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snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 6/22/2006 11:57 AM (GMT -7)   

Hello everyone,

 

It's now time to update the story of one guy and his attempts to find out what's

wrong with him, in a world of confusion, idiots, and assorted points of view.

 

Quick update for those that have not followed along. 8 weeks ago, went in for a new eye glasses prescription came out with Optical Neuritis and the suggestion of MS. Since then, I have had an MRI, and an LP, nothing showing. Since then I have had a blood patch. Since then one of my neurologists told me to go off my beta-blocker BP medicine and I would be fine. Since then they found I have no carpal tunnel. Since then they have taken Liters of blood. Since then.............it has been as if I knocked on the doors of HELL itself and like a idiot, when the doors opened I walked in to have a little peak not waiting to stay, and now I can't get those doors back open.  

 

Monday was the best day I had in about 10 weeks. Some of my symptoms turned to pain and took the place of the needles and pins or tingling. It is just an ache. It does bother me, but is not hard to live with. Then came Tuesday. The day had been another day of me doing pretty well. The Providil was doing its job. My son and I ran out to a Wendy's picked up some food, took it back to house, and prepared to watch the Stanley Cup.

 

All was fine........until 11:10pm. I was sound asleep, woke up suddenly and upchucked. More like when a baby

Spits up. Very weird, cleaned up, and went back to sleep. 45 minutes later, same scenario. Went back to sleep. One hour later, it started. Major vomiting. And for the next 12 hours I continued over and over again.

At one point I thought my stomach was going to rip. Finally I got hold of my doctor and he got me some

stuff to stop it, but the damage was done. Turns out that it was either some kind of virus or food poisoning

 

Either way, it kicked my symptoms into Very High gear. So the upchucking was bad, very bad, but if you add the sequences of every symptom and pain, that just the day before were so mild, now at their max, well........it is incredible to see what the body can put you through and you can't stop it. Couldn't eat, couldn't sleep, just got weaker, and more miserable.

 

The next day was better, weak, but somewhat better. Symptoms reduced a bit, I was able to get a few hours of sleep. And this was a HUGE day for me. I had an appointment with one of the best Eye Neurologists in the country. I got there and for 5 hours they re-did tests, brought new ones and shined enough light in my eyes to light up Rockefeller square.  And truly, as she was proclaimed to me by my other doctors was a class act. Professional, Bright, Interesting, Great Bed Side Manor, extremely thorough. So different in so many ways from the other Nero's I had dealt with. (One thing that seems clear in my story and hundreds of others on this site and others, is the difference in doctors. It is truly unbelievable)

 

At the end, she pulled me into her office, sat down with my chart, and went over everything. My MRI was on her wall as were the results of my LP. She then showed me that radioigist made a mistake. She circled 4 perhaps 5 small white spots, some slightly bigger than the others "These are lesions. Small ones yes, but still lesions and if you add your symptoms and the results of you P100 test, your Optic Neuritis tests, I pronounce you with MS. It doesn't matter that you don't have bands yet in your LP. Besides it doesn't look like they did a great job of that in the first place (reading the note about how half the test was voided because of lack of fluid) She said the others including the radiologist were scanning the films quickly looking for major lesions and when they didn't see them they copped out or they tried to push it off as Age relationship. Baloney! She said that this fact would be in the letter she sends to all the doctors "in a nice and professional way". Then she was mad that they had not done a spinal MRI. She said the only thing that would change her mind IF she saw an injured spot, especially in the "C" Section of your cervical area (neck) especially since I have a ton more symptoms in my arms, hands and upper body than the lower. So she set up that MRI in just 5 days and hopefully to finalize this adventure I have been on.

 

She believes that the spine MRI will show us something. She thinks there will be lesions and was gitty with delight that she will see the films, before any of the other doctors. We discussed the other doctors and she said that at Harvard Medical school, she was always pushed to look outside the box. So when she gets MRI's and information from tests, she looks very carefully at it, not just the highlights but the whole test results or MRI film.  She said she did so, because of the P100 test. Clearly something was wrong. Something in the brain was stopping the transfer of information from your eyes and had nothing to do with ON. Therefore it had to be the brain, that's when she returned to the film and studied it in every detail and found the white spots. Simply, she says, common sense.  If I have symptoms (verified), I have significantly slow p100,(verified 3 times as the repeated the test to be sure) I have optic neuritis, (verified by Opthomologist, Nerologist and now her) then I should have lesions somewhere. "Something just didn't add up Mike"

 

She said they needed to look at the MRI very closely and not take the radiologists word for anything.  She said that my GP or one of the other Nero's, should have ordered a Brain MRI, a Spinal MRI, and then an LP.

I told her that my LP showed nothing, and she said.....doesn't surprise me, but those bands will show up.  She also told me that it is bad enough when an individual comes in thinking they have MS and they hope they can endure the rollar coaster ride, but in your case, you never claimed you had MS, you didn't even know what it was, and it was your eye doctor that put you on the carousel ride. That should have been a key to jump into major action. When another doctor makes a explaination point, he is doing so because he thinks (out of his experience or gut reaction) that there is a major problem.

