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Home > Archive > Neurological Disorders > October 2006 > So Horrible
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| Well, I listened to who I wanted to listen too and I had neuroma surgery
on both feet. The reality is.....it didn't work. My feet still hurt, and
I'm sure I have PN...just like the neurologist said. It sucks to have
your feet hurt all the time. I not only have numb feet, I also have
burning feet. I have lost the will to live.
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| JJ ~
I really understand the feeling of having lost the will to live. As the
old saying goes: Been there, done that, got the T-shirt.
A few weeks ago I really fell into dispair. I have been waiting for the
'medical profession' to stop practicing medicine and get it right since
late April/early May. And now, here in the middle of October, although
I now have a 'tentative' diagnosis, I still do not have confirmation as
to why I *forgot* how to walk ~ thus no treatment.
I can feel my bones. My flesh hangs from my body. I cannot walk from my
bedroom to the living room without holding onto the wall ~ but I am not
complaining about that, because it is an improvement!
Two weeks ago my neurologist (#3) said that he thinks I have Myasthenia
Gravis, and he prescribed a medication called Mestinon. Like you, I
just wanted an answer and some relief! I had listened to all the other
doctors (I now have 18 that I see!) and this is the first time someone
said that he felt confident enough about his 'guess' that he was
willing to try this medicine.
But, while waiting for that appointment two weeks ago, I became
convinced that I was dying, and that my father (who I live with) would
find my body some morning. I had decided to write my will and put it
under my pillow .... thinking that he would only find it if I did die.
After three days, and a trip to see my PCP, I was reassured that I was
not dying but that the problem was anxiety due to having spent the last
six months waiting for an answer! And, I do agree ...but the fact
remains that I can no longer sit without my bones jabbing me ... I
cannot lift much of anything ... I cannot stand without support for
more than a few minutes .... the list goes on and on. And, like you
stated, the will to live becomes very tenuous at these times.
Somehow I was able to grit my teeth and move forward. And, although
nothing has improved noticiably, I am calmer now about life ... even
after a well meaning friend from work called to tell me that they had
hired a replacement for me. Really makes the 'I'm not going back' very
real ~ and painful.
JJ ~ if you read this far, I hope you found a nugget of wisdom that
might help. No one knows what you are going through ... and I really
hope that you have some people in your life who can help. I will be
thinking of you ~ and hope that you write again to let us know how you
are doing.
Susan aka Zuska
JJ wrote:
> Well, I listened to who I wanted to listen too and I had neuroma surgery
> on both feet. The reality is.....it didn't work. My feet still hurt, and
> I'm sure I have PN...just like the neurologist said. It sucks to have
> your feet hurt all the time. I not only have numb feet, I also have
> burning feet. I have lost the will to live.
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| x-no-archive: yes
JJ wrote:
> Well, I listened to who I wanted to listen too and I had neuroma surgery
> on both feet. The reality is.....it didn't work. My feet still hurt, and
> I'm sure I have PN...just like the neurologist said. It sucks to have
> your feet hurt all the time. I not only have numb feet, I also have
> burning feet. I have lost the will to live.
If your pain is peripheral neuropathy, it may be reversible as mine was.
Mine went mostly away with a low carb diet. The residual numbness went
away when I added 600 mg per day of time released alpha lipoic acid.
1200mg per day got rid of PNs that came back when off my diet within a
week of returning to very low carb. No pain, no burning, no numbness.
Susan
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
>
> If your pain is peripheral neuropathy, it may be reversible as mine was.
>
> Mine went mostly away with a low carb diet. The residual numbness went
> away when I added 600 mg per day of time released alpha lipoic acid.
>
> 1200mg per day got rid of PNs that came back when off my diet within a
> week of returning to very low carb. No pain, no burning, no numbness.
