POZ Community Forums

Main Forums => Pre-HAART Long-Term Survivors => Topic started by: J.R.E. on May 21, 2014, 10:09:10 am

Title: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 21, 2014, 10:09:10 am
 8)

I had an appointment on Monday to discuss the labs that were taken last month. I usually see the nurse practitioner to talk over those results with.  I like her, and she is really sharp. Everything is well with the labs. Could be better but hey,..

Her background is psychology, and she has just written a paper, dealing with HIV and the brain, especially in  those of us living long term with HIV.

She asked me if I would be interested in having a battery of tests done, which may or may not include a brain scan.

Of course I said "Yes".   Seems lately, that I am getting even more forgetful at times, and it really bothers me, when I am having a conversation, and totally go blank in mid-sentence, and start fumbling and searching for words.

She understands completely what I am speaking of. 


So, She said she was gong to schedule an appointment, with Neuro/psychology, for me, which if I understood her completely consists of 5 or 6 different tests, and the possibility of a brain scan.


Long story short, The Neuro Doctor, just called me about an hour ago, and said they can get me in Thursday morning @ 8:30.  He also informed me that the appointment will last about 3 hours.

So, that's where I will be tomorrow, getting my head checked  :P I assured Ed that they will find nothing going on up  there !  HA-HA !  ::)


I will update tomorrow after the appointment, let you all know whats going on, and what took place.


Ray

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: mitch777 on May 21, 2014, 01:35:17 pm
8)



Of course I said "Yes".   Seems lately, that I am getting even more forgetful at times, and it really bothers me, when I am having a conversation, and totally go blank in mid-sentence, and start fumbling and searching for words.

She understands completely what I am speaking of. 


So, She said she was gong to schedule an appointment, with Neuro/psychology, for me, which if I understood her completely consists of 5 or 6 different tests, and the possibility of a brain scan.


Ray

Good luck tomorrow Ray. I have that same thing going on with my memory. Sometimes I end up speaking faster in hopes that I get it "all out" before the memory fails. lol.

Looking forward to hearing about your visit.

m.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 21, 2014, 08:27:20 pm
Sometimes I end up speaking faster in hopes that I get it "all out" before the memory fails. lol.

Looking forward to hearing about your visit.

m.

I hear ya !!

Thanks !

The only way I can describe things, is that sometimes I feel as though my brain is moving at lighting speed, and my mouth can't keep up when conversing ! :P


Or,....Maybe the mouth is moving faster then the thoughts,... .  ::)    But either way, loosing thought, even if it's for 5 seconds in mid-sentence is lousy, and it's happening more frequently.

I have excellent long term memory, but ask me where I ate lunch,  four hours after lunch, and sometimes I just can't remember.

Of course the brain kicks into overdrive when this happens, and I retrace the day leading up to lunch. And I can usually remember again in 10 or 15 seconds.


It's going to be an interesting visit at the doctors, tomorrow morning ! But I am finally glad that all this is going to be checked.


We'll see how it goes !




Thanks----Ray

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Jeff G on May 21, 2014, 08:33:44 pm
Best of luck Ray . I have almost identical problems with my memory and speech so I understand how disconserting it can be . Sometimes when Im talking I get lost in it and occasionally Im embarrassed . Please let us know how it went and how you are doing .     
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 21, 2014, 08:45:06 pm
Best of luck Ray . I have almost identical problems with my memory and speech so I understand how disconserting it can be .     

Thanks Jeff,

And it's not just the speech. Another thing I've noticed happening more frequently, is when I am typing a post here,  The thoughts are in my head, and I start typing...

After I look at the completed post, There are complete words sometimes missing from the sentence, to the point where the sentence makes no sense at all ! :o

There has been many times when I've attempted to post something, and it looks so screwed up, that I just say  "fuck it" and hit the browser back button.




Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 21, 2014, 08:48:05 pm


Time to go to bed, Got to get up at 6:00am to be down at the VA by 8:00 am. We'll be hitting the rush hour traffic in the morning !


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Jeff G on May 21, 2014, 08:50:05 pm
Thanks Jeff,

And it's not just the speech. Another thing I've noticed happening more frequently, is when I am typing a post here,  The thoughts are in my head, and I start typing...

After I look at the completed post, There are complete words sometimes missing from the sentence, to the point where the sentence makes no sense at all ! :o

There has been many times when I've attempted to post something, and it looks so screwed up, that I just say  "fuck it" and hit the browser back button.