 

However, she told me that my Optic Neuritis was almost completely ended. She said the next time, we will fight it with some Meds. She said she thinks that my MS is the Re-Lapse variety and it's time is almost at an end, for now. But with reserve, she also said I can't make a conclusive statement yet on Progressive or Relapse. Not quite enough information yet. We also talked about what happened during a Major Stress incident that happen to me a few weeks ago and the virus or food poising and its reaction. She told me that fits the profile and I have to be very careful as to Major Stress situations, and that she will insist on a flu shot and pneumonia shot in the fall.  Getting sick is awful for MS patients

 

So, it appears that I may not have to go the 15 rounds after all. It appears that all the forums, all the chat rooms and all the advice is correct. IT DOES TAKE THE RIGHT DOCTOR to work with. And from experience, finding that doctor is a pains taking process, and luck and the right place and right time, mean a great deal

in the process.

 

Hopefully this part of the story will end next week. Whether it is MS or injury, or another road opens up. Either way, As I have said many times, I am grateful for this forum and others. For whom I would not have known the questions to ask, the challanges to give the doctors, or to hang on.

 

Hopefully the final chapter/round of this book next week and another started.

 

M

 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Ocotillops
New Member


Date Joined Jun 2006
Total Posts : 7
   Posted 6/22/2006 1:13 PM (GMT -7)   
M,
 
You must be relieved just to be "believed".  Not just to have a dx, but that all of your symptoms can be "validated" and that you are not "making it all up", or related to "age", or "stress".
 
I have never been accused of any of the above, but nobody can tell me what is wrong with me.  They can only tell me what I don't have.
 
You're almost there!
Les


whtedragons78
Regular Member


Date Joined Jun 2006
Total Posts : 74
   Posted 6/22/2006 2:15 PM (GMT -7)   
So glad you found the right dr to take you seriously. Keep us posted.
Cyndi

snowdog
Regular Member


Date Joined May 2006
Total Posts : 137
   Posted 6/22/2006 5:21 PM (GMT -7)   
Cyndi, Les and all you newmembers and limbolanders that will read this:
 
As with the Old Timers on this forum and others, that support our feelings, our frustrations, and our discomforts I can say that I have been were you are and are going. When I first joined this forum I was nearly a mental case.
 
I could not understand the holdups, the questions, the tests, over and over again. When one Neuro told me it was blood pressure medicine, I nearly lost it.
 
The truth is that more often than not you will not be taken seriously. MS is just such a mystery, and so many doctors including the specialists are reluctant to go outside the box. I was told early on that it was finding the one doctor that was willing and able to not just go down the white line and say " If it doesn't meet the McDonald Criteria it isn't MS" but would try with all his/her knowledge to find out WHAT is wrong.
 
The other problem in my opinion, is that doctors have an easier time proving fibromyalgia, or Lupus or Lyme than proving MS. I have learned that there may be 15-20 new dieases that are being looked at in labs all over the country that may have a tie in with MS. In otherwords, MS-1, MS-2, MS-3 etc. All with their own unique symptoms and indications. So many doctors just don't know where to put you unless you fit the MRI, and the LP criteria. And there are a bunch of tests that I went through that I have never done and one came out with the results that sent my Neuro back to MRI to start looking. She found what others had missed. Or was it that they just read the results from the Radiologist and never study the MRI closely.
 
I wish I had answers, I wish that I wasn't positive for MS. (and it still could be changed if they find some damage to my spine) I have talked to personally, and on the net with people that took YEARS, not months to get a DX. On this forum is a member that after 7 years (I think) of being diagnoised with MS......the doctors changed their minds?
 
What you have, what you are trying to find out will be the most frustrating event of your life. Unfortuanately it takes money to bounce from Neuro to Neuro in hopes that one will be more than a report reader. Keep digging into your local resources, ask MS organizations for lists of Neuro's. You will find bad one's in that list, but at least some of them are experts in MS or the organizaiton would not put the names on the list.
 
Always, Always, Always.......if in your area there is an MS Clinic, or Hospital that is known to be an MS sanctuary...go there. They deal with people like you and me every day.
 
Finally, I was lucky......but those that have kept up with my saga, know that I have been in Hell. At my breaking point a little ole GP came to my rescue and said as he usually does " I don't give a darn about what the others say, I am you doctor" I was so exhausted, so depressed that I had a gun next to my pillow. I was ready to die, rather than put up with the symtoms, the frustration and the depression. By giving me medicine to over come that exhaustion, I cleared my mind, got stronger mentally and pushed and pulled wherever I could. 1 GP and 4 (or 5) Neuros later, and 3 1/2 months later.....I finally found the one that came through for me, although I wanted a different answer.
 
I didn't want MS, didn't want Lupus, didn't want a bad cold. Just wanted them to make me feel better and like my knee surgery a few years ago, work on it daily, deal with the pain, and in a few months I would be back to my old self. That's not going to happen it appears. 
 
So, keep going down the road, seek help everywhere, knowledge is power so study everything you can find on MS and every other problem known to mankind that fits any of your symtoms. Don't fall into the dark oblivion because of depression. It is a place I hope to never visit again. If you do, go to a GP, Psychiatrist (that's where my sister got her help and her meds in the begining) or wherever, BUT DON'T HESITATE.
 
You can make it. I speak from experience. But as an email reminded me " ...without support, meds, and counseling", your looking at a never ending road that leads to nowhere. And without patience, assertivness, knowledge and pushing for the answers or the person that can give you the answers......that road will not only lead nowhere, but will become longest road of your life. Lean on your friends, cry on your wife/husband/boyfriend shoulder, get held and be held. Nobody does this alone very successfully. 
 
And write....to this forum and others if you wish. It is a way that I have learned to express and unload. To get it out.  Join an army from the land of Limbolanders, and fight. MS or not, you have a right to feel better and to get help. Do it.
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