Re: MRI results- help please

[Guest guest]

YAY! I'm so happy you don't have MS! As I said before, I was falling (legs just

suddenly giving way and going out from under me), progressive muscle weakness,

strange motor movements, tics, major memory loss, word searching, increased

bowel and bladder issues (requiring cathing and bowel program), dropping things,

at the end it progressed to a sudden onset of hypertension with left sided

weakness, inability to write (I had to think of each letter and write it like a

first grader), extremely slurred speech (think of the drunkest person you have

ever heard and triple that), and I could probably list ten more. I was tested

for MS & stroke. It was ALL medicine related. I have no doubts that Neurontin

can be causing your symptoms. I was on Neurontin, Zanaflex and a low dose of

Wellbutrin. I was not even on a narcotic. You are on an incredible amount of

narcotics as well. I am definately not the one to suggest other things to take

as I dont take anything

except supplements. I tried numerous meds and my body did not tolerate any of

them. I decided I would rather have high levels of pain than be in a nursing

home gorked out. There are many here that are successfully taking meds though so

I'm sure you will get lots of suggestions. I hope you find something that helps!

So happy for your results!   

Subject: MRI results- help please

To: tetheredspinalcord

Date: Tuesday, March 8, 2011, 10:31 PM

 

I got my MRI results this afternoon and they are normal, pristine brain!

I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

I know some of you spoke to the side effects you have had with these types of

drugs.

I want to switch to something else- any ideas? I have pretty severe leg pain and

hypersensitive feet. Any suggestions on side effects you have experienced? Any

thoughts on inflammation of cord?

As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

[Guest guest]

This all sounds like it could b Neurontin related. The anti-epileptics

change the electrical activity in the brain (slows -hence seizure

prevention).

There are lots of other meds used for neuropathy.

Sent from my iPhone

I got my MRI results this afternoon and they are normal, pristine brain!

I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

I know some of you spoke to the side effects you have had with these types

of drugs.

I want to switch to something else- any ideas? I have pretty severe leg pain

and hypersensitive feet. Any suggestions on side effects you have

experienced? Any thoughts on inflammation of cord?

As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

[Guest guest]

Thank you!

It sounds what we have in common is Neurontin. I took Welbutrin alone once and

no issues.

I don't think morphine is causing it since I took it for a year (prior to this)

an no issues, no issues on any other narcotics either. I did look online and

Neurontin has pretty bad side effects.

I also dropped stuff last week!

Thank you for sharing your story again, and I'm so happy you are doing well.

Unfortunately with working full time and traveling there is no way I can get off

the meds, my pain level is a 7-8 without meds legs and feet are on same

scale.

>YAY! I'm so happy you don't have MS! As I said before, I was falling (legs just

suddenly giving way and going out from under me), progressive muscle weakness,

strange motor movements, tics, major memory loss, word searching, increased

bowel and bladder issues (requiring cathing and bowel program), dropping things,

at the end it progressed to a sudden onset of hypertension with left sided

weakness, inability to write (I had to think of each letter and write it like a

first grader), extremely slurred speech (think of the drunkest person you have

ever heard and triple that), and I could probably list ten more. I was tested

for MS & stroke. It was ALL medicine related. I have no doubts that Neurontin

can be causing your symptoms. I was on Neurontin, Zanaflex and a low dose of

Wellbutrin. I was not even on a narcotic. You are on an incredible amount of

narcotics as well. I am definately not the one to suggest other things to take

as I dont take anything

> except supplements. I tried numerous meds and my body did not tolerate any of

them. I decided I would rather have high levels of pain than be in a nursing

home gorked out. There are many here that are successfully taking meds though so

I'm sure you will get lots of suggestions. I hope you find something that helps!

So happy for your results!   

>

>

>

>

>

>Subject: MRI results- help please

>To: tetheredspinalcord

>Date: Tuesday, March 8, 2011, 10:31 PM

>

>

> 

>

>

>

>I got my MRI results this afternoon and they are normal, pristine brain!

>

>I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

>

>I know some of you spoke to the side effects you have had with these types of

drugs.

>

>I want to switch to something else- any ideas? I have pretty severe leg pain

and hypersensitive feet. Any suggestions on side effects you have experienced?