Ray

Yes ! ... I proof read my post and still miss things and I have found when I am tired its even worse . I go back and read some of my post and I can't believe I didn't notice .

Its the same here ... missing words and jumbled sentences .
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on May 22, 2014, 06:42:10 am
Best of luck Ray.  Reading through all the issues everyone is having is comforting in a weird way.  I know I'm not alone with these issues.   ;D 

It's difficult to determine how much is normal aging and how much is abnormal aging with long term HIV.  I also find comfort when my brother who is only 2 years older than me has these issues.  We had an entire discussion last week and solidified some plans.  Come time to carry out the actions, he argued that we had made different plans.  Luckily, I had family members whom overheard the conversation and corrected him.  He wasn't convinced. :)

greg
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 22, 2014, 06:26:09 pm
 :o

As a result of my visit today, to Neuro / psychology @ Bay pines VA, all I can say is:


 OMG !!

I knew things were not right , but today, I realized just how  "not right " things are.

The tests today lasted approx 3 1/2 hours. All these cognitive/Memory... tests today,  just blew me away !!

The first 30 minutes or so, was going over family history, and going over my past 29 years of my personal health. "EVERYTHING" was discussed !

 3/4 's of the way through the tests, I was almost going to call Ed on on his cell phone,  and tell him," if I don't get out of here, check for a large glass vessel  with a brain in it marked ," A-B Normal"  :o  :P


It was an absolutely exhausting 3 and 1/2 hours, and after the completion, I said to Ed something I very rarely say, " I need to get to the bar and have a few shots."

I have a new perspective on things,...

I won't know the results until the Doctor calls me. But I have a feeling some further evaluation may be needed, along with possible medication.  Seriously !!


So that's it as far as I am going on this thread for now, until I get the results.

Between Pictures, Diagrams, brief stories being read, and sitting at a computer for some of the tests, I can honestly say I was embarrassed.

When one can't remember details of two different story's lasting 2 paragraphs long, something is terribly wrong., or look at six, geometric shapes, for ten seconds, and asked to draw what I had seen. UGH,... and come up with two out of the six, Talk about zoning out. Well,.. I zoned out today !! Then there were numbers,..UGH !

Some tests I did good on others,...  :o    I actually said to the doctor after the tests,

"  How did I manage to live to 62 years of age, and almost 29 years of living with HIV". I smiled and grinned, but was serious. His reply as something to the effect of :

Look, these were difficult tests, don't be so hard on yourself.

After we left, we had a good lunch, and as requested, we went to the bar and I had  4 shots of Southern Comfort, and 4 bottles of N/A beer.

Ed drove and we are now safely home !!

WHAT A DAY !!

A soon as I get results from the follow up consultation, I will let you know what's going on.

But, as of this moment I am fine, a little rattled, but I think I am rattled in a good and necessary way.


Ray

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Jeff G on May 22, 2014, 06:41:47 pm
Thanks for the update ... I do hope you get a good report .
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: mitch777 on May 22, 2014, 08:01:17 pm
Every single one of your posts here describe me as well. It's been going along that way for years now.

I don't know if you remember or not (lol), but I went through those tests not that long ago myself. In the end, I was deemed sane and "within the bell curve". Ha!

I seem to remember reading something here that explained that these tests honestly cannot detect much of what's going on with us. Wish I had the memory to even know where to search.  :o  Maybe a discussion about HAND?

...

Dinner interrupted me in mid typing and my train of thought left the station. Posted anyway.

Glad you had time to relax after the long day.  :)

 
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: AlanBama on May 26, 2014, 05:03:51 pm
I'm anxious to find out what the tests showed, Ray.   I had some neuro testing done last year, but they basically 'ignored' my concerns about my brain function (such as memory, forgetting words, forgetting names, etc).

Keep us posted.

HUGS, Alan
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: aztecan on May 28, 2014, 10:50:34 am
Hey Ray,

I am also anxious to hear the results. You are blazing a trail for all of us, I think.

HUGS,

Mark
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 28, 2014, 12:59:00 pm
 ::)

It will be a week tomorrow, since the tests.  I Haven't heard from the doctor yet, but will let you all know when I hear something.

