View Full Version : Hi from Rob
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.
07-12-2008, 04:54 PM
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....
07-12-2008, 05:09 PM
Oh Rob, I am so, so sorry. :cry: 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. :lol:
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.................
07-12-2008, 05:15 PM
Hi Rob..hugs full of love....http://www.freesmileys.org/smileys/hug005.gif (http://www.freesmileys.org)
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 deleted by me
07-13-2008, 04:29 AM
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.
07-13-2008, 07:02 AM
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.
07-13-2008, 07:46 AM
Im thinking about you. Sending warm thoughts and an big fuzzy teddy bear to land on .
07-13-2008, 11:22 AM
Oh Rob, how frightening! I too am thinking of you and sending health-filled and hope-filled thoughts and prayers your way - -
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.
07-13-2008, 02:07 PM
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!!
PS - Wear your helmet tomorrow! lol
07-13-2008, 02:54 PM
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..
07-14-2008, 07:36 AM
Rob..thinking of you...sending good vibes for you soon to be, in 5 minutes your 11AM appointment...mmmmmm
Asking for all good news...
P.S..site time is 20 minutes off...
07-14-2008, 10:54 AM
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
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.
07-14-2008, 12:09 PM
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 prick 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.
07-14-2008, 12:35 PM
I wish I had wonderful, emotion changing words to say when we anticipate something fun, something we look forward to and we are not able to do it…I can only think of one thing and that is..It sucks, big time Rob.
Do you have a friend, your Dad or someone who can accompany you to air show in the event of whatever may or may not happen while RCing the plane…the safety issues. That they can assume control…? You may just feel your best that day…don’t count yourself out, yet!
Tests, I won’t talk about them either….we just do what we gotta do, eh?
Head hug..stunt man.
07-14-2008, 01:55 PM
Glad you let us know how it went...Get some rest, ice your thumb, take some nice sleeeepppyyy pilllsss....
We will be here for you when you wake up. Oluwa is right...that sucks.
Love and prayers,
07-14-2008, 08:07 PM
I agree with Oluwa about the race with your model plane. Don't count yourself out entirely. Perhaps if you don't feel that you can participate, you and your dad can go and observe. Since it is something you love to do, I'm assuming that you also love to watch. Anything that will lift your spirits a bit and get your mind off of the test that you don't want to talk about.
In any event, know that we are rooting for you :multi: . Let us know how your other test results were!
Good morning all,
I'm up, and off for an MRI this am. It will be an easy day as far as tests go. My father is really stoked about the airshow. He brought the trailer we use to haul the planes over the other day. We talked, and decided that we will go to the show no matter what, and put the planes out on the flight line on display. If I am mentally up to it that day, I will fly one, or both. If not, people will get to see them close up on the ground at least. My aerobatic plane has a 14 foot wingspan, and my other plane is a jet. Both are quite heavy, and the jet will top out at around 270mph in level flight. Letting either of them "get away from you" could be a disaster at a public event such as this, hence the safety concerns. So, if I'm not on the top of my game that day, I won't fly, but we'll still have fun. The only thing I enjoy more than sailing, is flying my models. It's a perfect escape. Thanks for the kind words everyone. It's time to get ready to go, so I'll talk to you all later today or this evening. Hope all is well with all of you.
P.S.- I just noticed an ad on this page for a hobby shop that sells R/C planes! This robo-ad thing is really funny. Hobby shop ads on a Lupus Page!
07-15-2008, 05:41 AM
I hope that you have a very good day and I hope that you get to fly your planes. I will keep you in my prayers. Good Luck and do have fun.
07-15-2008, 09:15 AM
I'm so happy that you and your Dad decided to go, no matter what! You sound excited about it and, so, I am excited for you.
Have a great day! Let us know how it went and we'll be waiting here for you!
Oh yes, the ads do serve to give us a chuckle now and then. So, I guess in that perspective, they are ok!
Peace and Blessings
07-15-2008, 12:53 PM
I am so happy you decided to go...you are an inspiration to us all....
07-15-2008, 10:07 PM
I am sending you cyberhugs and you are in my thoughts and prayers. Have they tested you for Antiphospholipid Syndrome? It runs with Lupus, Sjogrens, etc. There are labs that can be run. The drop foot can also be related to another autoimmune poly_____. I am drawing a blank. I will look it up.
