Re: Re: Enbrel anyone? Susie aka Elf

[Guest guest]

Kathi a couple years ago when I was with Dr. Stupid, for the arthritis. I told

him about my other " symptoms " . He insisted it was FMS. I read everything I

could get my hands on. And I did NOT " fit " the FMS in many ways. Yes, some

were similar, but that is where it ended.

From the onset of this MS I had some remarkable symptoms that usually do not

show until " later " in the disease...(they now tell me).

I complained to him (the former Dr.) about bowel/bladder, and loss of sense of

taste and smell (total loss) that occurred after a " relapse " . (These have

never returned) He sent me for MRI. And on the MRI the radiologists said in

his opinion it was Poss. MS, and needed to be followed up on. He recommended

this to my doctor.

Well, I pressed my Dr. Stupid for answers. In the meantime he did nothing but

ordered more antidepressants (which I could not take). Then I had another

" replase " of " whatever " ! So then he decided that I had " issues " because I was

difficult and did not want to take his medicines or steroid INJECTIONS (I will

never concent to this!). But since I CLAIMED to be having " spells " (of what he

said were FMS), and INSISTED that he follow up on the MRI, that he would send

me to a Neuro friend of his.

He did. This guy walked into the room, I was sitting. He took my hands and

bent them back, asked me " Does Parkinson's run in your family " ... I said NO.

He then just sat across from me and stared at me. (This was the EXTENT of his

" Neuro Exam! " ) I was very uncomfortable to say the least! Then I finally

broke the ice and said, " Did you look at the MRI? What about the MS diagnosis

the Radiologists made? " He said, " I don't have to look at the MRI...I KNOW

what you have, I talked to your other doctor... " I said, " Well, WHAT is

this? " He said, " It is PTSS. " (that's Post Traumatic Stress)

I about fell out!

He said he talked to Dr. Stupid, and felt I had some " mental issues " , and that

if I would not take the other doctors medication, for " depression/pain " , that

this PROVED I had Mental Issues!!! And I had to take his. He sent me away with

a prescription for yet ANOTHER...Antidepressant!!!

So I still kept seeing Dr. Stupid. I figured, Hey, maybe I am wacko.

In the meantime, those " MS-like relapses " which were SUPPOSE to be PTSS, were

coming closer...about every 6 months apart, and getting harder and harder to

" recover " from. And each time, some little something did not " return " .

Then Dr. Stupid put me on the MTX for my arthritis. He refused to treat the

PAIN with pain medication, stating that he KNEW I was alcoholic! (I cried that

day in his office when he said that!) I have NEVER drank in my life! I tried

once when I was 15, and once when I was 37. (I am 48 now)... He said, " Yea,

right... " He even put in my records I SAID that I " was a cheap drunk " ... don't

ask me WHY he said this! But I do have the records! And am humiliated that

statement it in there! Within 2 weeks of starting the High dose of Injectable

MTX, I complained of Vaginal/Gums bleeding, skin bleeding just by bumping it.

I mean, BLEEDING. And complained of extreme congestion in lungs. He REFUSED to

do an initial Chest x-ray. Said it " was not required! " (I asked him if it was

not " required " ? He was adamant.) He said BLEEDING IS NOT A SIDE EFFECT OF

MTX!!! (Found out from my OBGYN, YES, it IS...its used as abortion drug

because of this!)

He told me my lungs were " clear as a bell " by just " listening " . He said this

up until 2 weeks before I came down with Pneumonia which kept me housebound

and in bed for 4 1/2 months on Oral and Injection Antibiotics. (We fired him

when I came down with the Pneumonia) I was finally able to get about somewhat,

the end of this past April. I then found a GOOD ARTHRITIS doctor who put me on

the MEDROL dose pack and followed up with 10 mg Pred. daily. The Inflammation

and Swelling responded almost immediately! I was thrilled!

In the meantime, the arthritis was becoming unmanageable for the PAIN aspect,

however. The new Doctor (Arthritis) gave me Codeine. Worked wonders in combo

with the Pred! Then, The " MS " that was " PTSS " (according to Dr. Stupid) was

becoming unmanageable still, and it was now coming with " relapses " every 5

months apart, instead of 6...and never righting itself, just " blending " on

into the next " relapse " .