I am going to have Ed go with me into the consultation, ( he will catch what I may miss),.. when that takes place, meanwhile,... I've been dealing with a very nasty cold, over the past 5 days. I think the worst of it is behind me right now, and I am starting to feel a lot better. I thought I was going to break a rib, from all this coughing, but it has finally cleared my lungs.

( two appointments at the VA within the week, ...I think I picked up a bug there)


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: mitch777 on May 28, 2014, 05:20:22 pm
I have had that same nasty cold now for 14 friggin' days and a backache for 6 weeks to go along with those coughing fits that sends me into a bracing tizzy every time and I'm tired of it! Hope yours winds down soon Ray. Sorry, needed to vent about yet another damn virus. lol.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on May 28, 2014, 10:49:13 pm
I have had that same nasty cold now for 14 friggin' days and a backache for 6 weeks to go along with those coughing fits that sends me into a bracing tizzy every time and I'm tired of it! Hope yours winds down soon Ray. Sorry, needed to vent about yet another damn virus. lol.
M...

Hope you get feeling better soon.  Saturday, and Sunday my throat was so raw I could barely speak. But, I've got to say that it's getting better, hour by hour.  I've been using the Mucinex " fast -max" severe congestion and cough, along with Chloraseptic spray, and an occasional Aleve 8 hour when needed.

Seems to be doing the job. Appetite has been great. No body aches, it was all in the chest and throat.


Take care----Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 05, 2014, 04:49:00 pm
 ::)


Ok ,....  I received the call today, for the follow up appointment. Appt. is scheduled for Thursday 6/12/14  @ 2:30 PM.

Tonight I am  going to relax and watch  Mel Brook's  " High Anxiety "

http://www.youtube.com/watch?v=RsJE8sYoe0E


Ray


Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on June 05, 2014, 05:49:01 pm
We will all be waiting , are you going to the Bar afterwards Ray?
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 05, 2014, 06:24:57 pm
are you going to the Bar afterwards Ray?

Maybe I should go to the bar prior to the appt.  ;)  All that's required is two shots of Southern Comfort, for medicinal purposes only  :P

I believe the word she used today on the phone for the appt next week was  "Feedback" on the results of all the tests were done.


I am not sure if they will allow Ed in the room with me, when I have or give this "Feedback" ,  but I am hoping they allow him in the room.


More to follow,....

 
Ray

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 05, 2014, 07:06:17 pm

But, seriously, I have been wondering a lot lately, what 18 years of untreated HIV infection has done to my brain. I might find that out next week.


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on June 06, 2014, 03:08:19 am
I think we're all awaiting your results as it'll be an indication of where we're at also.   ;D  I'd think they'd allow anyone in the consult as long as you agree.  You could always pull the "I won't remember the details" ploy.

wishing you well
greg
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 06, 2014, 11:43:50 am
   ;D  I'd think they'd allow anyone in the consult as long as you agree.  You could always pull the "I won't remember the details" ploy.

wishing you well
greg


Thanks,... That's exactly what I was going to say to them, as to why I want Ed in the room.  Because, I already know that most of what they tell me , I won't remember once I walk out of there.  :o



Ed has always sat right in the office with me at my primary and ID appointments. This goes back to 2003.

And, since he's the one that will be making final decisions for me when I can't, he should be present.



Ray



Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: BT65 on June 06, 2014, 07:50:22 pm
I'm going to definitely be looking for the results also, Ray.  I could so relate to you saying your mind rolls but your speech won't keep up.  Totally get that.

I'm wishing you luck.  I don't know why they wouldn't let Ed in the room, that wouldn't make sense.  I'm sure he could remember things you don't, that's how it would go with me. 

Hang in there!
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: aztecan on June 07, 2014, 01:05:56 am
Hey Ray,

I will also be awaiting the results. As others said, i believe all of us are living with this to some degree or other.

HUGS,

Mark
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on June 07, 2014, 10:56:01 am
Maybe I should go to the bar prior to the appt.  ;)  All that's required is two shots of Southern Comfort, for medicinal purposes only  :P

I believe the word she used today on the phone for the appt next week was  "Feedback" on the results of all the tests were done.


I am not sure if they will allow Ed in the room with me, when I have or give this "Feedback" ,  but I am hoping they allow him in the room.


More to follow,....

 


Ray

Ray I am confused is Ed your legal partner/ person to be contacted in case off emergency /listed as next off Kin ? if so he has a legal right and you can insist or  me is it because its a VA facility therefore military rules come into play?