>
> Susan
You are very fortunate to have found a cure for your "illness". I have
had conflicting opinions about my "illness". I had a skin biopsy that
was negative for PN....an EMG that was negative for PN. No ankle
reflex...but as my podiatrist said...that reflex is meaningless as we
get older. The sharp burning pain do go away after the surgery, but the
numbness is horrible. And, any exercise of significance exacerbates the
pain. I have to take tramadol for pain and I take Ativan to sleep. This
all started one day when my right foot felt like I was walking on a
rock. I had to scrunch my toes for the pain to go away. Then, it entered
my left foot. I feel like I'm possessed with demons! I'm also anemic,
but I have tons of energy and I have no scheduled a bone marrow biopsy
to rule out any blood disorders. This is so crappy.
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| mmlevy46@hotmail.com 2006-10-14, 4:28 pm |
|
JJ wrote:[vbcol=seagreen]
are you taking any other medication??? taking any anti cholesterol
drugs?
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| x-no-archive: yes
JJ wrote:
> You are very fortunate to have found a cure for your "illness".
Thankws. It wasn't luck, though, nor was it a cure. I have to
diligently stick to my diet strictly to maintain the improvements.
I have
> had conflicting opinions about my "illness". I had a skin biopsy that
> was negative for PN....an EMG that was negative for PN. No ankle
> reflex...but as my podiatrist said...that reflex is meaningless as we
> get older. The sharp burning pain do go away after the surgery, but the
> numbness is horrible. And, any exercise of significance exacerbates the
> pain. I have to take tramadol for pain and I take Ativan to sleep. This
> all started one day when my right foot felt like I was walking on a
> rock. I had to scrunch my toes for the pain to go away. Then, it entered
> my left foot. I feel like I'm possessed with demons! I'm also anemic,
> but I have tons of energy and I have no scheduled a bone marrow biopsy
> to rule out any blood disorders. This is so crappy.
Have you had your post meal (1 hour and two hour) blood glucose tested?
Anything over 140 produces pain and senssations of PN in my feet.
Susan
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| mmlevy46@hotmail.com wrote:
> JJ wrote:
>
> are you taking any other medication??? taking any anti cholesterol
> drugs?
>
I take an anti cholesterol drug...but it isn't any of the statins. It's
called gemfibrozil. It works harder on the triglycerides. I used to have
a triglyceride count of over 400...now it is 85 and my total cholesterol
is 181. I also quit drinking 3 months ago. I also lost 30 lbs after
doing the South Beach Diet for six months. I have normal blood pressure
and the heart of a 20 year old. Oh well. I can still walk and I can feel
my feet. Sometimes the medical profession just can't figure it out.
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
>
>
> Thankws. It wasn't luck, though, nor was it a cure. I have to
> diligently stick to my diet strictly to maintain the improvements.
>
> I have
>
> Have you had your post meal (1 hour and two hour) blood glucose tested?
> Anything over 140 produces pain and senssations of PN in my feet.
>
> Susan
I had the 24 hour fast three months ago and it was 126. Not good, but
not diabetes. I just had it done and it is down to 102. Still not great,
but I'm hoping with zero alcohol and lost weight it will even get
better. My bigger problem is my low white and red count. I'm not feeling
anemic, I had a colonoscopy and that was normal. Now, I'm going to get a
bone marrow biopsy. Not something I want to do, but I have to do
everything I can to determine some of this crap.
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| x-no-archive: yes
JJ wrote:
> I had the 24 hour fast three months ago and it was 126. Not good, but
> not diabetes.
That certainly *is* diabetes! By the time fasting is that high, post
meal numbers have usually been very high for years. I've been diabetic
for years, used to have severe PNs, and I have never had fasting above
109, even during the time I had PNs.
I just had it done and it is down to 102. Still not great,
> but I'm hoping with zero alcohol and lost weight it will even get
> better. My bigger problem is my low white and red count. I'm not feeling
> anemic, I had a colonoscopy and that was normal. Now, I'm going to get a
> bone marrow biopsy. Not something I want to do, but I have to do
> everything I can to determine some of this crap.