By the way, when I was seeing Dr. Stupid, I had even complained about the loss

of vision, pain in eye, loss of color perception. Dr. Stupid said it was " in

my head " .... and when I kept INSISTING, he finally sent me to an Eye Doctor

(which by the Grace of God turned out to be on of the best in this part of GA)

And this little guy was so wonderful. He did not agree with Dr. Stupid and

prodded me to " Pursue the ORIGINAL diagnosis of the MRI " ... he firmly believed

it was presenting itself (MS) further back along the part that he could not

" see " from the front of my eye. He gave me report and graph of my eye exam for

the VISUAL loss... MUCH loss he said. And the " loss " compared to what MS does.

He pressed again for me to see a NEW Neuro. I did not heed him however...I

was too " tired " to go to yet another doctor and be told I crazy.

Well... this past summer I had a Lymph node biopsy. After the biopsy the

doctor (my OBGYN) gave me oral antibiotics. I guess that was too much for my

stomach.

The good NEW ARTHRITIS doctor's medicine, the Medrol Dose Pack, and reduced to

10 mg Pred daily was working fine alone...until I added this Antibiotic!

But when the OBGYN put me on the antibiotics, it must have not mixed with the

Pred for me..... I got ulcer and had to stop ALL meds! When I stopped the

Pred. it was about 2 weeks later...I had another " replapse " of the MS-like

symptoms that were SUPPOSE to be PTSS (according to Dr. Stupid)!!! This one so

bad it effected my neck muscles and swallowing, my only " good arm " , and my

partially " good leg " !!! I was scared to death! My speaking/thinking so

severely effected my husband was scared to death and rushed me to

Hospital...in the DAY time...KNOWING the Health Ins. would be hard to get paid

off! So if you knew my cheepie husband, you would have to know HE was scared

to risk " paying out of pocket " a HUGE ER BILL!

Once There at the Hospital, which by the way was where my sister is Nursing

administrator and she was Nursing Instructor and taught nursing. She

immediately got a Dr. she knew to be good for diagnosis. He was also #1 in

doing Lumbar punctures.

She never mentioned MS to him or anyone else in the ER. But when he stood

there with me for awhile he and both his nurse said, " How long have you had

MS? "

I said, " I don't have MS " ... (He showed me the " Babinski sign " on me, and that

NEURO that Dr. Stupid did not even so much as do that!)

They said.... " Errr.... oh. "

So then the battery of " tests " began! They punctured everything, nudged

everywhere, took every bodily fluid they could think of! They ruled out

everything from LYME to SLIME... And you know what? This RELAPSE knocked me

on my butt so badly, I did not even object, or fight them!

He checked for all CNS / muscular degenerative diseases he had access to

testing. And that was not enough for him... he sent me by ambulance to

Savannah's Hospital. (Hey! The one in the Book " In the Garden of Good and

Evil! "

There he got me what he said is one of the " best " Neurologists in the area...

Lucky for me, a WOMAN, because I was about fed up with hurried MEN doctors

telling me I was neurotic woman " making up " symptoms.

She then did every " imaging " test, blood test imaginable, CT, MRI, x-rays,

death ray, man-o-ray....you name it! I had needles shocking, jabbing and

graphing my reactions... I was pin cushion! From head to toe! I was so

drugged I don't even know WHAT ALL. I was questioned, and quizzed, and

whizzed to exam rooms... I was given what seemed to be the " road test for

drunks " .... everything but a breathalyzer! You would have thought I was a

terrorist suspect!

Then they released me! Telling me NOTHING!!!!!! Wow! I had a really BAD week!

And then I was left to go home hardly able to walk or function from the " PTSS

relapse " ...AGAIN!

So a week later she calls me.... she said that all the tests she had done, and

the Dr. at the other hospitals ER had done, were in. And that it EXCLUDED

everything it " could be " ... but ONE thing. And it was something they

" suspected " when first seeing me...but they had to exclude first, just in

case. And they needed ONE MORE MRI, this one with CONTRAST... Then I KNEW.

So I said, " By the way 1 1/2 years ago I had MRI from a Dr. in the town I live

in... And The Radiologists said he suspected MS...but the Dr. I was seeing

said it was " just " PTSS. " She was silent. Then said, " Bring that MRI... by

the way...WHAT follow up tests did he do when he got the radiologists

report? " I said... " NONE. " Silence again...