Wondering as I like others can only see plus,s for Ed being there.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 07, 2014, 11:49:02 am

Ray

Ray I am confused is Ed your legal partner/ person to be contacted in case off emergency /listed as next off Kin ?


Yes, Ed is my legal partner. That is also part of my medical record. He is also listed as the person to contact in case of emergency.We're not legally married, but we have been together for 34 years this coming July.

Ed and Myself have already signed the  "Advanced Directives "  and redid this once again as I started receiving care through the VA. 

We also have all other legal documents filed ( Wills). The Advance Directives are in file at the VA, with each of us having our own copy. A lawyer has another copy.  He has all the authority to make all decisions, when I am not able.  The same applies to Ed.  If, something should happen to him.

I have a sister who is listed as next of kin. She won't be making any of these decisions.

I really don't see a problem with Ed being present on Thursday, Unless of course they are considering other tests to be performed, in which case I can understand them not wanting him in the room at that time,  But this appt, on Thursday is the compilation and discussion of those results.


The VA has been very good with having Ed in the room with me during discussions/examinations


Ray

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on June 09, 2014, 09:12:11 am
I can see why for the testing part off the processThe testers cut out all stimuli , but not for the feedback. Ed also has "legal" status so no barriers to his being in attendance.

Its a rare experience for a Brit, Ray , but I spent 3 half days at Las Vagas VA Hospital by the last day I was very fond off the place it had a sense off community that the ritzy US private Hospitals I have been in could not hope to generate.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 12, 2014, 09:34:43 am

I did have an appointment yesterday ( Wednesday) with my primary care doctor.  This was to discuss labs taken on 6/4/14.  Everything was fine except for my triglycerides, which were at 243. Liver, Kidney, thyroid, and everything else which was checked was all within range.

My ID doctor also requested labs at the same time on 6/4/14, ( I did not know this) which totally confused me, and had me running around making calls, because they were not to be drawn again until 8/25/14.

My % on these labs went down to 13 % T-cells @ 423



I need to get moving and start seriously exercising more, and continue to lose more weight.  She was very pleased though, that I dropped 5 pounds since the last visit.

She believes through diet and exercise, that I can get the triglycerides back down, but I need to get motivated.

I don't believe I had issues with the triglycerides before. This was the first time, but I will have to check my records.

She also informed me that she received communication from the neuro Dept, and has been asked to go ahead and schedule a brain scan  ( MRI) ,.. So,.. She proceeded with that yesterday, and I will wait for that call and appointment.

She also informed me she prefers an MRI over a cat scan.

In 5  hours, I will be back down in St. Pete, to discuss those results, from all the tests,   but right now, I am gong to take a nice long hot bath !  :)



Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on June 12, 2014, 09:53:34 am
Best of luck Ray.  My lipids are horrible if I don't take my statin.  All the exercise and correct diet in the world doesn't help mine.  Another damn pill every day for the rest of my life I guess.   ;)

Don't forget to quickly give us an update so we'll know how we're getting along.

greg
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Miss Philicia on June 12, 2014, 10:49:30 am
My HIV clinic doesn't fret about triglycerides until they go over 300.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 13, 2014, 04:20:55 pm
 ???

These are the results of the tests I took on 5/22/14.  Ed and I arrived @ 2:00 yesterday and by 2:20, the Doctor, and the woman who had administered the tests, and Ed and I were in the room discussing results.

I have nothing associated with HAND, ( in any degree)  or HAD. All the tests I took showed that I am  comparable to others my age/ education status group.  And the words used ,.. that the tests were all " Within Normal limits".

 He also went as far to say, that dementia and Alzheimer's disease is something that I don't have to worry about.

Of course, this totally surprised me as I thought I had done terribly on the tests , but this was not the case ! Go figure.

The meeting and discussion lasted about 30 minutes.

My "Executive Skills"( I Think that was the term he used) were not the best, along with multitasking.

I do have attention issues and slight anxiety, along with some minor depression, ( the depression thing I am not sure where that came from, as I don't believe I am depressed) the doctor did not believe that medication was necessary , but once again left it up to me, if I wanted to take it to the next level.


He, along with my primary had ordered the MRI, and my primary will get in touch with me, when those results become available. The appointment date has not been received yet, but I think that will happen within the next 2 weeks.

