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Backsliding in recovery - Page 17

post #481 of 1017
Thread Starter 
Our top story today:

I am now told by the 'doctor in training', who has managed my case in Boston under the supervision of now 2 different MD's, that the latest round of MRI's do not show that I have MS, that the lesions neurologists showed me on MRI's in 1992 have disappeared, and that I had a one time incident of transversal myelitis.:: :
post #482 of 1017
Thread Starter 
Yes, folks, the year was 1992, and my whole left side became numb and went to sleep for a while. After an MRI of head and spine, a spinal tap, and evoked potential testing, the diagnosis was MS. I was shown some of the MRI pictures and a pen was used to circle 8 lesions where there was no longer myelin. I was given 'The Talk' about what to expect, which in my case of relapsing-remitting MS, I would be good for quite some time if I took care of myself, and I decided that year to do things I wanted to do rather than put them off.

I learned to ski.

Some years later, another MRI was done, confirming that things were stable. This was good news. I was getting a lot of exercise and fresh air and I ate right.

When I got to Vermont, I saw a new neurologist who wanted to do a series of tests. I had an MRI in 2004 and the evoked potential tests (he said the lumbar puncture was not necessary since it was positive in 1992). This doctor has an excellent reputation in the MS community and teaches in Boston as well as lectures nationally. He was doing more teaching and running clinical trials in 2005 and I was handed off to his associate. I've been with him ever since.

I repeated the MRI and another EP test in 2005. In 2006, he seemed to think I would benefit from some type of preventative therapy. I was offered a slot in a clinical trial but backed out since I was working and I couldn't risk the side effects at the time. After I quit work in Oct. 06, I was setting up to start the trial in February, but I broke my leg, which got me postponed indefinitely because of the issues we've been dealing with in this thread.

Now, this new guy tells me that 2 different doctors in 2 different states running identical tests BOTH got the wrong diagnosis. Transverse myelitis hits and runs. I would've had an episode then got better.

When I brought up questions, he said, "At least you don't have to worry about MS now." I said, "I WASN'T." I've had years to deal with it and was dealing really well. NOW I'M WORRIED!!!!

What is the reason behind all the MS symptoms if it isn't MS? Heat intolerance, phantom itching, bladder and bowel issues, fatigue, muscle fatigue, balance issues and the elusive Morton's Neuroma that doesn't respond to surgery (twice) that was finally diagnosed as 'a symptom of MS'...........all of this is from WHAT??? If not MS, what is it now????:::

His answer? "Don't worry about it.":::

His answer on the headache question was to bounce from 40-50 mg of Nortriptyline over the next month, settle on 50 for a while, then work my way up to 100mg a day. I told him that I have blurry vision, memory problems, irritability, chills, nightmares and it isn't taking the headache completely away, and he said, "Well, you've tried everything else and this seems to do some good."

I can't argue that, but are the side effects worth it? Maybe. He wants a follow up in.....drumroll.... SIX MONTHS. Failing a good response to this drug, I will be referred to a headache specialist, 'who is very busy and hard to get an appointment with, but you definitely have headache issues'.

He left the room to consult his mentor, like he did the first time I saw him, and was back in minutes with a different doctor than the one I saw last time. He didn't seem too interested in what I had to say about past doctors being wrong and said that issue has nothing to do with anything now. My MRI was clean except for a lesion on my spine, and he didn't want to elaborate on it.

I told him about them finding 8 lesions in 1992, and he said, 'They probably weren't lesions. ::

As of now, I'm pissed and more worried than I was before. Not only was the one thing I was sure of in question, but I still have no answers to the headaches and the gastro issues, which are making life hard right now. Was I duped for 16 years? How could the others be so wrong, consistently?

I called my neurologist in my hometown and made an appointment next week. I have copies of past MRI's and the latest one and I want a comparative analysis done. I'll submit to another lumbar puncture (again) if that helps confirm or deny MS.

I called and left a message for my nurse case manager and wrote her an email. We're going to have words.:
post #483 of 1017
Thread Starter 
More goodies.....

I went to imaging before my appointment and asked to talk to someone about the MRI table shaking. The receptionist called someone and told me to wait.

After about 10 minutes, a guy in a suit and some tall student in a tie (no coat) came out and we sat down in the hall (not the waiting area). He had me explain the table shaking and the heat from it, then said,

"Our imaging machines are not like anywhere else. We have had researchers modify them to do more detailed images." :

He went on to explain that they get 25 additional images when the machine is in that 'shaking' cycle, and blah blah....he throws out language I don't understand.....and that it is normal and they should have the technicians tell you before it starts.