So I go for the MRI contrast.

And I waited.... another week. She called me and said to come in.

It was there that she told me that it was indeed MS. Every test either ruled

out something else, or helped to diagnose the MS. From the CSF fluid to the

MRI, to my symptoms and " losses " presented. On and on. I don't know WHAT all

she actually said after that! She said that what alarmed her so much was the

RAPID CHANGE in Lesion load since 1 1/2 year since that last MRI. And that it

was not a " good sign " . And that she was so " thankful " that we had that one to

go by. She said something about " given my AGE of onset, the fast pace of

relapses, and the amount of loss " of things that she is not actually sure what

" type " I fall into as yet. She then pressed me for Dr. Stupid's name. I gladly

gave it to her. It is REQUIRED, that when a Radiologists reports so much as

" POSSIBLE MS " , that it is SUPPOSE to be " followed up on. " And he did not. The

Neuro Dr. Stupid sent me to did not even do a work up or any tests specific

for MS diagnosis! She wanted HIS name too! I didn't care...I gave his to her

too. I told her how they both tried to state that I had just " mental issues "

and needed years of therapy to wade through it all...and she just raised one

of her eyebrows and said, " yea, right... "

She said that she is putting it down as RRMS... BUT, that it does seem, by the

look of previous MRI, to be going " progressive " ...and until she is sure, she

wanted me on an ABC drug. She said she wanted to see if it slowed it down

somewhat. She will do another MRI in February.

I talked to the MS FOUNDATION about getting a Support Group started in my

area. I repeated my " story " to the representative I talked with. She is

finding me the " closest " Clinic that SPECIALIZES in MS. Only MS. SHe said it

may be a few hours drive, but will be worth it. And she wants me to go and

get the specific " place " I am at with MS. So I can get the most aggressive and

helpful treatment. This lady from the MS FOUNDATION was a blessing indeed! So

I am waiting for her to call me back next week about that. She will also send

me my " package " or rather as she said, " MY BOX " of materials for getting

Support Group off the ground. I look forward to doing this, because as you can

see... the area I am in, is NOT known for CARING HEALTH CARE! And anything I

can do to help support or point someone in right direction, I feel...will be

one step in making up for Doctors like my ORIGINAL Dr. STUPID.

I have been through Hell, to say the least!

With no sense of Taste and Smell...and the spasms it is seeming to be causing

in my stomach, etc. it is causing me to loose weight. So I try my HARDEST to

" maintain " ... even in spite of no appetite, not being able to " taste " it or

have the luxury of " smelling " that wonderful THANKSGIVING TURKEY cooking in

the oven... etc. It is hard. I have also always grown Herbs. For the SMELL,

and beauty and FLAVOR in cooking. So is quite tramatic to not have the gift to

" enjoy " them.

I have Just as hard a time to GAIN as someone trying to LOOSE weight. I know

most ya'll think, " Yea, RIGHT! Don't even compare yourself to ME! " But it is

true. It is just as hard. And just as Health Urgent, as what overweight can

cause. Kinda like discrimination in reverse. Just as " hurtful " with remarks

made to me, as overweight/loweight clichés. It also adds to problem of

detecting " bad food " , or a fire smoldering, or a dirty baby diaper!

And the " spastic " aspect of MS is a two edged sword for me...as I have the

Arthritis. With Arthritis it is imperative to keep your MUSCLES fit and

" supportive " of your joints. Well... it don't matter how " fit " I try to keep

them, it won't work the same for me.

BY THE WAY......

This a.m. I got up... and it was as if I have never been " DEPRESSED " a day in

my life! That is so strange!!! I did this last week! It is amazing. But again

I say, the DEPRESSION sets in with a vengeance with that medication (AVONEX)

and I dare say, to the DANGEROUS point. And each time it strikes, then

withdraws I get to thinking... " Hey, maybe it wasn't THAT bad... " Ha! But yes,

it is.

I talked to NEUROLOGISTS. She said hold off on shot until she calls me back

this MONDAY. (Monday is shot day for me) I also talked to AVONEX pharmacy.

Now, this man was very special and very NICE and wonderful concerned man! He

thinks that regardless of what Dr. says to do, that they at BIOGEN prefer me

to SKIP a dose. And then see the doctor about what steps to next take. (About

stopping it or not) He said they have seen it (depression), though seldom, in

patients. And the " hearing loss " , is seen also! And also not being able to

sleep those first few days after the shot. So I felt better after talking to

them!

