Hi from Rob

rob · Posted: Sat Jul 12, 2008 3:41 pm Post subject: Hi from Rob

Hi everyone,

I just wanted to tell everyone that I fell again last night. This time it was like somebody flipped a switch, and I lost all control. I hit hard, but only sprained my thumb this time. I hit like a load of bricks though. I couldn't even break my fall. I have a neurologist appointmeant on monday. It got moved up. I don't now if it's Lupus related CNS symptoms or MS. I have been struggling to piece together sentencese today. I cannot remember my street addreess or my cats names. I have a thought and it just disappearss. I know I thought something, but I don't knoww what. They are going to do a lumbar punkture, which they did not do at first. Have to have more testd with the electrical, I can't remember what they are called. It's a measurment of nreve signals. I sound like crAP, so I need to go. thanks everyone. I 'm sorry I sound awful. No spelling bee for me right now.
_________________
It's better to be considered a has-been, than a never-was.

laurid8967 · Posted: Sat Jul 12, 2008 3:54 pm Post subject:

Oh, Rob,
Thats horrible...it really sounds like MS symptoms to me, but Im no doctor, of course. I hope the evoked potential test shows something they can help you with. Maybe some more prednisone if your myelin sheath is inflammed.
Please try to rest and let us know as soon as you can how you made out, OK?
Warm thoughts and many prayers coming your way....
Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Rastagirl · Posted: Sat Jul 12, 2008 4:09 pm Post subject:

Oh Rob, I am so, so sorry. Crying or Very sad

Sorry that you fell, that you are having these problems, that it's affecting your ability to recall things.

It is such a frustrating and scary feeling to have your body go out of control. To be fine one minute, and falling the next. No warning.

I wish one of us could be with you to pick up the pieces. To help you up, make sure nothing is broken, and give you the hug and reassurance that you are not alone.

I'm a tiny person, 5'2, barely 105 pounds, and I know you describe yourself as a big man (over 6 feet), but if I could not help you up, I would sit on the floor with you and hug you and hold you and let you know you are not alone. I would bring you ice for your sprained thumb, and find a way to crack a joke that would bring a smile to your face. Laughing

I know this doesn't do much good when you're on the opposite coast from me, but with my offering of words, I also offer my caring concern.

I am sorry that this is happening to you and I truly hope that your Neurologist will figure this out. I will pray that this will be something that they can fix.

My thoughts are with you today. Perhaps your cats won't mind being called "kitty" for the moment. I know they will love you anyway.

Sending my caring Cyberhugs your way.................

Lori

Oluwa · Posted: Sat Jul 12, 2008 4:15 pm Post subject:

Hi Rob..hugs full of love....

Did you get my last PM from yesterday, Rob?

Wanna do email chat? The PM stuff is sometimes hard remembering what the other said if you don't do the quote feature...

In case marijohelen@aol.com

Love,
Oluwa
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KathyW1958 · Bear Joined: 12 Jun 2008 Posts: 692

Hi Rob,
I am sorry to hear that you fell again and got hurt again. I feel for you big time. The electrical test they want to do on you is to test for Periferal Pneuropathy. I had that done on my legs. When they do the test do not take aspirin or any blood thinner. The used electrical impuls and needles pricks. They thought that I too had MS. I even went through the MRI on my head and a spinal tap. They did all this only to find out that I have PA Pernicious Anemia and have to take Vitamin B12 shots every month. Have they tested you for this as well? Do you have Sjogrens with your Lupus? I am just wondering. I am glad that you did not get hurt very seriously.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

mnjodette · Posted: Sun Jul 13, 2008 6:02 am Post subject:

Ah, Rob....I'm so sorry that more trouble's come your way. Don't feel like you have to post....just read. We don't give grades for spelling here. Wink

We're here for you. I wish one of us could've been there to help you. Sure could be either CNS lupus stuff or MS. Docs will have to sort that out. You're probably going to have a nerve conduction test of some kind? I hope today is a bit better - and I hope you're not alone. Can someone come stay with you for a bit? Check on you once in a while? Hope so....wish I could jet there and sit with you. Do take care and let us know how you're doing...when you feel up to posting.

Jody
_________________
"Always laugh when you can. It is cheap medicine." Lord Byron

NoodleMom · Show Poodle Joined: 09 Nov 2007 Posts: 272

Rob,
Im thinking about you. Sending warm thoughts and an big fuzzy teddy bear to land on .

