! 😀 My wife, you see, is a Science Teacher, and has Master’s in Biology and Zoology. So, she helps make sure that I stick as close to the scientific method as possible while rambling down the internet path.

And, while my leg involvement is strictly sensory, and the neuro that did my EMG stated that the Axons weren’t involved, I don’t think that’s the case with my arms/wrists. I’ll have to get my test results back out, but I have increasing weakness in my left arm, increasing numbness, decreased “velocities”, prolonged f-waves, etc., etc., etc.

Saddest thing, in all seriousness, was this past weekend. Had to replace a bit of ceiling because of water damage in a lower level of my house. [B] I had to get help from my wife to lift a HALF SHEET of sheetrock, because I couldn’t lift it over my head.[/B] I used to load double sheet packs into trucks by the dozens!!! 😮 A half sheet of sheetrock only weighs 20 pounds! And I couldn’t lift it over my head without help!

The last few days haven’t been really chipper as the reality of all this has set in. And, all the while, the doctors keep telling me how my case is “minor”.

Not to me, it isn’t. 😡

Elmo,

There is a fair bit of speculation here, but I believe that it holds water. I hate to use the analogy ’cause of the sheetrock and the basement water stuff, you know….

Most of my damage, probably 95% of it was sensory at the beginning. It was 95% sensory for the first10 or 11 years. In the later years it has turned a bit more motor. When I had my first “real” EMG NCV tests done they showed demyelination and led to the further tests etc that finally led to diagnosis a year or so later. There was also axonal loss in the first test and every test thereafter. I don’t know if your tests showed axonal loss or not, but you CAN have axonal loss with only sensory involvement.

The neuro also suggested way back then that I would probably never get any recovery in those areas, and I have not.

My speculation is that over time demyelinated damage could become axonal damage which would then become permanent or “residual” damage. Many of the folks who have suffered from deeper sensory losses have expressed to me that those sensory losses have not returned, while their muscular losses have returned somewhat. I don’t know what the difference is between an axon which carries sensory signals and a neuromuscular axon, if there is one, but there does seem to be a difference in the long term recovery of them.

Elmo,

Just for encouragement; at my worst (August 2008), I couldn’t button my shirt, cut my own steak, or turn the key in the ignition of my car. But through Plasma Exchange and Physical therapy, I’m back to benching 200# and you’re correct, “it ain’t easy” to use the vernacular. I have not recovered 100% of the sensory or motor function I lost to CIDP and I may not ever recover 100%.

I say this not to say everyone will recover as I have, but hang in there … there’s hope.

Gary

I’m a great deal like Dick, except that my CIDP actually started in the autonomic nerves, then moved to the sensory, and then to the motor. The autonomic and sensory problems have never improved, but I have seen some improvement in the motor nerves — in 2008 I was in a wheelchair, but now I’m walking.

The problem with remyelination is that it’s often incomplete or erroneous. Myelin tends to regrow, but sometimes leaves holes or forms the famous ‘onion bulbs’ — it grows back in haphazard layers. And it also depends on which nerves remyelinate. If nerves close to the spine remain damaged, no matter how well the lower nerves regenerate you’re still going to have problems. An analogy is the wiring in your house. If the big wire coming into the house is damaged, it doesn’t matter how good the rest of your wiring is: things just aren’t going to work properly.

Keep fighting,

Deb
London

[QUOTE=J.Dennison]I see everyone posting about their “new neuro” this seems to be such a problem with these guys…..I have never been through soooooo many docs in my life, and it sounds like I am not alone. What is the real issue here with the neuro’s? Not listening ot the patient’s complaints, symptoms, caring about the patient’s needs, ego trip, lack of exposure /experience with the disease?[/QUOTE]

You nailed it on the head…. Not enough experience or exposure to this disease. Instead of admitting the lack of experience and helping you seek out a specialist, not just a neurologist but a neurologist that knows about CIDP, they continue to see you as their patient and confuse/frustrate/undermine the daylight out of us…!!!! 😡

[QUOTE=ukguytemp]
Hello

My 4th Nerve conduction test shows worsening axonal neuropathy but no demyelination.

Does anyone have this ? Is this def not CIDP ? The neurophysiologist says it doesnt look like CIDP cos there is no motor involvement.

Help please:)

john[/QUOTE]

My EMG/NCV tests showed mostly axonal damage rather than demyelination, although I had motor, sensory, and autonomic symptoms, leading to an uncertain diagnosis of ‘maybe CIDP’. Nor did I respond to my first IVIG trial, compounding the uncertainty. My neurologist then referred me to a specialist, and for a nerve biopsy, which showed demyelination. However, my condition continued to worsen over the next three months, even while getting IVIG, before it finally stabilized. There is so much variance in the presentation and course of CIDP, which is why it is so hard to diagnose and why many people really need to see a specialist rather than a general neurologist. I have read some of your other posts, John, so I have a sense of your frustration with the medical treatment you have received. There must be some neuromuscular specialists in the UK, and I exhort you to keep pushing until you can see somebody who can make sense of your condition.

Good luck,
Gary