I then tell him that I couldn't HEAR the technician and we discuss that whole thing. He says he will bring this up at the next staff meeting. Mmmmkay.

I don't know how I feel about researchers tinkering with machines like that. I know progress is made by such things, but also mistakes are common also. That's why it's called RESEARCH. Having been in on the process for microchip engineering for years, I know that you go through a lot of changes before hitting on the right combination of things that works the way you want it to. Sometimes things Blow Up when pushed to limits.......literally.

Heat and movement from things that are normally stable and cool seems like a precursor to Blowing Up. : It could be just the way I think. I didn't like it at the time and I don't like it any MORE now.

Another interesting story (well, to me, it's interesting) was that after my appointment, in my daze, I went to the pharmacy to get more drugs. 45 minute wait, she says. I think.....Good time to get my records for my personal file.

I had called earlier in the week and picked up my cd copy of the MRIs. Then I went up to get my physician's notes. Sub basement for images, 8th floor in another building for paper records. I get lost. Mass General is a huge complex.

I find the place I'm supposed to be and one elevator has a sign OUT OF ORDER on it. I press the button on the other one and hear whirring. I wait a while and see lots of people coming out of the stairwells, some chatting, some in groups. I keep hearing whirring, and look up to see that it's still on B for Basement after a long while.

I start up the stairs. 8 floors. Keep in mind I'm at a few days over a month having this rod out, and still healing somewhat.

I arrive at the records place and an unfriendly woman sends me out of the room and says to fill out a sheet in the waiting room. There is a pile of forms. I am the only one there. I fill it out in detail and go in to see her and also tell her I need all my records and lab reports from two doctor visits: Jan 16 and today, and the radiology report from April 16. I tell her I probably won't get today's notes since I was just there, but that she can mail them to me.

She looks in her computer, says "He's already signed off on them. It's your lucky day."

I am pleased something went right. That should always be my first clue something is NOT right.

The copy machine whirs and paper starts coming out and she starts chatting with her office mate about what kind of pizza she likes. It's 12:30. The notes are put into an large envelope and taped shut. I thank her and go tromping down the stairs 8 floors so I can go back to the pharmacy and get my drugs and go home.....a long hot drive.

On the way to the pharmacy I pass the same information dude who told me how to get lost finding these places. I tell him the elevator is busted. He says he knows, there is a sign on it. I tell him, Well, the other one is now busted. He says ok and as I walk away I hear him on the phone to someone about it.

Of course, my script is not ready, so I sit down and open the envelope to read the notes. I have a paragraph from the mentor doctor from today saying exactly NOTHING, a copy of my bloodwork and results from Jan. 16th........and NOTHING ELSE. WTF??:::

I have to go back. I've put some mileage on that leg and it's getting real sore but I go back and the elevator is still broken. Back up 8 flights of stairs. I get to the floor and fling open the door and a woman is standing at the elevator with a copy paper box and I say, "It's broken." She says she thought she heard it running. Ok, wait for it then, and I go to the room where the records are and the little lunch clock with the red movable hands say


I must have scared the copy box lady with my shouting "BOB SAGET!!!!"* because she was gone when I left the room.

Hump back down the stairs and there are people stepping off the elevator. Another "BOB SAGET!!!!"* erupts and I tell myself I'm so done with this place.

Celebrate your good health today.

* 'Bob Saget' is now a swear word, according to Tourette's Guy, who can be seen on youtube by searching for, well, Tourette's Guy. Not for everyone. Watch at your own risk.
post #484 of 1017
Geez Bonni...that sounds frustrating! I'm embarrassed on behalf of the rest of my profession if that makes you feel any better! (P.S. Bob Saget was always a swear word OBTW!)
post #485 of 1017
Thread Starter 
Don't be embarrassed, DD. It's no reflection on anyone but the professionals involved.

Medicine is not an exact science, and I'm sure that only a small part of how organs and systems work is known, not withstanding how they work in relation to each other. And how much is the mind in control of the rest?

Frustrating indeed.

However, good Support Staff is critical to any doctor and can make it more palatable to receive no news or bad news.
post #486 of 1017
Wow. This is getting ... Jobian ... Bonni. I'm still praying for resolution for you.

- KK
post #487 of 1017
Thread Starter 
Thanks, KK. It just keeps spiralling. It's getting funny rather than frustrating anymore. I feel like Randle P. McMurphy. I went into this feeling fine and left a zombie.

My nurse case manager called this morning. She said I need to see a psychiatrist. She said maybe they can come up with a different med for the headache that will also be an anti-depressant. I said I'm on one NOW. She said It isn't working. I said you'd be depressed too if you had unsolvable problems for over a year. She implied it was more psychological. I said Do you think this is all in my head?