He also stated that the tests along with the MRI will give a baseline to work from in the future, and I will be seeing him again in one year, to 18 months.

He's more concerned at this point  of making sure that :

1:  The HIV be treated and the viral load be undetectable.

2: Blood pressure and cholesterol medication can play a role in ( and I will use his words)  can be responsible, for these  "Brain farts" That many of us have from time to time. ( I didn't know this)

3: Better Diet and Nutrition, and exercise may help, along with keeping physically and mentally active. ( this I already knew )

4: More reading

During the discussion, he also used the phrase " Self fulfilling prophecy", and that I may be creating my own cycle. ( and that could possibly be)

I know I am missing a whole lot here, but this was just a brief summary of yesterday.

And I don't feel too bad because when I asked Ed about the meeting, he couldn't remember it all either, as we were talking about it on the way home.  ::) All Ed said was "  You should be feeling great about these results"


I was expecting the worse, and the opposite was told to me ! :o



Ray


 



Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on June 13, 2014, 04:37:08 pm
Excellent in so many ways.
Good care too ,  Medical practice at its best.

I had no fears for you to be honest as I felt you would not write the posts you do.

But then superstition crept in and well I am dead chuffed you got the feedback you did,


m
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 13, 2014, 07:04:52 pm


An interesting 4 page article on medications that may cause memory issues :

 ( And I am on 2 of them ),.. Metoprolol, and Simvastatin.   Find out something new everyday! Now it makes sense what the Doctor was talking about yesterday, about BP meds and Cholesterol Meds.

http://www.aarp.org/health/brain-health/info-05-2013/drugs-that-may-cause-memory-loss.1.html


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on June 16, 2014, 07:32:08 am
Glad you're not having to deal with neurological issues.  And thanks for the link.  It has never been mentioned to me about my pravastatin potentially causing my cognitive issues.  According to the article, 75% experience adverse cognitive impairment?  Wow, that really should be listed and monitored.  I'm definitely going to discuss the issue with my doctor.

greg
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 22, 2014, 10:03:16 am
  It has never been mentioned to me about my pravastatin potentially causing my cognitive issues.  According to the article, 75% experience adverse cognitive impairment?  Wow, that really should be listed and monitored.  I'm definitely going to discuss the issue with my doctor.

greg


Yes, I gonna speak with my my Doctor about the possibility or changing out the Metoprolol, and Simvastatin. I can't do Lisinopril, because of the cough I got I from that, and from what I read anything that ends with lol, has the possibility of causing memory issues as well  LOL  :P     !


Also,... I received my appointment card in the mail yesterday.  I have the MRI, scheduled for July 5th
( SAT) @ 10:30 in the morning at the VA hospital.


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: AlanBama on June 25, 2014, 03:30:29 pm
I think it's great news Ray!  I was concerned, but am glad you got this report.   That is interesting, about the meds as the possible culprit....

I stopped my cholesterol med (lipitor) because it was giving me muscular aches.  My numbers are not really bad anyway, so I'd rather have one less medication.

I need to look into my BP meds, as a possible source of the mental 'fogginess' that I have!  I've been on the same things for quite awhile.

HUGS, and hope you guys are enjoying your retirement and having a great summer!
Alan   :-*
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: BT65 on June 26, 2014, 06:05:30 am

Yes, I gonna speak with my my Doctor about the possibility or changing out the Metoprolol, and Simvastatin. I can't do Lisinopril, because of the cough I got I from that, and from what I read anything that ends with lol, has the possibility of causing memory issues as well  LOL  :P     !


Also,... I received my appointment card in the mail yesterday.  I have the MRI, scheduled for July 5th
( SAT) @ 10:30 in the morning at the VA hospital.


Ray


Very interesting, and I'm on the Metoprolol.  After this move, I'm going to have to talk to my doctor to see if there's something else that can be substituted.  It's used for a heart issue, not BP.  In fact, my BP is unusually low.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on June 27, 2014, 05:13:38 am
I think it's great news Ray!  I was concerned, but am glad you got this report.   That is interesting, about the meds as the possible culprit....

I stopped my cholesterol med (lipitor) because it was giving me muscular aches.  My numbers are not really bad anyway, so I'd rather have one less medication.

I need to look into my BP meds, as a possible source of the mental 'fogginess' that I have!  I've been on the same things for quite awhile.