Arthritis is Autoimmune... and several other things on this list. MS is also

considered Autoimmune.

I just got hit with a double wammy!

Susie (Elf)

Kathi in OK wrote:

> Oh Susie: I wish I could help......I have two

> shoulders and your welcome to use either or both if

> needed.....I have suffered from the NO SLEEP....and it

> is a bummer...it also could be contributing to the

> feelings you are going through...if your docs feel

> that way or have expressed this to you...it is time to

> find a new one...everyone has different reactions to

> drugs...I dont think that makes you crazy or

> difficult. Have you had all the tests for MS,,,,,MRI

> brain, spinal tap, the visual evoked eye and eeg?

> Just curious because that was my first diagnosis they

> made from MRI of the brain...but the other tests made

> it a no go......

[Guest guest]

Susie, it always makes me so upset to think of or read about what you've

been through with Dr. Stupid and his goofy friends. Do you suppose Dr.

Stupid and Dr. Stupid, Jr. (his neurologist buddy) would both be

suffering from PTSS after reading that you are suing them for

malpractice?

Re: [ ] Re: Enbrel anyone? Susie aka Elf

> Kathi a couple years ago when I was with Dr. Stupid, for the

arthritis. I told

> him about my other " symptoms " . He insisted it was FMS. I read

everything I

> could get my hands on. And I did NOT " fit " the FMS in many ways. Yes,

some

> were similar, but that is where it ended.

> From the onset of this MS I had some remarkable symptoms that usually

do not

> show until " later " in the disease...(they now tell me).

> I complained to him (the former Dr.) about bowel/bladder, and loss of

sense of

> taste and smell (total loss) that occurred after a " relapse " . (These

have

> never returned) He sent me for MRI. And on the MRI the radiologists

said in

> his opinion it was Poss. MS, and needed to be followed up on. He

recommended

> this to my doctor.

> Well, I pressed my Dr. Stupid for answers. In the meantime he did

nothing but

> ordered more antidepressants (which I could not take). Then I had

another

> " replase " of " whatever " ! So then he decided that I had " issues "

because I was

> difficult and did not want to take his medicines or steroid INJECTIONS

(I will

> never concent to this!). But since I CLAIMED to be having " spells " (of

what he

> said were FMS), and INSISTED that he follow up on the MRI, that he

would send

> me to a Neuro friend of his.

> He did. This guy walked into the room, I was sitting. He took my hands

and

> bent them back, asked me " Does Parkinson's run in your family " ... I

said NO.

> He then just sat across from me and stared at me. (This was the EXTENT

of his

> " Neuro Exam! " ) I was very uncomfortable to say the least! Then I

finally

> broke the ice and said, " Did you look at the MRI? What about the MS

diagnosis

> the Radiologists made? " He said, " I don't have to look at the MRI...I

KNOW

> what you have, I talked to your other doctor... " I said, " Well, WHAT

is

> this? " He said, " It is PTSS. " (that's Post Traumatic Stress)

> I about fell out!

[Guest guest]

My luck he'd say, " Pick a number...go to the end of the line. "

I do know that if I get this MS Support Group off the ground and flying,

that if I hear someone mention his name... I will be sure to Highly

discourage *understatement!* their using him!

I am suppose to get my Box of stuff from the MS Foundation next week.

Video's, books, Materials, etc. Hope I can be up to handling it all.

Has anyone on this list started a RA Support Group in their County or

Town through the Arthritis Foundation? Or do they have opportunities to

do this? Am wondering.... can use all the pointers I can get, if someone

else here has " been there, done that. "

Susie (Elf)

wrote:

> Susie, it always makes me so upset to think of or read about what

> you've

> been through with Dr. Stupid and his goofy friends. Do you suppose Dr.

>

> Stupid and Dr. Stupid, Jr. (his neurologist buddy) would both be

> suffering from PTSS after reading that you are suing them for

> malpractice?

>

>

>

>

> Re: [ ] Re: Enbrel anyone? Susie aka Elf

>

>

> > Kathi a couple years ago when I was with Dr. Stupid, for the

> arthritis. I told

> > him about my other " symptoms " . He insisted it was FMS. I read

> everything I

> > could get my hands on. And I did NOT " fit " the FMS in many ways.