She said Sometimes when chronic pain goes on too long you can make yourself believe you're still in pain when you aren't. I said So the CT scans that show an inflammed ilium wasn't real, my head pounding every day isn't real, and a foot that has had nerves cut out twice and is still painful to walk on is not real. It sure seems real to me!

She backtracked and said No no, I didn't mean it wasn't happening, I meant you could be making it worse than it is. I said I've been doing my best to ignore it and carry on and when the rod came out I was SURE it would all go away. If I were 'imagining' this, I would IMAGINE it to be gone!!! It didn't go away. Now I don't even know if the MS is there or if it's something else......wouldn't YOU be confused and frustrated?

She agreed there. ha

So she'll send me a list of people to see, and it might be a good idea to yell at a therapist. What the hell, it's one more to add to the list.
post #488 of 1017
This just in Bonni is crazy....LOL...that is funny. Get thee to NYC and get some good help, sounds like a whole lotta yahoos you've been dealing with.
post #489 of 1017
Thread Starter 
It's a scream, allright.

I tend to put people in categories depending on how we interact. They seem to fall into these few slots:

Somewhere in between the two
Straight Shooters
Losers without a clue

Some are more than one. I've seen Losers who don't have a clue, but they'd never lie to you. I've seen intelligent people who will play you like a violin.

There are more subcategories, but IMO you can pigeonhole most people into one or more of these. And some doctors fit neatly in the less desirable slots. Not that there's anything wrong with that, but I don't like to do business with those types.

And never forget, your HEALTH is BUSINESS to those in the medical field.
post #490 of 1017

Who do we appreciate?
post #491 of 1017
Thread Starter 
You're starting already, eh Cirque? Lessee.....I forgot the Annoying Smartass category.

Hey, I'm generous. I let Richie-Rich slide by on the NYC comment. I'll meet him in the Lounge for a smackdown. I'm in the MOOD to kick some ass. heh heh
post #492 of 1017
I'd loan you mine but my wife would be upset, because she is the boss of me... :
post #493 of 1017
Have you considered aluminum foil?

Comes in sizes for your cat too.

post #494 of 1017
Thread Starter 
That's one sad lookin pussy.
I like the duct tape strap, but the man-thing should have dilated eyes like his kitty.....

I needed a laugh today. Thanks, man!:
post #495 of 1017
They were trying to get me to take Cymbalta (anti-depressant), I told them also I wouldn't need an anti-depressant if they'd just FIX THE PAIN!!! Since Cymbalta interacts with Imitrex, I never did take it (have a full bottle here, unused, because I took the stuff home THEN read the fine print).

Thank god my Neurontin worked.
post #496 of 1017
Thread Starter 
I hear you, sib. I feel the same way!! Get rid of the pain, I sleep, I function. I'm not depressed, I'm pissed!

I seem to be losing it lately, and it has to be the meds. I can't remember what I had for lunch......2 hours later. I have to look in the dish drainer and trash to find out what I ate.

Today I lost time. I remember looking at the clock at 12:28, then the next time I looked it was 4:07. So what, you say? I thought it was only 1:30 and I was ready for lunch!
Then I thought, What the hell have I been doing all afternoon? On the heels of that, I was hungry.....didn't I have lunch? (I didn't).

I can't write without messing up some of the letters. I forget to add r's and e's a lot.
I'll make a list of 10 things and I'll mess up at least 3 of the words because I can't remember where I am when I'm writing the word and I'll skip ahead.

Here's something fun. I needed a battery for a wall clock upstairs.
I go down to get one, see that there's dishes to wash, start the water and let them sit (no dishwasher) and take out the trash.
Then I'll go upstairs because there's wastebaskets up there to empty, see the clock and forget what I went up for, go down to get a battery, check the mail.

After I check and read the mail, I throw the junk mail in the trash, see the dishes now sitting in cold water, run new water and remember the clock.
I go upstairs, first thing I see is a wastebasket. OH YEAH.
Collect the trash, see the clock, get angry for forgetting it all afternoon, set down the trash, go downstairs and forget what I needed, and DO THE DISHES.

It took me 6 hours to get an AA battery for the clock.:

I don't want to talk about my blurry vision, the fact that I'm cold all the time (before I could be naked in snow and feel good), I'm having nightmares, and I still have a GD headache!!!

I'm not crazy.......I'm OVERMEDICATED....but when I tell my doctor this....he keeps me on it.
post #497 of 1017
Thread Starter 
Dear Epic Diary,

Last night I slept for over 10 hours. (I used to sleep 6-8 and wake up feeling good). I feel like I haven't slept at all. I woke up with a massive headache and moving my eyes even hurts. I have things to do, and I'll do them (or at least hope I do them), but it won' t be a good day today.

