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**journeyman** · 09-23-2012, 07:09 PM

Some people and their advice !!!

Some people and their advice!
If I stayed off my ladder then I'd have to hang up my chainsaw.

Been in bed most of the day. The past few days my confusion has been increasing. I have managed to tick off all of my family by my ill-intended remarks and insensitivity. I finally told them, my Father, my brother of four years younger and five years younger sister. I decided that since I just turned 63 I was going to stop being their "mother" and running to them to put emotional band-aides on their Boo-boos.

I have taken care of much more in the past two months than I care to. I need to take care of me and my Caretaker, my loving wife and that they needed to do somethings on their own. Well...that set off a bomb.

Then I woke up with ON. I thought my by the end of church my eyeball was going to blow out. I wanted to just take it out and put it in a glass of water and let it do its own thing all by itself. It was pretty painful so I resulted to my eye drops and pirate patch and just stayed in bed.

It's evening now and at least the pressure has let up. Probably too much partying yesterday. We celebrated my son-in-law's and my sixty third b'days. I know that anything my son-in-law does turns out big. (My daughter's wedding for example was supposed around two hundred and ended up being closer to three hundred. He would say, "Oh, hey I'm getting married come over for some fun.")

So the party yesterday wasn't that big but we expected seven and it was more like twenty. We ended up being blessed with more food than we planned. Our refridgerator now looks like an aluminum wall when you open the door. It was a lot of fun and I was the only one who ended up in the pool. Intended...sort of. They threatened and I went on by own.

It will probably be the last time this year. Its down to 80 degrees in the pool.

I hope you all have a great week and will be praying for some resolve in all of your symptoms.

If we all stayed off of ladders and quit using our chainsaws what fun would life be.
Dave Tampa, Florida Autumnal Equinox - YAY !!!
"Journeyman"

**gomer** · 09-24-2012, 08:05 AM

My Oh My J-man Dave............

If ya stay OFF ladders, ya can't FALL off them! I tend to fall on level ground/surfaces. One fall on the front porch, another in my bedroom and lastly in the driveway next to my marshmallow, were ALL on level surfaces, not even a throw rug to throw me, landed me in surgery or admitted for a few days with nurse Ratchet and her trainees.

Speakin of ADvice.... Someone suggested I not do anything 2' or more off the ground! That would eliminate even my power chair!

I have been lucky I guess, no ice-picks in my head and no eye ball wanting to burst this year.

I go to my hoof doc this afternoon, but problem has improved since I made the apt, go figger.

Last Friday had my apt w/sleep clinic Dr. and told I NEED a sleep study., (was sent there by my MS Dr.) Now I am waiting for the date to be set for the study. I asked if it could be done there (in Ann Arbor) she said NO! They do sleep studies there but she wants me under full-time human observation in case I have a problem. So that means a longer haul, twice as far away for the study.
BTW; WHAT! me have a PROBLEM?

Also last Friday I got my testing done & labs drawn in prep for surgery in a few weeks. I also turned in my paper work at the docs office. I can not show my face in there w/o being extra noticed due to the fiasco that ensued when they taught me to self cath & nearly landed in ER. (I refused of course).

Now J-man Dav.... turn your ON OFF! (and leave it off!)

Where is everyone?

Gomer Sir Falls-a-lot

**journeyman** · 09-24-2012, 10:21 AM

Re-post from "Gen. Quest.

This is long but it is info that I just received and thought out people here might benefit from it so I am re-posting.

Thanks for showing interest in my dx/limbo.
I had the four hour neuro/cog test. Haven't received my results but should be coming in this week. Takes a month to tabulate?

I told them that I was dx.d in 1980 with temporal lobe epilepsy with petit mal seizures. I was placed on Dilantin first. Then they also found out that I had Seasonal Affective Disorder, (S.A.D.) or seasonal bipolar for short. I'm manic in the summer and depressed in the winter. I moved from Florida to Vermont. My brain could not take being in the dark that long - turned into a mushroom.)

Turns out that Temporal lobe epilepsy

So they put me on an anti-depressant and switched the Dilantin to Neurontin. They told me that it worked on the seizures and was a booster in effect to the anti-depressant.
I was placed on another medication that boosts the anti-depressant effect. All-in-all I am on 2,400 mg. of anti-seizure medications. I felt that that covered me for the epileptic problem.

I let the Neuros know and they have cancelled all my future testing and will see me in January.

Epilepsy does not answer the entire question. I have the lesions that resemble MS. And I have a larger lesion located on the Temporal and Frontal lobe boarder. They think that resulted from a silent stroke and is permanent.

Since then I have researched Temporal Lobe Epilepsy and have come to the same conclusions as my neuros. I do have all the symptoms but the symptoms of Temporal Lobe E. do fit neatly with the combined set of symptoms that I exhibit.

I do not know what they will do with this information but to me it sure looks conclusive. The felt that I was a "tossed-salad" of dx.s

This does not make me feel any better especially I feel more Limbo-ish until Jan. Perhaps it will make a different medication adjustment that will in the end make me feel better.