Any thoughts on inflammation of cord?

>

>As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

What type of leg pain, any back pain too? I think you said you had the same pain

pre op, do they say if this pain is normal to have after surgery, I mean

consistent with TC? I wonder if it is possible to have some low level infection

from opening up the dura and if antibiotics or steroids would help if

inflammation. Hope you get relief soon. So glad you don't have MS.

> >

> >

> >

> >Subject: MRI results- help please

> >To: tetheredspinalcord

> >Date: Tuesday, March 8, 2011, 10:31 PM

> >

> >

> > 

> >

> >

> >

> >I got my MRI results this afternoon and they are normal, pristine brain!

> >

> >I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

> >

> >I know some of you spoke to the side effects you have had with these types of

drugs.

> >

> >I want to switch to something else- any ideas? I have pretty severe leg pain

and hypersensitive feet. Any suggestions on side effects you have experienced?

Any thoughts on inflammation of cord?

> >

> >As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi ,

Thanks!

Well I have the back pain, but that's controlled.

Been getting horrible all over muscle knots and pain, I feel like I am bruised

everywhere.

My massage therapist is stumped, I have so many knots he barely touches my

legs/calves/feet and I scream. My hips are even worse.

I do take magnesium

Then I have the whole electrical pain down my legs and arms now, also traveling

to feet, which are hypersensitive. I sleep with my feet off the bed, with covers

off, can't have anything touch them.

I am cutting Neurontin to 300mg x 3 a day, and the steroid on the 21st along

with more testing if needed.

Honestly the knots are the worst.

>What type of leg pain, any back pain too? I think you said you had the same

pain pre op, do they say if this pain is normal to have after surgery, I mean

consistent with TC? I wonder if it is possible to have some low level infection

from opening up the dura and if antibiotics or steroids would help if

inflammation. Hope you get relief soon. So glad you don't have MS.

>

>

>

>> >

>> >

>> >

>> >Subject: MRI results- help please

>> >To: tetheredspinalcord

>> >Date: Tuesday, March 8, 2011, 10:31 PM

>> >

>> >

>> > 

>> >

>> >

>> >

>> >I got my MRI results this afternoon and they are normal, pristine brain!

>> >

>> >I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

>> >

>> >I know some of you spoke to the side effects you have had with these types

of drugs.

>> >

>> >I want to switch to something else- any ideas? I have pretty severe leg pain

and hypersensitive feet. Any suggestions on side effects you have experienced?

Any thoughts on inflammation of cord?

>> >

>> >As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

How much and what type of magnesium do you take ? Do you only take PO

magnesium or do you also do mag sulphate soaks? Do you take calcium, if so how

much and what type (as in carbonate, citrate etc..not brand) I think I asked

already but have you been tested for fibromyalgia?   

>What type of leg pain, any back pain too? I think you said you had the same

pain pre op, do they say if this pain is normal to have after surgery, I mean

consistent with TC? I wonder if it is possible to have some low level infection

from opening up the dura and if antibiotics or steroids would help if

inflammation. Hope you get relief soon. So glad you don't have MS.

>

>

>

>> >

>> >

>> >

>> >Subject: MRI results- help please

>> >To: tetheredspinalcord

>> >Date: Tuesday, March 8, 2011, 10:31 PM

>> >

>> >

>> > 

>> >

>> >

>> >

>> >I got my MRI results this afternoon and they are normal, pristine brain!

>> >

>> >I am planning on isolating what may be causing this. They are thinking

inflammation of spinal cord or Neurontin side effects.

>> >

>> >I know some of you spoke to the side effects you have had with these types

of drugs.

>> >

>> >I want to switch to something else- any ideas? I have pretty severe leg pain

and hypersensitive feet. Any suggestions on side effects you have experienced?

Any thoughts on inflammation of cord?

>> >

>> >As always thanks a million! I am relieved this is not MS but very concerned:

numbness, tingling, eye pain, face tickling, noise intolerance, trouble

recognizing numbers etc

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

,

Still no idea what the knots could be, but the pain you describe in your

legs sounds like neuropathy. That is what the neurontin should control. If

your leg pain is that bad, cutting the neurontin will probably make worse.