You certainly need to follow those labs up, but I urge you to consider
that you *are* diabetic, and get a library or book store copy of
Gretchen Becker's, "The First Year, Type 2 Diabetes. It's an excellent
first book.
When I cut starch and sugar out of my diet, my body pains went away
overnight, and my PN pain disappeared. The remaining residual numbness
is what it took alpha lipoic acid to get rid of.
Susan
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
>
>
> That certainly *is* diabetes! By the time fasting is that high, post
> meal numbers have usually been very high for years. I've been diabetic
> for years, used to have severe PNs, and I have never had fasting above
> 109, even during the time I had PNs.
>
> I just had it done and it is down to 102. Still not great,
>
> You certainly need to follow those labs up, but I urge you to consider
> that you *are* diabetic, and get a library or book store copy of
> Gretchen Becker's, "The First Year, Type 2 Diabetes. It's an excellent
> first book.
>
> When I cut starch and sugar out of my diet, my body pains went away
> overnight, and my PN pain disappeared. The remaining residual numbness
> is what it took alpha lipoic acid to get rid of.
>
> Susan
>
Well...I appreciate your advice, but I have been on the South Beach Diet
for over six months and it didn't really have any effect on my numbness.
Also, my GP and my neurologist, both said that I didn't have diabetes. I
didn't have any of the symptoms of diabetes. And...not that it matters,
but it was 124, reduced to 102 and I hope to continue to lower it. And
if you read all the reports on testing, this is normally what they say;
Table 1. Fasting Plasma Glucose Test
> Plasma Glucose Result (mg/dL)
> 99 and below Normal
> 100 to 125 Pre-diabetes
> (impaired fasting glucose)
> 126 and above Diabetes*
>
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| x-no-archive: yes
JJ wrote:
have been on the South Beach Diet
> for over six months and it didn't really have any effect on my numbness.
It's too high in starch carbs to reverse neuropathies. Adding time
released alpha lipoic acid, 600 mg. to 1200mg per day will reverse
them, along with a lower starch diet.
> Also, my GP and my neurologist, both said that I didn't have diabetes.
I
> didn't have any of the symptoms of diabetes.
Right. All you have is high blood sugar and peripheral neuropathies.
My mistake. What was I thinking? And why are you posting on the
diabetes newsgroup?
And...not that it matters,[vbcol=seagreen]
> but it was 124, reduced to 102 and I hope to continue to lower it. And
> if you read all the reports on testing, this is normally what they say;
>
> Table 1. Fasting Plasma Glucose Test
>
>
>
>
>
>
>
>
Why don't you read the reports on this very well researched web site:
www.phlaunt.com/diabetes? They show that beta cell damage occurs at
fasting above 100, and cellular damage at any reading over 140. My docs
didn't diagnose my diabetes either, til I bought a glucose meter and
showed them the numbers after meals.
If you won't make this minimal effort to help yourself, then there's no
reason for me to try, either.
Susan
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
> have been on the South Beach Diet
>
> It's too high in starch carbs to reverse neuropathies. Adding time
> released alpha lipoic acid, 600 mg. to 1200mg per day will reverse
> them, along with a lower starch diet.
>
> I
>
> Right. All you have is high blood sugar and peripheral neuropathies. My
> mistake. What was I thinking? And why are you posting on the diabetes
> newsgroup?
>
>
> And...not that it matters,
>
> Why don't you read the reports on this very well researched web site:
> www.phlaunt.com/diabetes? They show that beta cell damage occurs at
> fasting above 100, and cellular damage at any reading over 140. My docs
> didn't diagnose my diabetes either, til I bought a glucose meter and
> showed them the numbers after meals.
>
> If you won't make this minimal effort to help yourself, then there's no
> reason for me to try, either.
>
> Susan
I am doing all I can to help myself. I am on the South Beach Diet, which
is the closest thing to a Diabetic Diet. I don't drink and I exercise
almost daily (although it is hard to walk sometimes with my feet being
so painful). Aside from that, I have been on neurontin to treat PN and I
haven't noticed any difference in my pain. I also was on Cymbalta, and
that gave me no relieft and it had numerous side-effects.