The memory issues are the same as you are experiencing along with migranes, headaches, and lightheadedness. Just a suggestion to run by your doctor prior to the lumbar puncture. I was told after the puncture, I would have to be flat on my back for 10 days with the possibility of migranes.
I can relate as I am not falling, but having migranes, lightheadedness, etc. Had an MRI, saw a neurologist in LA recommended by my rhuemy. MRI was normal. They are running several labs along with nerve conduction studies, too many to list.
The neuro stated he did not recommend a lumbar puncture; whew I was relieved. I hate needles and having blood taken every 2 weeks gets very old. I see a hematologist Thursday for more labs. :oops:
Please let us know how the tests go. Sending cyberhugs.
07-16-2008, 05:49 AM
So whats on your agenda today? A movie? Practicing R/C plane aerobatics? Sailing....? Skeet shooting?
When is the air show?
Just wanted to say, Hey..Hey...
07-16-2008, 06:12 AM
So, Rob, how was the air show? Did you decide to fly? Did you and your dad have a blast? Hope so! Thinking about you........
I'm a little better this am. Yesterday morning the neurologist office called and had to reschedule my spinal tap. I could have it done Friday, or I could come in at 10:30 Wednesday morning. I elected to just get it over with, so yesterday I spent the entire day on my back after the procedure. That is except for the ride home. The procedure itself wasn't particularly bad, but the headache that happened after was the worst I've ever had. I layed still on my back for about three hours at the medical center. All seemed OK, and they gave me the OK to have Dad drive me home. When I sat up I thought my head was going to explode. So we got home, and I immediately layed down and the pain was tolerable. This morning I feel like I have a bad hangover. So, all the tests are done, and I see the neuro on monday for all the results, and I assume a plan in case the tests show further CNS problems. I'm just relieved to have all the tests over with. Three days in a row at the med center is enough. So today is take it easy day. I have plenty of help from dad and sis. I hope everyone is doing well. I'll talk to you all later.
07-17-2008, 09:54 AM
I'm so glad that you feel better today. Boy, I could really empathize with you about the headache! I suffer from migraines something horrible and, as you said, it often feels like my head is going to explode; like something inside is trying to push its way out and it wants to come out en mass, through my eyes, my forehead, my crown....everywhere! Also, like you, I have to lie down in a completely darkened room with no sound and no movement!
When you were describing your headache, it brought back some horrible memories :lol:
Rob, you are so blessed to be so close to your Dad and to have him with you throughout all of your ordeals. And, now you have your sister and your Dad helping you. Yes, you are blessed. I just wish that you did not have to suffer so with this disease and all of the ways that it attacks us.
Continue to take it easy today, take care of you. Know that we are here for you and are always wishing you well.
Peace and Blessings
07-17-2008, 12:16 PM
rob :eating: I thought this little guy was cute so I am sending him to ya. Hope you feel better and better in the next few days. How wonderful that you have your family to care for you.
I've never seen a little guy like that before. He sure is hungry! Saysusie, the feeling was like when you drink a really cold drink or milkshake too fast, and you get that nasty little 10 second headache, but in this case you keep drinking and it does not go away. I was just up and walking around, and I feel pretty good. Actually, anything is better than what I felt like yesterday. Some people lay on their back for an hour after having a lumbar puncture, and feel ok upon sitting up. They told me other people can be out of it for days, so I'm lucky. It's a little over 24 hours since the procedure, and I'm functional.
07-17-2008, 01:43 PM
Hey you Roblet...
Tapped like a keg, eh? Still feeling hung?
Now that is behind you...what's the plans for the weekend?
Me, a movie...corn popped in a bag...
07-17-2008, 02:08 PM
I'm glad you are on the mend from your spinal tap. How was the MRI?
Long time no talk! How are you? I didn't get any detailed results yet from the MRI other than a comment that nothing has really changed. No better, but no worse. They did the evoked potentials tests on monday. I go in this following monday to talk about all the results from all the tests, and they will be comparing the latest MRI and Potentials to my previous ones. See if there is a pattern I guess. Don't know exactly how the spinal fluid fits into the equation at this point. Oluwa, for the weekend, we're working on planes. Tomorrow we're going to roll the R/C jet out into the driveway, chain her down and fire up the engines. Gotta find my earplugs. If all the sysrems check out, we're going to the airstrip for some high speed taxi runs, and maybe fly. It's been a year since I've flown a jet, so I'm easing into it slowly. The airshow is two weeks from Saturday. Are you going to the movies? I rented a movie called The Bucket List with Morgan Freeman and Jack Nicholson. Going to watch it tonight. Supposed to be good. Anyway, that's pretty much it. I am just happy to be feeling better. Everthing else between now and monday, is gravy.