K

hatlady · Tiger Joined: 16 Oct 2004 Posts: 810 Location: Illinois

Oh Rob, how frightening! I too am thinking of you and sending health-filled and hope-filled thoughts and prayers your way - -
_________________
~"I find hope in the darkest of days, and focus in the brightest. I do not judge the universe." (Dalai Lama)

rob · Posted: Sun Jul 13, 2008 12:28 pm Post subject:

Hi everyone,

I have my father here to help me with things. last night was bad. I tend to think too much, especially at night. I don't like doing that. What if this, what if that. Just have to tell myself there's nothing I can do about it today. My neuro appt. is at 11 am tomorrow. Till then just trying to put things out of my mind. My friend Wade from AZ sent me a funny picture. He took a screen shot from that movie A Christmas Story. The pic is the younger brother who had that huge snowsuit on. The one where he fell and couldn't get up because the suit was so huge. Wade took a funny old football helmet and put it on the snowsuit kids body, and photoshopped my face in the helmet. On the front of the suit it says"Rob's Bouncy Suit". The helmet is gold with these cheesy looking lighning bolts on the side. It will make me fall-proof! It's hilarious. Gave me a much needed laugh. i'm not as foggy today. I want to say thanks to all of you for your kind words, and support. It really really helps. I hope that I can give back the support you all have given me if any of you ever need it. I'll keep you all informed as to what happens tomorrow. Gotta go get some Zzzzz's for now.
_________________
It's better to be considered a has-been, than a never-was.

laurid8967 · Posted: Sun Jul 13, 2008 1:07 pm Post subject:

Hey Rob,
OK...Thats HILARIOUS!! I LOVE that movie...Glad your not as foggy. I think your brain fog floated down the East Coast and landed in my head...lol.
If you are up for it, please let us know how your appt goes tomorrow. Your having an Evoked Potentials test, right? Im praying all goes well.
And, by the way, you are always VERY supportive to others, including me. Its like we all take turns holding each other up...
Get your rest, and take care!!
Love Lauri
PS - Wear your helmet tomorrow! lol
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

Oluwa · Posted: Sun Jul 13, 2008 1:54 pm Post subject:

Oh Rob..stop...you do support, contribute with words, with encouragement, with laughs, with stories...life...so stop being silly.

I am, we are here for you..just as you have been with us...

Thinking too much of things that need not be thunk about..write what you feel, in any format, WORD, email, a forum when the mind tends to run in circles endlessly. Writing helps to put them into perspective and can ease the mind and calm the heart..

Head hugs..
Oluwa M.O.
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Oluwa · Posted: Mon Jul 14, 2008 6:36 am Post subject:

Rob..thinking of you...sending good vibes for you soon to be, in 5 minutes your 11AM appointment...mmmmmm

Asking for all good news...
Head hug,
Oluwa

P.S..site time is 20 minutes off...
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Saysusie · Posted: Mon Jul 14, 2008 9:54 am Post subject:

Rob;
I wish that I could be there to put you in your bouncy suit......To protect you from hard floors, sharp corners and table tops! I hope that you are able to let us know how your doctor's appointment went.
I can't tell you how sorry I am to hear of yet another fall and now, more concern about what is happening to you. But, we are all here for you and, no matter what, we will always be here for you.
Waiting to hear from you
Saysusie
_________________
Look For The Good and Praise It!

rob · Posted: Mon Jul 14, 2008 10:55 am Post subject:

Hi guys,

I'm home, and done with tests for today. I had an optic evoked potential test (optic nerve), and a somatosensory evoked potential test (hands and feet). Nothing particularly unpleasant about all of it. It's a bit messy though becvause of the gel they use. The neuro will compare todays findings with the findings from my last round of tests. If the electrical transmission over nerves are slower, then that's not good. I have another MRI tomorrow, again, not a big deal as far as tests go. Thursday, I have to have the test that I don't want to think about for now. I'm just thinking about what I need to do tomorrow. I have no fear of needles, unless they are sticking it in mt spine. If Kathy is on today and see's this, well, I understand your fear of needles better now. It's not much, but I've been invited to our local airshow to do some aerobatic demo flights with one of my R/C model planes. Been practicing for a few months now to get the feel back, but right now I don't think I'll be able to do it. I don't give up on anything easily, but there are safety concerns. I guess I shouldn't worry about it, as other things take priority right now. My thumb feels like my toe did last week. i'm tired. Gotta go get soame sleep. Thanks everyone.

Rob
_________________
It's better to be considered a has-been, than a never-was.

KathyW1958 · Bear Joined: 12 Jun 2008 Posts: 692

Hi Rob,
I hope that the tests are all good for you with no bad results. The needle test that they do for Periferal Pneuropathy of the legs is not bad. They just lightly *Poke with a Needle* your skin to see if you feel it. They take some type of computer reading when they use the electrodes. It is not real painful. I had it done and it showed periferal pneuropathy in my left leg, but the right leg was normal. They linked the neuropathy to the Pernicious Anemia as being the culprit that was causing it. Since I have started to take the B12 shots the feeling is now back in my left leg. I was scared that I would never get the feeling back and the tingling feeling in my hands and feet were horrible. My toungue got messed up is what made them look at Pernicious Anemia. I am glad that I did not have MS as that is what they looked for at first and ruled that out. Rob the needle pricks do not really hurt. Good Luck and you are in my prayers.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.