I am sorry this is so long but a lot of the information is new to me too. But I wanted to share it in case it helps some-one else.

Thanks for your inquiry because it helped me to better understand myself and my dx that I might have missed had I not received your post.

I am going to post this in Area 51 which is my usual hang-out to perhaps help someone else.

Dave Tampa, Florida
"Journeyman"

**gomer** · 09-24-2012, 06:53 PM

I read your post J-man over in Gen Q&A........

One thing left me wondering, did they ever do a lumbar puncture and EVPs? OF all the testing I seem to recall from your posting, I don't remember either of these being done. That puzzles me, they should at least help with a differential Dx.

IF you were found positive for O-bands or very elevated MBP, either one would help confirm MS in addition to anything else in your cranial buffet. A finding of elevated MBP is indicative of the body trying to repair MS lesions/ damage. Also an abnormal EVP would show nerve damage not usually associated with epilepsy.

Gomer Sir Falls-a-lot (my season has begun)

**journeyman** · 09-25-2012, 09:25 AM

Yeah Gomer. Sorry for the omission.

All the tests were positive were for MS especially the vis. evok. but the radioscopic guided tap and pressures were normal.

Yet the lesions, symptoms, numbness and vis, evok. and sudden partial blindness led them to believe they had enough to dx me with RRMS. I found out my dx when my insurance company jumped on me ok-ing all the tests. A week later My Primary and Neuro came to me in my hospital room and delivered the dx. ???

I was then transferred to the MS specialist Neuro who also dx'd me despite the spinal results. They MRI'd my spine and found no lesions there either. But - as wierd as I am when the do the knee reflex I have to warn them not to stand in front of the other leg. You tap one and get and over-reaction and both legs go off at the same time ? It doesn't matter which one they tap both go off. So they deduced that there was some kind of electrical cross-over and potentiation of the reflex. ie. a low spinal, invisible leasion.

Yup, I got stuck there. I write so much here and have trouble keeping it simple because everything is so complex. Only yesterday I learned that two of the symptoms of temporal lobe epilepsy are hypergraphia, (writing a lot.) and pedantisim. ( getting on a soap box ). Deb Amened that.

Dave. Nice and dry - you need to drop down now for a visit.

**thewildrose** · 09-25-2012, 04:26 PM

Hi guys!

I've been through the ringer the last several weeks

My sx have increased quite a bit - the worst being unable to speak to communicate half of the time. Sometimes can get out sentences, but most of the time, two or three words, or complete gibberish - and then I don't even remember that I was talking. PCP wants me to get power of attorney for dh and our daughter because I've screwed up our affairs so bad.

My legs are really bad, despite physical therapy. On PT days, I can't even walk - legs collapse within 2 hrs. They've suggested a wheelchair and had the talk with me 'You know, this is only going to get worse.' Still walking circles fairly regularly.

My neuro has had his schedule locked since May - I almost lost my disability and insurance til PCP stepped in and gave them what they needed. She wants me to find another neuro - duh. The neuro at Hopkins is still doing tests to see if I have, or also have Sjogren's disease, since I was dx from my LP but no lesions. I can't really plan on him taking over my neuro care til he dx me. I think I'd have to see a rheum for Sjogren's. I can't believe that would do all this ...?

Top it all off with dh suddently having weakness and pain in both arms daily, and both legs on and off. He has had scleroderma for over 20 years - they say it's not that. PCP thinks he could have MS also. I'm scared to death he has ALS

Hey J-man, I hope you get things figured out soon! and sweet dreams, Gomer

**gomer** · 09-25-2012, 06:46 PM

Sweet Dreams?

Are you suggesting I take less insulin or eat something sweet before bed? Not tonite as I have a diabetes center apt in the morn.

OR Are you speaking of when I go into the horsepita for a little surgery?

OR are you speaking about the to be set sleep study?

MY dreams are seldom "sweet", but they are in technicolor!

Thanxs for the suggestion, who knows it might help?

Gomer Sir Falls-a-lot

**thewildrose** · 09-26-2012, 05:48 AM

I'm sorry Gomer - I meant for the study

**unsureofanything** · 09-26-2012, 08:10 PM

this week in limbo land

hi everyone

how are you?

i'm still unsure of everything but my week has been interesting, got somewhere but now playing waiting game, and oh how fun is that (not, lol). trying to have humour about it and don't always feel like it.

uhm ok so i thought i was going to have an MRI later in the year and i got super massively awesomely lucky, apparently i was on a cancellation list and 5 days after my initial neuro appt i was in the tunnel. they gave me a print out which i was impressed with, going to take it to the GP cos I'm seeing her before the follow up with the neuro which is still ages away.