IMO, it sounds like you need to find a different med to treat your

neuropathy. Treating neuropathy is tricky. There are so many meds out

there. Unfortunately, they generally have lousy side effect profiles.

Also, most of them have to be started at a low dose and gradually increased

until the therapeutic level is reached, which can take about 2 weeks. So,

after spending 2 weeks in pain only to figure out that the med doesn't work

or the side effects are not tolerable, then you have to spend another 1-2

weeks tapering the dose down before you can try another one. Neurontin is

one of the most common Rx used for neurontin. It has a good track record of

working.

Neurontin was the first med I was prescribed. I slept 20+ hours a day.

That is no quality of life. I have tried every med out there and only one

(Cymbalta) kinda worked. It helped, but I just can't afford it.

Ultimately, I had to just stop taking a med for my neuropathy and learn to

deal with it. If I could find one that would work and I could afford, I

would finally be able to continue tapering my narcotics down even further.

Frustrating position to be in.

There are many anti-epileptic Rxs that are used, including: Depakote

(valproic acid), Tegretol (carbamepazine), Keppra, Topamax (topiriamate),

Gabapentin, and I'm sure there are some I'm missing.

Tri-cyclic anti-depressants are also used. They have a good track record of

controlling pain, but they also have lousy side effect profiles. But if you

can take them, they should work well. Another benefit is that they are

CHEAP. Some commonly used ones are imiprimine, amitriptyline (brand names

Elavil, Endep and others) and nortriptyline (brand names Pamelor and

Aventyl). I would say that imiprimine and amitriptyline are probably the

most commonly prescribed for neuropathy.

I wish I had a simpler answer, but unfortunately it is just a matter of

doing the long process of trial and error.

Jenn

>

>

> Hi ,

> Thanks!

>

> Well I have the back pain, but that's controlled.

> Been getting horrible all over muscle knots and pain, I feel like I am

> bruised everywhere.

> My massage therapist is stumped, I have so many knots he barely touches my

> legs/calves/feet and I scream. My hips are even worse.

> I do take magnesium

>

> Then I have the whole electrical pain down my legs and arms now, also

> traveling to feet, which are hypersensitive. I sleep with my feet off the

> bed, with covers off, can't have anything touch them.

>

> I am cutting Neurontin to 300mg x 3 a day, and the steroid on the 21st

> along with more testing if needed.

>

> Honestly the knots are the worst.

>

>

[Guest guest]

,

Quite frequently it increases. Manipulation of the nerves and cord during

surgery tend to irritate them and causes and increase in neuropathic pain.

Especially if it is the first untethering, when the cord is released,

sometimes it will spring up to some degree. Particularly the case in people

Dx as an adult, the body has kind of gotten used to the position of the cord

and accommodated it for your life up to that point. So, releasing it and

changing its position can often increase pain. That is why if you were Dx

as an adult and pain is the only symptom (no neuro decline, or at least no

neuro decline that hasn't been present since childhood and isn't changing),

and it can be managed medically, then surgery may not be the best option.

Sometimes the increase in neuropathic pain post-op is temporary (1 year

duration after surgery or less as the nerves heal and become adjusted to

their new home) and sometimes it is permanent.

That is why some of the general guidelines about surgery (particularly in an

adult) are that if the only symptom is pain and it can b managed medically,

surgery isn't always the best option. The point of surgery is generally to

stop neurological deterioration. Any functional restoration is just a

bonus. Pain relief from surgery is a hard one - especially in adults. I

know there are those who had surgery as an adult and their only symptom was

pain and the surgery alleviated it and they are so thankful they did it.

Pain was my only symptom for my first two surgeries. I wish I had the info

from this group before hand and a second opinion. I probably wouldn't have

done it. But that's done now. I made the decision with the best info I had

at the time. Pain control with surgery is just a tricky one.

Unfortunately, there just isn't any way to know ahead of time. I'm still

trying to find that crystal ball that can give me the answers before I do

surgery

Jenn

>

>

> Jenn,

>

> Why would a neuropathy increase after surgery for TC, shouldn't symptoms

> decrease?

>

>

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