I had nightmares about skiing at Jiminy Peak. I had one ski, no goggles, no poles, no gloves, no helmet. Everyone was having fun, and I couldn't find my gear. Someone was trying to keep me from skiing and they were always in the shadows. I was afraid.

When my dreams of skiing are scary, that's the LIMIT!!::
post #498 of 1017
Thread Starter 
PS. Hi Robin, if you got this far.
post #499 of 1017
Originally Posted by Bonni View Post
I hear you, sib. I feel the same way!! Get rid of the pain, I sleep, I function. I'm not depressed, I'm pissed!

I seem to be losing it lately, and it has to be the meds. I can't remember what I had for lunch......2 hours later. I have to look in the dish drainer and trash to find out what I ate.
I had that smit happen to me when they tried to put me on Zonegren/Zopneside for migraine prevention. I forgot my ATM pin codes:. I was totally ADD. That might not be so bad, but my wife ws already on Zoneside for her seizire disorder. I already have to keep up with all her stuff. I quit taking it the minute I figured out the connection cause we can have a household function under two senile people!:
post #500 of 1017
Thread Starter 
Why not? It works for us.
post #501 of 1017
Thread Starter 
I passed the 500th post and didn't celebrate. OK. Whee.

Funny you should mention Zo-whatever. After a lengthy discussion with my hometown neurologist, Dr. S, I'm going off the Nortriptyline and will start Zonisamide tomorrow. Let's hope it's not the same thing and that I have good results from this.

Dr. S is also affiliated with Harvard....he is also a Clinical Instructor of Neurology at Harvard Medical School. So he's no slouch, either. At least he's close to home and he LISTENS.

He's not convinced either way....transverse myelitis or MS. He's suggested a spinal tap, but first wanted an NMO antibody blood test. He thinks there is something going on with the autoimmune system because of the stomach and its responses to steroids and my neuroma foot that keeps recurring despite 2 surgeries. He looked at my MRI's from 2004, 2005 and Mass General's, and he's seeing evidence of lesions on the spine and brain. So....

I'll try the new headache med, get my reports (I've already sent for them), get the results of the bloodwork and go from there. In the meantime, why worry? Where's my tinfoil hat?

It's snowing. Unreal.
post #502 of 1017
Thread Starter 
My first try at the new med is a bust. I took the first one last night, and slept a good 8 hours without nightmares, but I woke up with a headache. It faded about 11 am, but started ramping up around 3 pm, and is now a solid 9 on the scale of 1-10.

I'm ready to just quit everything and leap off that scaryass El Chorro trail!
post #503 of 1017
Thread Starter 
I just got an email from my case manager who thought she sent me a list of mental health professionals on Tuesday, thought I lived in Connecticut, and wanted to know why the other doctor took me off the Nortriptyline. She also said she sent me 'an article that may not be pertinent to me but some areas or passages may be helpful in understanding our feeling when we do not feel well.'

I never got an article (she must have sent it to Connecticut), and I could write a friggin BOOK on what we feel when we do not feel good. Like I don't have a clue about this stuff after hanging on by the skin of my teeth for 16 months. Puhleeeze. :::

We talked for half an hour on Monday. Who was she listening to?? It certainly wasn't me!!!!!:

I no longer wonder why some people fall through the cracks in the system.
post #504 of 1017
Bonni - Somebody -- somewhere in the INSCO hierarchy -- has the power to assign a different NCM to your case. But it won't happen unless you make it happen.

(Remember, these "professionals" work for YOU ... not the other way around.)

- KK
post #505 of 1017

you need to try something different.. Don't poo poo it till you try it
post #506 of 1017
Thread Starter 
Why not. I'm also thinking a witch doctor might be in order.
post #507 of 1017
look into it.. i know people who this has changed their lives..
post #508 of 1017
Thread Starter 
I have the same view of yoga that I do of God. Some people swear by it and can't live without it.

I've read that some of the yoga moves are actually damaging, but I can't remember where I read it.

I've been told to try acupuncture, changing what I've eaten my whole life to a new diet, praying 24/7, letting 'faith healers' wave their hands over my body, shrinks, sun worship....

No one ever suggests that I should just get good n drunk and get it over with. If I have a daily hangover-like headache, and I get drunk, I can't have a hangover when I get up, can I? It might just cancel out and I'll be normal. It's as good a cure as any.
post #509 of 1017
Bonni, I have a solution for you!! A cure all:


post #510 of 1017
Thread Starter 

Hey, if I'm going to try yoga, I may as well try this! ::::
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