but i just had to look at the MRIs myself, didn't i? and i saw what looked a lot like dawson fingers around my ventricles, plus what looks a lot like lesions in lots of places in my brain (including one in broca's which might explain why i find it easier to write than talk..gabba gabba words don't come out right) and what looks a lot like lesions on my posterior lumbar 4 and 5 which explains my burning feet and possibly a couple of old ones on a few thoracic nerves which makes me wonder if i even have a milk problem in the first place.

so i am thinking it's MS and not lupus (thank goodness, i was worried i had what my aunty died of) and if the neuro says that and maybe my milk thing is just more MS then the first thing I'll be doing after I see him is eat a huge cheesecake or a plate of nachos or something. i could really use comfort food and there ain't much of that without dairy.

but my carer who is the nicest person on the planet is taking on a lot at the moment, as i'm pretty much stuck at home. so i would really like to figure out how to get back on my feet again. i appreciate the help everyone's giving me but i'm rather annoyed at not feeling very independent right now. so thanks for listening and if you know some secrets on how to get moving that would be great, i've got fatigue and gold flashes as well as the foot thing...and headaches now but that might be rebound from tramal. ???

if i can help let me know thanks xxxxx these forums are great. hope your week has been symptom free!

**alishape** · 09-27-2012, 06:57 AM

I swear, I think mixing up words is the WORST!!! It makes me feel like such a retard. Then every one around me acts like it's no big deal. I guess if it was happening to someone I love I wouldn't think it was so bad either, but still. Of course I don't want to be in a wheel chair...man, I am fixing to shift out of this negative mode of thinking right now.

I was thinking everyone here seems to have a much clearer picture of what is going on inside their heads than I do. I mean I went to the neuro he showed me pictures on a computer monitor. There were spots on my brain and my spine. I don't know anything about o-bands even though I had a spinal tap

Hey Gomer, what season has begun?

Journeyman, your wife can put up with a lot but I think she'd draw the line at chainsaws.

@unsure - What's a milk thing? It seems like it makes you sick, but if so won't it make you sick no matter what the cause?

@wildrose - What do you mean about walking around in circles?

Gosh, it seems i have a lot of questions this morning, lol!

**journeyman** · 09-27-2012, 10:09 AM

Neuro follow-up ???

Re-printed from "Gen. Quest."

Received a call from Neuro's office for the reason of cancelling all of the epilepsy testing etc.

Vary vague but said they did not consider it a major factor anymore and that I was on medication for it. (Silence followed)

Insisted on continuing with upcoming appt. instead of cancelling it so that we can talk and I can get out of limbo.
Dave Tampa, Florida
"journeyman"

**journeyman** · 09-27-2012, 12:46 PM

This is the definition of confusion.

OK. I'm really going to open up here and leave myself ready for the "Gomer" comments.

This is so embarrassing (but you know me and my attention seeking behaviors?)

They may not even let this through. But for those people who want to know what it means to be confused with MS and have never been there, this is what it is like.

This morning I went out to work in the raised garden. On my way out I saw four orchids that I bought a week ago and badly needed to be re-potted. (ADHD) strkes here. So I spent an hour re-potting them.

Then I got all the tools out to work in the garden. I was kneeling down to put some screws in and caught a visual flash of the color red. I looked down and there I was outside in my raised garden - there in my peppermint stick boxers!

I ducked down and looked around to see if anybody was out in their yard. So far so good! I casually picked up my lemonade glass and sauntered back into the house as if there was nothing wrong. I looked in the full-length mirror at myself and said, "These will never pass for summer shorts if anybody saw me. Good thing the Policeman across the street had gone to work or there would be an 'Indecent Exposure' charge on my sterile police record."

I so cannot wait for the comments on this one !

That's confusion !
Dave Tampa, Florida
"Journeyman"

**journeyman** · 09-27-2012, 03:46 PM

A Post for my wife.

I had a rude awakening last night. I knew it was going on but did not put it together.

My wife and caretaker gets up at 4am. works on school work for her classes for the day. Goes to work at 6:30 am. Teaches all day until 3:30 pm, Works on lesson plans and oversees the Tutoring program at her school. Comes home, (I fix three out of seven dinners) She does it the rest of time. We usually eat at 8pm. Calls and talks to parents of her problem children in class. Then she grades papers and enters grades. At 10pm she starts getting ready for bed. In bed by 11pm.

Tonight she has to meet with all the parents. Parent/Teacher's night. 3:30 pm. until 8pm. Then she has another meeting with all the people who are involved with the upcoming Tutorial program. She will be home around 9:30pm.

She does all this to make ends meet and takes care of me.

What a workhorse and and a women. I love her more than she will ever know. (Two years to her retirement).

Definition of dedication and love for me.
Dave Tampa, Florida
"Journeyman"

**gomer** · 09-28-2012, 01:23 AM

J-man.... YOU have done far worse than go outside with colorful clothing on, like in a stupor and B-day suit.

I can just imagine you in peppermint stick boxers!

R U gonna post a photo for us?

Gomer Sir Falls-a-lot (my SEASON of course)

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