HUGS, and hope you guys are enjoying your retirement and having a great summer!
Alan   :-*

I tried the Lipitor for almost a year.  I finally quit taking against my dr's advice.  I've heard positive things about it, but it was horrid for me.  I won't bore anyone with the graphic details I experienced but it was akin to the monotherapy drugs I first took.   ;D   I reluctantly agreed to Pravastation and have had very few issues with it with optimal results. 

It's time for me to have a discussion about the Metropolol also.  I was on it for quite some time due to a couple of heart attacks.  Since I made so many med changes at the same time, I'm not sure now which one potentially caused that issues I had.  Then again, since they've mostly faded, I probably should just stay the course.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Jeff G on June 27, 2014, 07:57:32 pm
Hi Ray ... I have a new appreciation of what you went through to test for the cognitive part of the exam . I had my exam today and was there from 8 to 1 pm ... parts of it were very frustrating but I think I did well and fear I wouldn't know the difference LOL .
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 08:37:18 pm
Hi Ray ... I have a new appreciation of what you went through to test for the cognitive part of the exam . I had my exam today and was there from 8 to 1 pm ... parts of it were very frustrating but I think I did well and fear I wouldn't know the difference LOL .

Good luck Jeff, I am about to post the full report on my evalution

Ray  8)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 08:56:36 pm
I went to the VA today, To get the full report of my evaluation, for the neuro, cognitve tests that were done on May 22nd ! This is really where it gets down to the nitty, griity.

I've been in this site now for over 10 years.  Anyone who has read my posts,  knows that I am as honest as possible, and try to be detailed,  where writing about things that have happened to me in the past 29 years of my life , living with HIV and AIDS.

When it comes to surgery, I won't hold back.  I will share all the details, some think it's gory, but I've been sliced, diced, frozen, stitched, stapled, on so many occasions, that this is just a part of my life that I live with, and for the most part I am comfortable with it. It's part of life, and part of getting older.

 When I share this info, this is mainly to help educate or inform those that may be going through similar situations. Whether, it's hernia surgery,  Getting warts removed from your anus,   getting skin cancer, dealing with Shingles, ...

So, I am now going to share with you all this 10 page report, that I received today. It's quite detailed.

I edited out my last name,  and the name of the doctor, examinor,  and the referring nurse, for privacy reasons.

I am not sure if i will get all the pages up today, but I will try to out a few pages up each day.

 I had to scan these pages to photobucket, so you will have to zoom in.


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro3_zps0e8b08ad.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 09:14:39 pm

(http://i1047.photobucket.com/albums/b473/exrrje/Neuro4_zps8bb34307.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 09:25:47 pm


THIS DESCRIBES SOME THE TESTS THAT WERE DONE :

(http://i1047.photobucket.com/albums/b473/exrrje/Neuro5_zpscf618e06.jpg)


Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 09:37:05 pm
(http://i1047.photobucket.com/albums/b473/exrrje/Neuro6_zps38b45c7d.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 09:47:27 pm

I think my brain is functioning quite well with editing uploading and downloading  ;D


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro7_zps0b2b37a3.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 09:57:47 pm
I'm on a roll,....  :P



(http://i1047.photobucket.com/albums/b473/exrrje/Neuro8_zpsa45d349a.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 10:07:39 pm


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro9_zps2882edfd.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 10:14:40 pm

(http://i1047.photobucket.com/albums/b473/exrrje/Neuro10_zpsf8c87472.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 10:24:14 pm

FEEDBACK SESSION :


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro1_zps985de3ae.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 27, 2014, 10:30:38 pm
FOLLOW UP CONT:

(http://i1047.photobucket.com/albums/b473/exrrje/Neuro2_zps8dff0aa1.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 28, 2014, 12:33:13 am


Sorry for the docs that are not in order ! I will re - due pages 4,5,and 10
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 28, 2014, 12:36:59 am
Description of tests:


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro4_zpsd30f8c43.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 28, 2014, 12:39:04 am


(http://i1047.photobucket.com/albums/b473/exrrje/neuro5_zps0bea310c.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 28, 2014, 12:41:12 am


(http://i1047.photobucket.com/albums/b473/exrrje/Neuro10_zps3aadd1a6.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 28, 2014, 01:51:14 am

Page 2:

(http://i1047.photobucket.com/albums/b473/exrrje/Neuro2_zps3922350c.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on June 30, 2014, 05:59:53 am
Ray for your info pages 2,3,8 and 10 are not coming up , not sure if the next page contains the one that did not show.