> Yes,

> some

> > were similar, but that is where it ended.

> > From the onset of this MS I had some remarkable symptoms that

> usually

> do not

> > show until " later " in the disease...(they now tell me).

> > I complained to him (the former Dr.) about bowel/bladder, and loss

> of

> sense of

> > taste and smell (total loss) that occurred after a " relapse " . (These

>

> have

> > never returned) He sent me for MRI. And on the MRI the

> radiologists

> said in

> > his opinion it was Poss. MS, and needed to be followed up on. He

> recommended

> > this to my doctor.

> > Well, I pressed my Dr. Stupid for answers. In the meantime he did

> nothing but

> > ordered more antidepressants (which I could not take). Then I had

> another

> > " replase " of " whatever " ! So then he decided that I had " issues "

> because I was

> > difficult and did not want to take his medicines or steroid

> INJECTIONS

> (I will

> > never concent to this!). But since I CLAIMED to be having " spells "

> (of

> what he

> > said were FMS), and INSISTED that he follow up on the MRI, that he

> would send

> > me to a Neuro friend of his.

> > He did. This guy walked into the room, I was sitting. He took my

> hands

> and

> > bent them back, asked me " Does Parkinson's run in your family " ... I

> said NO.

> > He then just sat across from me and stared at me. (This was the

> EXTENT

> of his

> > " Neuro Exam! " ) I was very uncomfortable to say the least! Then I

> finally

> > broke the ice and said, " Did you look at the MRI? What about the MS

> diagnosis

> > the Radiologists made? " He said, " I don't have to look at the

> MRI...I

> KNOW

> > what you have, I talked to your other doctor... " I said, " Well,

> WHAT

> is

> > this? " He said, " It is PTSS. " (that's Post Traumatic Stress)

> > I about fell out!

>

>

[Guest guest]

Hi Susie,

Would you tell me what kind of systems you may have?For the MS please, I

don't think I have it but I have had a few other systems that are borthering me.

It could be all drug related or a poor nerves in my fingers,I have asked the

group if they have that problem so I can rule some things out.

Thanks for listening to

me, I'm kinda lost some were.

Jane-Wi

Elf <sheadley@...> wrote:My luck he'd say, " Pick a number...go to the

end of the line. "

I do know that if I get this MS Support Group off the ground and flying,

that if I hear someone mention his name... I will be sure to Highly

discourage *understatement!* their using him!

I am suppose to get my Box of stuff from the MS Foundation next week.

Video's, books, Materials, etc. Hope I can be up to handling it all.

Has anyone on this list started a RA Support Group in their County or

Town through the Arthritis Foundation? Or do they have opportunities to

do this? Am wondering.... can use all the pointers I can get, if someone

else here has " been there, done that. "

Susie (Elf)

wrote:

> Susie, it always makes me so upset to think of or read about what

> you've

> been through with Dr. Stupid and his goofy friends. Do you suppose Dr.

>

> Stupid and Dr. Stupid, Jr. (his neurologist buddy) would both be

> suffering from PTSS after reading that you are suing them for

> malpractice?

>

>

>

>

> Re: [ ] Re: Enbrel anyone? Susie aka Elf

>

>

> > Kathi a couple years ago when I was with Dr. Stupid, for the

> arthritis. I told

> > him about my other " symptoms " . He insisted it was FMS. I read

> everything I

> > could get my hands on. And I did NOT " fit " the FMS in many ways.

> Yes,

> some

> > were similar, but that is where it ended.

> > From the onset of this MS I had some remarkable symptoms that

> usually

> do not

> > show until " later " in the disease...(they now tell me).

> > I complained to him (the former Dr.) about bowel/bladder, and loss

> of

> sense of

> > taste and smell (total loss) that occurred after a " relapse " . (These

>

> have

> > never returned) He sent me for MRI. And on the MRI the

> radiologists

> said in

> > his opinion it was Poss. MS, and needed to be followed up on. He

> recommended

> > this to my doctor.