07-17-2008, 06:58 PM
The Bucket List is a good movie. I watched it last week sometime.
07-18-2008, 03:31 AM
Rob, there's a big airshow here this weekend - Blue Angels coming; lots of other things. We have a cabin rented for the weekend or we'd be going. I do love airshows. I've never been to a R/C air show, though.
How are you feeling this morning? Recovered from all the tests. I'm still an insomniac so don't get much sleep. Been up listening to the birds. Looks like it's going to be a pretty day today, so I'm grateful for that.
We have the Bucket List on our list of Netflix movies to come. I'm glad to hear it's good. Some critics 'panned' it, but what do they know? We just rented American Gangster. I was a little afraid it would be nothing but violence and blood (and there was some of that) but it was a really great story. I had no idea it was a true story. Denzel Washington did a fantastic job, and Russell Crowe was great, too. I'd recommend it.
Hope you have a good day.
07-18-2008, 07:54 AM
Hi Rob -
Glad to hear your up and about a bit. I do know some info on MS, as they thought I had this for quite a while a few years back. I believe the spinal tap is to check for oglinical bands (sp), which are present during MS. It is one of the diagnostic tools of docs to Dx. Maybe the more there are, the more active your flare is.
They are going to compare last MRI to this MRI to check for any new and/or active lesions. They will be able to see which ones were there last time, and if there are any new ones. Active lesions show up in the T1 T2 imaging as bright spots. Old ones are not bright.
I believe they are probably looking for any disease progression. They usually determine what type of meds to put you on by looking at any disease progression. I know the whole process really stinks, but it sounds like you have some on-the-ball doctors. MS is very hard to monitor, so it sounds like your doctors are doing a good job.
Unfortunately, though, YOU'RE the one that has to take all the tests!! I have had several spinal taps...I was fortunate not to have the bad headache with it, though I was on a BOATLOAD of pain meds back then!
Anyway, Youve sure been through the ringer this month!! Im hoping this is the beginning of some rest and disease-quiet for a while...
glad youre doing a little better!!
07-18-2008, 08:19 AM
Planning to see Wall.E..the little girl in me likes those type of flicks...
Firing up the engines on your jet this morning? Will you be displaying your crafts on the tarmac at the air show....Air shows always bring a crowd, being an AC on a NAS, it was always packed.
I never controlled in an air show...I worked Base Ops during that time, more exciting and fun to me, than being in a tower as that was my regular job. More people..more interaction.
We had seen Bucket List on DVD, two of my favorite actors..so what did you think? I, well, actually dozed off during it...
My crud was labeled as asteatotic eczema, a little dab of steroid cream will do me was prescribed. If it is it, because to me it doesn't look like it but if it becomes to resemble the snaps I have seen online..ewww. I get the willies. Will I look like a 90 year old woman's shins...ewwweeee. I shutter just thinking about it...
Rob, I am happy your headache lifted after the keg tap...and hey, enjoy the gravy this weekend...
Well, I didn't watch the movie yet, because I "dozed off" about 8 o'clock last night, and I just woke up to see it's 12 noon! I guess I needed some sleep. Headache is GONE GONE GONE, like the song. Anyway, Jody, the airshow here is the regular airshow we have every year, and radio control planes are just a small part of it. The airport here is actually a base for ANG KC-135 Refueling tankers, and for U.S. Navy P-3 Orion anti-submarine warfare planes. Usually the Thunderbirds are the big attraction of the day, but due to a sheduling conflict, they won't be there this time. But, there will be a bunch of other military and civilian aircraft, and The Confederate Airforce will be there with various restored WWII planes including a B-17 Bomber, similar to a B-24 Liberator. My R/C jet is a replica of the airplane the Blue Angels fly, the F-18 Hornet. Mine is about 12 feet long, and is painted grey rather than the Blue Angels blue and yellow. It has two miniature jet engines that are scaled down versions of the real ones. It's almost as loud as a real one as well. Goes about 270 mph in level flight, a real crowd pleaser, hence my invite to demo it to the crowd. Gonna watch the Bucket List tonight, can't wait. Sounds good.