How are you after receiving such a detailed report?
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 30, 2014, 11:44:04 am
Hey Micheal,.


Yes, I messed up a little when posting.  PAGES 3,6,7,8,9,1 are on page one of this thread, in that order.

Pages 4,5,10,2, are on page 2 of this thread, in that order. So, one will have to bounce back and forth between the thread pages if you want to read them in
numerical  order.

Ray for your info pages 2,3,8 and 10 are not coming up , not sure if the next page contains the one that did not show.


How are you after receiving such a detailed report?

I went to the VA to the  "Release of information" and they gladly printed them out for me.. There is no problem getting this info. I can get my entire history on CD if I want to.


Ray :)

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on June 30, 2014, 04:49:19 pm


How are you after receiving such a detailed report?

I'm OK,... I knew there was something going on.  I just didn't know the degree, of what was going on.

The report is quite clear.  I go for the brain MRI, this coming Saturday, And they usually mail me the results of that, but I will also go to the VA in a few weeks to get that full report. I can get the imaging results on CD, but I believe that takes a month or so after a request, for that visual.


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: Theyer on July 01, 2014, 06:42:37 pm
Thanks Ray , I will be looking out for your Postings, in the meantime I think I understand the OK you said you are feeling , is it related to my oft mumbled Same OH Same Oh.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 05, 2014, 07:46:08 am

We're up and moving about !  We should be leaving in about 1 hour to get to St Petersburg for the MRI.    Lets Hope the head doesn't cave in " lol  ;D


Ray  ::)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on July 05, 2014, 08:05:46 am
best wishes Ray.  Let's just hope they don't find an empty void.   ;D
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 05, 2014, 03:41:42 pm
best wishes Ray.  Let's just hope they don't find an empty void.   ;D

Something else completed,....


 ;D Well....   My head didn't cave in !  :)  Total time from when they called me from the waiting room, and  returned, back to the waiting room, was 46 minutes.

I had to answer all the typical questions on the form, then they made sure there was no metal on me,
( or in me). The last time I had a cervical spine MRI done, they had me remove all my clothes and gave me a hospital gown. This time all my clothes remained on, ( only removed belt, Ed had all my other personal stuff already).

The first scan lasted about 20-25 minutes ( listened to easy rock through the headphones  :P ) but still the noise was loud.

Then they brought me out of the machine, ( still laying down),  and injected me with the high contrast solution,  waited an additional 7 minutes, and then placed  me back in the MRI machine for about 5-7 more minutes of scan.


It went very smoothly, I was informed that the Doctor should have the results by Tuesday.


After that, we went out for lunch, and then to our local watering hole for a couple of  Coors-NA, and to catch up with a few of our friends.



Ray 8)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 05, 2014, 03:54:21 pm


Oh yes, and I am not sure what was in that injection, But it caused me to urinate quite a lot, for the first two hours after the MRI.

I think it's all back to normal now !

Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on July 06, 2014, 04:40:22 pm
Drinking too many N/A's after it could cause excessive pissing.   :) 

Of all the shit I've experienced in this journey, this procedure F'd with me the most. 

I never even knew I had that bad of a case of fear of tight places.  I felt ridiculous at over 40 years of age and throwing a fit.  I was hyperventilating and so anxious that I made them stop it and I was only half way in.  I ended up finally doing it but only with a damp cloth over my face and country music blaring through the headphones. 

Let us know what he tells ya.
hope you guys had a great holiday

greg
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 06, 2014, 07:08:40 pm
Drinking too many N/A's after it could cause excessive pissing.   :) 

Of all the shit I've experienced in this journey, this procedure F'd with me the most. 

greg

A little Claustrophobia, hey Greg ?  I can understand how some may have have problems. I think I have had a total of 3 of these done in my life, and never had any issues.  If it wasn't for the noise, I probably could have taken a short nap !  :D


Ray  8)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on July 06, 2014, 07:16:52 pm
I couldn't recall the word...thanks.  and I'm too lazy to google these days.  I had to have them regularly when I had the meningitis that wacked my brain beyond belief.  I eventually tolerated it but I much more preferred the daily spinal taps.  Not kidding, I'd trade an MRI for 7 taps anyday.