> > Well, I pressed my Dr. Stupid for answers. In the meantime he did

> nothing but

> > ordered more antidepressants (which I could not take). Then I had

> another

> > " replase " of " whatever " ! So then he decided that I had " issues "

> because I was

> > difficult and did not want to take his medicines or steroid

> INJECTIONS

> (I will

> > never concent to this!). But since I CLAIMED to be having " spells "

> (of

> what he

> > said were FMS), and INSISTED that he follow up on the MRI, that he

> would send

> > me to a Neuro friend of his.

> > He did. This guy walked into the room, I was sitting. He took my

> hands

> and

> > bent them back, asked me " Does Parkinson's run in your family " ... I

> said NO.

> > He then just sat across from me and stared at me. (This was the

> EXTENT

> of his

> > " Neuro Exam! " ) I was very uncomfortable to say the least! Then I

> finally

> > broke the ice and said, " Did you look at the MRI? What about the MS

> diagnosis

> > the Radiologists made? " He said, " I don't have to look at the

> MRI...I

> KNOW

> > what you have, I talked to your other doctor... " I said, " Well,

> WHAT

> is

> > this? " He said, " It is PTSS. " (that's Post Traumatic Stress)

> > I about fell out!

>

>

[Guest guest]

Hi Jane!

This guy is really delightful. And even though it is a personal web

site. He hits the nail on the head. You can check his site. You have to

keep going to the end of page and click onto the " NEXT " page.

http://multiplesclerosissucks.com/

This is his INDEX page: http://multiplesclerosissucks.com/toc.html I

think what caught my eye was his HONESTY in the URL NAME he used. That

about sums up MS, in my opinion!

And here is another site... This is a really OUTSTANDING site for

technical aspect, however.

http://www.mult-sclerosis.org/explainingms.html

But you can not go by a few random " symptoms " , as it does mimic other

things. FMS especially. AND arthritis. And a world of " NeuroMuscular

degenerative diseases. " You would have to have a complete workup. And

like they all say, it can take years to diagnose it. Even if it does not

show in MRI it can be in SPINAL cord. And some people never do have

positive MRI. Same for Lumbar and checking CSF fluid. Mine showed

Positive. But Some never have the " bands " , even though they have MS

quite severe.

As for this LIST. It is wonderful. But we can not go by the bits and

pieces of " symptoms " that each of us have. We are here to SUPPORT each

other and bond with a common theme... The name of that theme would be

AUTOIMMUNE.

We can exchange HONEST information of DRUG side effects and things we

have tried and failed...or tried and worked.

And though this list is nice to have people on here, TELL YOU THINGS...

you have to Educate YOURSELF by reading, reading, researching,

researching...on your own. And stay in the INFORMATIVE medical sites at

first...not the " cure it " sites. You want INFORMATION, not a sales

pitch. Remember the old expression: " If it sounds too good to be

true...it probably is! "

Even tho a and give us a world of LINKS to check out...don't

let the education stop there! They are not responsible for our

education...WE ARE. a and can give us only the information at

hand that they have found that fits our questions. It is up to us to

keep SEARCHING EVEN DEEPER. And EDUCATE ourselves with their hard work

of researching our questions and concerns.

I look at it this way... in order to fight your foe...you HAVE to KNOW

him. Then you can make the right stand.

And you can't know your foe from " hear say. "

An example of " hear say " would be this:

I know that when I first started getting " sick " about 6 or so years ago,

people would say, " That sounds like it could be ...., because my mother

in laws sisters brothers wife's uncle's mothers' 3rd cousin had that. "

You don't want that kind of info, NOR comparisons to your symptoms!

When those first Doctors I had, that are now GONE.... told me that it

was not MS, but PTSS.... I read everything I could on PTSS. And nothing

" fit. " Those doctors even admitted that they did not even look at the

clinical evidence, MRI, symptoms, prolonged damage from relapses, etc.

They said, " We don't NEED to...we just KNOW. " (more or less!) They just

hung a tag on what they saw visually, and was easily explained.

So I EDUCATED ME. And stood my ground that it was not PTSS from the tons

of material I read. I did not say it WAS MS to these doctors... I just

told them I did not " fit " the FMS or PTSS data I had researched!

All those years and years (since I was about 20) of helping my sister in

her Medical studies and getting her Ph.D. by helping her RESEARCH

things...paid off for me! I am blessed in that experience. And she STILL

gets me to help her do RESEARCH on her malpractice cases she now does

for several groups of Lawyers. So Researching is ongoing for me. You

have to be objective.