Lauri, re-reading my various books on MS, you are right with your info on the reason for spinal fluid analysis. Oluwa, I haven't heard of Wall E. Is that a Disney film? The kid in me wants to go see this new animated Star Wars Movie. It looks cool. I saw American Gangster as well, and it was surprisingly good. I may end up buying that one. Denzel Washington was outstanding, as was Russel Crowe. Looks like dad has the jet in the driveway attaching the wings, so I need to eat, and go help. With any luck, nothing will blow up, and we won't burn the house down. Talk to you all later ! Have a great Friday guys!
07-18-2008, 02:53 PM
So glad your up and about, Rob, enjoy your weekend..
My son loved Wall-E and just HAD to get the video game right afer for his birthday! We are a Star Wars family as well!!
So funny, Im home in bed for the night - been really busy in the yard (behaving , though) and I just realized as I was looking through the movies to rent that I havent seen American Gangster. I was goint to rent it tonight!! Weird, huh?
Hope everyone has a good night
07-19-2008, 05:05 PM
So happy that your headache is GONE GONE GONE!!!! Thank Goodness for any small relief huh?
Glad you are feeling better!
Peace and Blessings
07-22-2008, 06:01 AM
Thinking about you...how did your meeting with your doctor yesterday go?
07-22-2008, 04:42 PM
Wondering how you are...wanting to believe the test results were great and you and your Dad are celebrating, flying jets, sailing the ocean or that your power is out again..but that isn't the reason is it..sigh.
I hope you are not alone, in your thoughts...
Missing you..head hugs,
07-22-2008, 07:54 PM
Hey, Rob. Hope you're doing OK. I had a myelogram (not sure if that's spelled right) many years ago. It entailed the same kind of procedure as a spinal tap (I might have mentioned this before.) The puncture in my spine didn't 'seal up' as it should have and I leaked spinal fluid for a few days. The headache was other-worldly. My son was young at the time (maybe 8 or 9) and he came into my bedroom and kneeled by the bed and looked me in the face and asked "Mommy, you're not going to die are you?" I must've looked pretty bad....I sure felt like I was going to die. But, I woke up one morning and the headache was GONE, GONE, GONE...just like yours!
My dad flew the B-24 Liberator (think I told you that, too) and they actually had one at the airshow here this past weekend. I would love to have seen that.
Your RC jet sounds amazing!
07-22-2008, 11:40 PM
I am glad your headache is gone and you are on the mend. It sounds like your doctors are on top of it. Your RC planes sound cool. My hubby plays with RC trucks and cars.
I am glad you are feeling better. Praise Him.
Sorry I haven't been on for a couple of days. I know you all want to know how my various test results came out. I can't talk about it today. I'm overwhelmed right now, and there is alot to talk about concerning my test results. I hope everyone can understand. I hope all is well with you guys. Thank you all for your kind words and support. I need to get a clear head and some sleep, so I'll talk to you guys later.
07-23-2008, 10:23 AM
I understand, we understand...we will be here for you, whenever and forever...head hugs...Oluwa
Even if I knew that tomorrow the world would go to pieces, I would still plant my apple tree....Martin Luther King Jr.
07-23-2008, 02:24 PM
Just know that we are here for you whenever you need us. Please take your time and come to us when you are ready.
Peace and Blessings
07-23-2008, 05:21 PM
Rob, just take all the time you need. We're not going anywhere.....
In the meantime, the best thoughts and prayers are coming your way.
07-23-2008, 09:30 PM
Sleep well Rob.
07-25-2008, 08:35 AM
Worry not about us, Rob.... We understand how things are, people are absent either like you their disease is active, or they are involved in their remission and pop back in... Some come back, some never do for various reasons..too hard to talk about the disease over and over for some or no longer need the forum. All reasons are right, because it is right for them.
07-26-2008, 12:36 PM
07-26-2008, 02:23 PM
How ya doing Robby? I been thinking about you. Was talking to HubbyMan about your planes. One of our sons is interested in building and flying.
Feel better soon.
07-31-2008, 02:12 PM
Hope you are doing okay?
Come up for air....
07-31-2008, 05:50 PM
Rob, just to let you know you're still on my mind....on lots of minds....in lots of prayers...
07-31-2008, 08:40 PM
I'm sorry you are going through so much. My thoughts are with you.