It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 02-04-2010, 05:25 PM   #1
Senior Veteran
(male)
 
Join Date: Jan 2006
Location: Mexico City
Posts: 634
stargrave HB Userstargrave HB User
Back with a DX... Part II.

And it's pretty much the same... but I hope this information could help many people who, like me, are searching for answers everywhere.

As Nikki clearly stated, answering my brief Q/A, there's no substitute for a professional opinion(a doc's visit), and better so if you got the chance to have some studies done to you.

So here is what I've learned:

1. First DX:Toxin Induced Neuropathy, produced by Ethylene Oxide exposure.
Actual DX: Sequels from a Polyneuropathy of unknown cause.

DX evolved after I took an EMG test(more on this later).

Symptoms: Began with a tingling right forearm, with mild motor dysfunction(I felt it a little clumsy and weak). It continued to weird numbness, tingling, burning sensations, pins and needles, water in my toes, you name it.

Later on it moved to my left arm and leg, mostly from elbow to hand and from knee to foot in both sides of my body. THis is when I got my first neuro visit.

Then I felt pain, like pins and needles, and burning, and mild to heavy electric shock pain, along with skin and muscle hypersensitivity.

Motor function remained fluctuating between almost asymptotic, to some clumsiness and weakness, but never too serious

The neurologist gave me Lyrica, right at the first visit, because he could not saw any evident motor dysfunction on his examination, that could indicate anything else(ALS, MS, Guillaume Barre Syndrome, just to mention three common worries).

Since I'm a specialist in thinking about the worst case scenario, I came with an Internist friend of mine which added a serious case of Stress/Anxiety that made things worse.

2. Why the test? Even before I felt the symptoms I was under heavy stress, with little or none good sleeping hours. This worsened when the neuropathy struck, so I was completely overwhelmed by it all.

On top of this somedays I felt my hands clumsier, my legs weaker(like jelly legs), and felt fasciculations in many parts of my body. Next thing you knew I was filled with needles and electrodes on the EMG test table.(AND I HATE NEEDLES).

3. The results: The Dx was supported both by my original neurologist and a neurophysiologyst, which was the one that performed the EMG test.

Briefly the found nerve denervation both in hands and legs, but from some "previous" incident, there was not any current progressive denervation, and they call my symptoms "sequels".

I do remember that the neurophysiologist asked me "How long are you dealing with this?" Like if this all symptoms were residual. I told him: Two weeks top, I felt great before this.

THey found a reduced interference/recruitment pattern in my study.

A note from the net that could add more info on this:

Quote:
In ALS there is motor units loss, therefore, those patients have a reduced interference pattern or reduced recruitment. Whatever they do, they do not reach the full recruitment pattern. This is very much noticeable if there is significant motor units loss. As a matter of fact this is also true for other neuropathic conditions, for instance, peripheral neuropathy. So, reduced recruitment is not specific for ALS.
5. Treatment: Again for the symptoms: Lyrica, this should resolve in some weeks.

Lessons learned:

- You NEED to go to one or two specialist for the best possible answers to your health problems.

- You NEED to get some studies, not ALL, specially the ones that are prescribed for you by your physician.

Why? YOu can do MRI, Blood, EMG, CAT, you name it, but if it's not something close to your problem, chances are that you spend lots of money for nothing, or even worse, that you find something else, not related to your symptoms, to worry about.

- Still a lot of things will remain n the blue, like in every other aspect in life. I don't know what caused this, I'd love to know it so I can actively avoid it. In the meantime, I stay away from solvents, but who knows?

- If someone knows a new way to prevent this horrible stuff, let us know.

- The EMG was a torture to me, both because of my fear of needles, and because of how expensive it was for me, I'm kind of broke. But the little peace of mind that it gave me, was worth every penny.

- I'm not completely out of my ugly thinking, and that's something I have to treat with another specialist, but at least I believe that I took a little step in the right way, to overcome this ugly condition, both physically and mentally.

Hope this helps someone.

Hope this

Last edited by stargrave; 02-04-2010 at 05:43 PM.

 
Sponsors Lightbulb
   
Old 02-04-2010, 06:03 PM   #2
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,693
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Back with a DX... Part II.

Wishing you the best Stargrave. Since its not MS, you dont have to worry about injecting yourself...thats the good news.

The term nuropathy means nothing more then any disease which affects the nerve. Polyneuropathy means that it affects more then one nerve simultaneously. Its a symtom and a medical term used to describe the symptom. You dont cure Polyneuropathy, you treat the symtom. Carpal Tunnel causes Polyneuropathy, so does Fibromyalgia. And guess what the number one reason for excaberations is? Stress, followed by anxiety.

Take your friends advice and deal with that first...and I am betting you will feel a whole lot better!

The lesson you learned-- I truly believe you are looking at it all wrong. Its absolutely important to have every single test that you had done....without them, they can NOT determine what is causing your problems, can NOT rule out things like Multiple Sclerosis or ALS or even Lupus...you claim if you DONT get answers - youve wasted a lot of money...in actuality, there is no possible way for any of us to have been diagnosed with MS without having gone thru those tests...so look at the bright side! You are NOT one of us. YOU do NOT have a life threatening illness or even chronic condition. But you do have an issue. One which is manageable and even controllable. I pray for you that the Lyrica helps. Since your pain is not being caused by a lesion or black hole in your brain, chances are it will work for you. Again, you turned out to be lucky...and again, without having had those tests, you wouldnt know just how lucky you are.

Wishing you NOTHING but the VERY best....I hope you find relief soon.
Nikki
__________________
RRMS- dx 05

Last edited by MSNik; 02-04-2010 at 06:06 PM.