As far as SYMPTOMS... I know a lot can be drug related.

My " intentional tremors " I have as results of MS, are bad enough...but

when I take the NEURONTIN for " pain " (which does not work, by the way!)

I get the Tremors accentuated just by taking 300 mg!!! They get so bad,

I literally can not feed myself or brush my hair or walk. (I fall into

walls, etc.) So for me the NEURONTIN takes something the MS gave me,

and made it WORSE. I tried this NEURONTIN off and on for 2 years now.

You would be surprised what pops up in a good SEARCH engine (I use

GOOGLE) if you put in precise symptoms. For instance, " spastic,

tremors, weakness, bowl bladder control, taste smell " ... MS was the

first that came up in a pattern.

As far as my symptoms, all of the above apply. Plus the " not knowing

your hand is on something " or holding something, symptom. If you put

something small in my hand, I could not tell you what it was. I could

guess, and possibly get it...but that is far as it goes. I have picked

up a skillet, bare handed, that I am frying fish in, and never " felt "

it, until later when I looked and saw the huge water blisters! I have to

be careful of my bath water, as I can not " feel or tell " extreme hot or

cold. I almost broke my hand a few months ago...I NEVER felt the pain of

that!

But I DO have severe back/joint and related MS pain! Just not " pain from

a NEW injury " type pain. It is strange.

If I get the least bit hot outside (or in house) it aggravates the MS,

and can make you feel as if you are having another relapse! (And I have

been " outdoors " person in summer all my life! NEVER bothered me till

this hit me!) That is why they had such a time with the RA & OBGYN

doctor checking my THYROID...every time it came back NORMAL, but still I

had trouble with symptoms of " thyroid " . It was a mess!

If I press on the gas petal of the car a few minutes, my leg gets the

intentional tremors so badly, I can not drive. I have to use the CRUISE

CONTROL. I can still do " road trips " on Interstates, but not trips to

Savannah traffic to my doctors. Reaction time too slow.

I get " confused " with ANY and ALL directions. Forget TELLING me how to

get some place. I have to have WRITTEN directions, step by step! And I

USE to be a wonder at finding places and things! For goodness sakes! I

helped my dad (who was one of the ones in charge of doing this) " map "

the whole county area of Mobile for the Routes for street by street home

dwellings of the Mobile Press Register years ago, that they in turn used

for the 911 system! And now, I can hardly find my way around there

anymore when I go back to visit! It is awful! But funny in a way, to my

girls. They take it light hearted and tease their " old mom " ! Kids have

a way of " lightening the mood " !

DON'T let me in a GROCERY STORE without a LIST!!! And if I don't scratch

off as I get things...believe it or not...I go and grab another one! It

is really funny...the looks I get at check out! I try to go to a certain

ladies lane, because she questions TWO of something that is odd! Most

checkers do not.

Your " reaction time " is about 10 SECONDS or MORE slower than " normals " .

But " reaction time " IS still there...just not fast. (I don't " startle "

anymore.) Reaction time effects many things... Which means when I call

the name of one of my girls I usually just say, " You know...#1 child " !

Then later I can call her name! It is quite funny if you stop and think!

I really should use a Cane when I walk, for the Balance...but not me! I

think it is that " pride thing " tugging me still. I have cut and carved

wooden Walking Sticks since I was young, to sell... I was taught and

learned from my Indian Grandfather... I *use* to sell them. But is hard

to carve now, due to the ARTHRITIS, and also the " thinking " aspect of

the nerves to my hands telling them what or how to carve. But I still

try every year, but with the " strength " gone from my arms and

weakness...it is about impossible to even cut the smallest limb for a

cane. (My 4 year old grandson helped me cut these last ones! That should

tell you how weak my muscles are.) I have about 30 of them sitting

here now to finish, I have prepped (scraped the bark & ruffed out) for

carving the " heads " on this season. But as yet haven't started, but

need to. I only cut the wood at certain times of year. So I have to get

up a certain amount by this time.

Wow... I writing a book!

Speaking of writing...that has gotten impossible for me also. I can not

do " structured thought " as I use to do. Mine is bad. I guess all those

leisons in brain have attacked something needed for that. But I manage

to beat out a poem or two ever so often now, still.

Boy... this message got LONG!