They must have put me through the children's MRI machine.  I was shouldered scrunched and couldn't have scratched my ass if I had to.  I'd be ok if they put me in the one my previous neighbor fit into

BTW: down to one crutch which means I can now carry a glass of wine
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 06, 2014, 09:18:09 pm
I couldn't recall the word...thanks.  and I'm too lazy to google these days. 

I knew the word, but I had to google it anyway, cause I didn't know how to spell it !  ;D  :P


Ray  8)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: guitargal on July 08, 2014, 07:03:38 pm
thanks for sharing the reports!.
no "old timers"  and "mild" is what jumps out at me.. so that is good..
best to you

Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: AlanBama on July 16, 2014, 11:38:36 am
any results from the MRI Ray?

Hope you are doing well!   HUGS
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on July 16, 2014, 12:28:11 pm
any results from the MRI Ray?

Hope you are doing well!   HUGS

Yep, I'm doing OK ! Thanks !  Haven't heard anything yet, no letters or calls, so maybe that's a good
thing  :)

I may go down to release of information in a week or two, and see if there are any reports.  Been checking the online medical history and see nothing, as of yet on there.


Ray  8)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on July 16, 2014, 05:21:52 pm
Usually, no quick news is good news.  Had they found something blatantly bad, they would have certainly have contacted you.  Hope that's the case.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on August 04, 2014, 03:23:41 pm
UPDATE:

My curiosity, was getting the better of me, so I went down to the VA, Release of information, to get the report on the brain scan i had on July 5th, 14.

These are the results. I will have to do some googling, There are some things here, that I don't understand !   :P

PAGE 1 OF 3
(http://i1047.photobucket.com/albums/b473/exrrje/mri1_zps475d8761.jpg)



PAGE 2 OF 3


(http://i1047.photobucket.com/albums/b473/exrrje/mri2_zps64588a63.jpg)




PAGE 3 0F 3:


(http://i1047.photobucket.com/albums/b473/exrrje/mri3_zps34bd63f1.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: AlanBama on August 12, 2014, 04:05:01 pm
let us know if you're able to decipher any of it, Ray.

HUGS, Alan
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on August 13, 2014, 02:16:24 pm
let us know if you're able to decipher any of it, Ray.

HUGS, Alan

 :D Yes I will !  Thanks ! I already have some questions typed up for my ID doctor, when I see him in September. ( don't know if he will be ale to answer them either, but will find out)  Meantime,... all is gong well !


Ray
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on December 19, 2014, 06:03:49 pm
UPDATE FROM 9/22/14 ( NEURO) AND 12/10/14  LABS

Trying to keep up with my progress notes.  These notes were from September 22nd,2014, after a visit with the neurologist.  This visit was to discuss, Neuropathy , and numbness in my feet and hands,   I had this report printed out on December 5th,2014.

Haven't had any further increase in numbness or discomfort, after this visit.  Received the results of my latest labs yesterday, from December 10th.  Tcells are @ 350,( down from 402 in August),--- % went up from 11% to 13%. Still haven't received the viral load yet.

Nothing else much going on. Feeling pretty good, taking all into consideration.

(http://i1047.photobucket.com/albums/b473/exrrje/NeuroVisit_zpsdf4652a8.jpg)
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: wolfter on December 24, 2014, 09:52:09 am
What does the summary indicate?  I'm not able to clearly see it.  Hopefully it's not too terrible.  Wishing you both a great holiday.
Title: Re: Neuro/ psychology APPT, set up for tomorrow....
Post by: J.R.E. on December 25, 2014, 11:30:25 am
What does the summary indicate?  I'm not able to clearly see it.  Hopefully it's not too terrible.  Wishing you both a great holiday.


Hi Greg,..


I actually thought the report was vague. There were several office tests performed. But honestly, I wasn't expecting that much. At this time I will report any changes, to my Primary care or to my ID doctor, as I have those appointments.


There haven't been any noticeable changes.  I do not have any real leg or foot pain going on. There is no need for any kind of additional medication at this time.  I am still able to walk, jog, exercise with no issues. The only thing I experience is numbness, and slight tingling/ electric shock type feeling ( As though my feet are asleep. ) I also have this feeling in my hands.


It's just a wait and see thing right now. If the degree of numbness/ tingling/ Electric shock feeling,.. increase to the point where I can't perform my everyday tasks, then it will be brought to their attention.


But so far, I have no problem.



Merry Christmas----Ray