 
Old 02-05-2010, 09:34 AM   #3
Senior Veteran
(male)
 
Join Date: Jan 2006
Location: Mexico City
Posts: 634
stargrave HB Userstargrave HB User
Re: Back with a DX... Part II.

Thanks again Nikki.

This has been a real ordeal to me. And I do feel blessed for the support, and words of courage both from people like you, and from my doctors.

Right there with the pins and needles all over my body I felt awful, both for my needle fear, and because I felt terribly Ill.

What I meant in not giving "Blind man steps", as we call them here, is that, it's all right to follow and to get every single test there is, in order to find out what each person's problem could be.

What I'm trying to say is that, we need the professional advice to really know what is happening to us, before jumping into conclusions.

For example I read: "chronic condition" in my report, and I thought of it as "Long lasting, forever stuff", and when the doc read it it said that, it appears that the real onset of my problem happened months ago!

I was as surprised as him, because I can't recall any symptom barely resembling anything of what I'm experiencing since mid-January.

Finally I have to say that I'm not out of the hole yet, the encouraging EMG, test, and the confirmation of my initial DX are the first great steps, but I still feel quite bad from time to time.

I even had a painful EMG "hangover" filled with pain all over, that(one more example), when you read the info on the net it says "not common", and when I checked with my doctor, he said "common", relax, wait some days for the aches to recede.

Nevertheless, and here is my advice again, going with the doctors, enduring the EMG, it all gave me strength, hope, and the will to keep on going towards recovery, both from this Polyneuropathy stuff, and from my anxiety/stress issues.

I made myself a promise that, If I can get my act together, and have a decent amount of money in the future, or at least some money , I'll donate what I can for ALS/MS research.

I don't know if it will be too much, maybe just a few bucks, but I really really, want to help, in whatever way I can, to find a cure for this conditions, that can came out of the blue, and strike people from all ages, countries and religions.

Best wishes and the best health for you all.

Last edited by stargrave; 02-05-2010 at 09:36 AM.

 
Old 02-05-2010, 09:43 AM   #4
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,693
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Back with a DX... Part II.

Dear Stargrave. Just one more piece of advice for you...you wrote "when you read the info on the net" .....half of the problems in this world are because of info on the net. A. its not regulated. B. its not updated and is usually outdated. and even more importantly, you have absolutely NO IDEA who is publishing this stuff.

Using sites like this one, is a good idea. Asking people who actually have a disease or condition what their experiences are, is always a good idea. No one can understand better then the ones who have experienced it. However, searching symtoms and allowing yourself to read things posted by anyone and everyone - not knowing if its a "paid" advertisement by a pharmaceutical company or worse yet, a manufacturer of a miracle cure- you just dont know what you are getting yourself into.

You are living proof that the more you read, the more anxious and overwhelmed you become. By NOT reading it, you wont allow yourself to think of the worst case scenario....try, really try, to curb what you read to a minimum or at least stick to medical journals. Anyone can put up a website with medical infomration, if you cant reference who wrote it, when it was published and how the study was done or information gathered, you dont want to be reading it!!

I wish you peace, Stargrave.
Nikki
__________________
RRMS- dx 05

 
Old 02-05-2010, 10:58 AM   #5
Senior Veteran
(male)
 
Join Date: Jan 2006
Location: Mexico City
Posts: 634
stargrave HB Userstargrave HB User
Re: Back with a DX... Part II.

Quote:
Originally Posted by MSNik View Post
Dear Stargrave. Just one more piece of advice for you...you wrote "when you read the info on the net" .....half of the problems in this world are because of info on the net. A. its not regulated. B. its not updated and is usually outdated. and even more importantly, you have absolutely NO IDEA who is publishing this stuff.

Using sites like this one, is a good idea. Asking people who actually have a disease or condition what their experiences are, is always a good idea. No one can understand better then the ones who have experienced it. However, searching symtoms and allowing yourself to read things posted by anyone and everyone - not knowing if its a "paid" advertisement by a pharmaceutical company or worse yet, a manufacturer of a miracle cure- you just dont know what you are getting yourself into.

You are living proof that the more you read, the more anxious and overwhelmed you become. By NOT reading it, you wont allow yourself to think of the worst case scenario....try, really try, to curb what you read to a minimum or at least stick to medical journals. Anyone can put up a website with medical infomration, if you cant reference who wrote it, when it was published and how the study was done or information gathered, you dont want to be reading it!!

I wish you peace, Stargrave.
Nikki
Plain Truth.

Promise I'll try to avoid net readings, as must as I can.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Really getting worried, major back pain sammyo1 Spinal Cord Disorders 8 10-23-2008 05:07 AM
Lower Back, Lumps or ridges... spartacus77 Back Problems 3 12-12-2007 05:17 AM
PVNS Knee Surgery & Hip/Back Problems @ 22 - Pls Help! JennyT85 Knee & Hip Problems 1 11-19-2007 07:58 PM
Well I blew it!!!Now Im back harmony8299 Addiction & Recovery 21 07-31-2007 02:07 AM
Damaged my tumbnail and root - will my nail ever grow back? ACfly Nail Problems 7 07-29-2007 11:00 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (986), MSNik (520), Snoopy61 (58), Whimpurr (13), J-one (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Gullyabb (8)

Site Wide Totals

teteri66 (1162), MSJayhawk (991), Apollo123 (890), Titchou (826), janewhite1 (823), Gabriel (757), ladybud (737), sammy64 (666), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 05:39 AM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!