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| x-no-archive: yes
JJ wrote:
> I am doing all I can to help myself. I am on the South Beach Diet, which
> is the closest thing to a Diabetic Diet.
No, it is not. The closest thing to the best diabetic diet for *you* is
arrived at by using a glucose meter one and two hours after meals, and
reducing or eliminating foods that raise your bg above 140. These
differ for everyone, there is no one size fits all plan.
> I don't drink and I exercise
> almost daily (although it is hard to walk sometimes with my feet being
> so painful).
A small amount of red wine with meals keeps blood glucose lower.
Exercise is very important, especially within an hour after you eat.
Aside from that, I have been on neurontin to treat PN and I
> haven't noticed any difference in my pain. I also was on Cymbalta, and
> that gave me no relieft and it had numerous side-effects.
You won't get significant relief until your blood glucose is under tight
control. You do that by using a meter and adjusting your diet, and
taking time released alpha lipoic acid.
That's all I have to say. The rest is up to you.
Susan
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| Susan wrote:
> x-no-archive: yes
>
> JJ wrote:
>
>
> No, it is not. The closest thing to the best diabetic diet for *you* is
> arrived at by using a glucose meter one and two hours after meals, and
> reducing or eliminating foods that raise your bg above 140. These
> differ for everyone, there is no one size fits all plan.
>
>
> A small amount of red wine with meals keeps blood glucose lower.
> Exercise is very important, especially within an hour after you eat.
>
> Aside from that, I have been on neurontin to treat PN and I
>
> You won't get significant relief until your blood glucose is under tight
> control. You do that by using a meter and adjusting your diet, and
> taking time released alpha lipoic acid.
>
> That's all I have to say. The rest is up to you.
>
> Susan
Why are you so angry? I thought reader forums were to help each
other...not in lieu of a doctor. My GP and my neurologist don't think I
have diabetes. I don't have any of the symptoms....frequent
urination...blurred vision....none of the so-called symptoms. I may just
in fact have PN....I'm going to talk to my GP about a 2 hour test and
ask him about a glucose meter, but....I think you should try to be a
little more "easy going on people suffering from an "illness" that has
not been diagonosed by the medical community. Remember, they practice
medicine, and we are the guinea pigs.
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| x-no-archive: yes
JJ wrote:
> Why are you so angry?
I'm not angry in the least.
> I thought reader forums were to help each > other...not in lieu of a doctor. My GP and my neurologist don't think I
> have diabetes.
My PCP and the chief of endocrinology at a university hospital didn't
think I had it, either, til I bought a blood glucose meter and showed
them my readings. I still haven't had a DM range fbg. A large study on
the web site I pointed you to showed that 70% of diabetics aren't
diagnosed by the fbg as compared to post meal testing.
I don't have any of the symptoms....frequent
> urination...blurred vision....none of the so-called symptoms.
I never had those, either. Those are VERY advanced DM symptoms. What I
did have was peripheral neuropathies same as you, and a lower fasting
blood glucose than yours.
I may just
> in fact have PN....
PN is a complication of another condition, it's not a cause of itself.
I'm going to talk to my GP about a 2 hour test and
> ask him about a glucose meter, but....I think you should try to be a
> little more "easy going on people suffering from an "illness" that has
> not been diagonosed by the medical community. Remember, they practice
> medicine, and we are the guinea pigs.
You do what you want, all I can do is offer my experience and
information with good peer reviewed documentation of the failure of the
recommended screening test to diagnose diabetes until it's *very* well
advanced. You'll have to decide how much effort and responsibility
you're willing to make to help yourself.
If your doctor blows your diagnosis, *he's* just had a bad day at the
office, but you live with increasing pain, likely vision, heart disease
and kidney failure to follow if you have DM that goes undiagnosed.
Susan
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