But as far as telling you about Poor Nerves in Fingers... I have BOTH

Arthritis AND MS...so I am still learning to differentiate between the

two on some of the symptoms!

As far as the MS symptoms... just too many to name. Some I have are what

I consider bad (and embarressing) ...some mild. I hope those URL's I

attached in the beginning of this message answers questions for you.

Jane...you so sweet. I have read your post. You seem very genuinely kind

hearted.

Elf

Jane wrote:

>

> Hi Susie,

> Would you tell me what kind of systems you may have?For the MS

> please, I don't think I have it but I have had a few other systems

> that are borthering me. It could be all drug related or a poor nerves

> in my fingers,I have asked the group if they have that problem so I

> can rule some things out.

> Thanks for

> listening to me, I'm kinda lost some were.

>

>

> Jane-Wi

> Elf <sheadley@...> wrote:My luck he'd say, " Pick a

> number...go to the end of the line. "

> I do know that if I get this MS Support Group off the ground and

> flying,

> that if I hear someone mention his name... I will be sure to Highly

> discourage *understatement!* their using him!

> I am suppose to get my Box of stuff from the MS Foundation next week.

> Video's, books, Materials, etc. Hope I can be up to handling it all.

> Has anyone on this list started a RA Support Group in their County or

> Town through the Arthritis Foundation? Or do they have opportunities

> to

> do this? Am wondering.... can use all the pointers I can get, if

> someone

> else here has " been there, done that. "

> Susie (Elf)

>

> wrote:

>

> > Susie, it always makes me so upset to think of or read about what

> > you've

> > been through with Dr. Stupid and his goofy friends. Do you suppose

> Dr.

> >

> > Stupid and Dr. Stupid, Jr. (his neurologist buddy) would both be

> > suffering from PTSS after reading that you are suing them for

> > malpractice?

> >

> >

> >

> >

> > Re: [ ] Re: Enbrel anyone? Susie aka Elf

> >

> >

> > > Kathi a couple years ago when I was with Dr. Stupid, for the

> > arthritis. I told

> > > him about my other " symptoms " . He insisted it was FMS. I read

> > everything I

> > > could get my hands on. And I did NOT " fit " the FMS in many ways.

> > Yes,

> > some

> > > were similar, but that is where it ended.

> > > From the onset of this MS I had some remarkable symptoms that

> > usually

> > do not

> > > show until " later " in the disease...(they now tell me).

> > > I complained to him (the former Dr.) about bowel/bladder, and loss

>

> > of

> > sense of

> > > taste and smell (total loss) that occurred after a " relapse " .

> (These

> >

> > have

> > > never returned) He sent me for MRI. And on the MRI the

> > radiologists

> > said in

> > > his opinion it was Poss. MS, and needed to be followed up on. He

> > recommended

> > > this to my doctor.

> > > Well, I pressed my Dr. Stupid for answers. In the meantime he did

> > nothing but

> > > ordered more antidepressants (which I could not take). Then I had

>

> > another

> > > " replase " of " whatever " ! So then he decided that I had " issues "

> > because I was

> > > difficult and did not want to take his medicines or steroid

> > INJECTIONS

> > (I will

> > > never concent to this!). But since I CLAIMED to be having " spells "

>

> > (of

> > what he

> > > said were FMS), and INSISTED that he follow up on the MRI, that

> he

> > would send

> > > me to a Neuro friend of his.

> > > He did. This guy walked into the room, I was sitting. He took my

> > hands

> > and

> > > bent them back, asked me " Does Parkinson's run in your family " ...

> I

> > said NO.

> > > He then just sat across from me and stared at me. (This was the

> > EXTENT

> > of his

> > > " Neuro Exam! " ) I was very uncomfortable to say the least! Then I

> > finally

> > > broke the ice and said, " Did you look at the MRI? What about the

> MS

> > diagnosis

> > > the Radiologists made? " He said, " I don't have to look at the

> > MRI...I

> > KNOW

> > > what you have, I talked to your other doctor... " I said, " Well,

> > WHAT

> > is

> > > this? " He said, " It is PTSS. " (that's Post Traumatic Stress)

> > > I about fell out!

> >

> >

[Guest guest]

<PRE>my therapist always says he only knows one thing about ra. that is anger.

anyone else ever hear of this??? just curious. kathy in il