EDSS 6.7 to 2.5

Submitted by katman on Wed, 2005-12-28 09:27

MS lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibiotics, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSS scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMS.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

At 6 AM this morning my husband said "You are not as stuffy and snory as usual lately"  I answered that I didn't know I did that.  He said sometimes he has to wait for me to breathe and he has known when I did because I was stuffy.    He said he didn't know why.  (I do not have sleep apnea- he is just a worrier.  These 15 months have been hard on him)  I do, I said.  I believe it is the NAC and I am getting better.  (On that point or any other, I would appreciate comments because this is serious stuff.)  And I said that I am not the same person I was a year ago. 

 Sorry, Sarah, the neurologist  said, with the smirk of neurodisbelief, that he would have to "see for himself"  Obviously, he won't see yours or mine.

Flagyl will be due soon-  my 16th journey into the abyss-  have to check my calendar.  Meanwhile, I am going to enjoy the "incredible lightbess of being".   But to all my shipmates, the new world beckons.

Rica

Ignorance is voluntary bad luck.   Lauritz S.-  A True  Viking         If you come to a fork in the road, take it.   Yogi Berra

 

Great post Rica! Good for you for going after that neuro. Too bad he was so unreceptive. Brother! 10 years downhill? and he is not interested in how this came about? How can that be????? How??? NAC makes me stuffy too. No question at all about that. i do not snore though. I also do not sleep very well. My nights are spent in a seeming half doze. I can't wait until you are cured even further. A toast to you! Marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

"M S lesions NEVER go away."  Oh, really, perhaps your neuro would like to see my scans, if he wants to "see for himself!"  I'll admit most of my lesions haven't gone completely away, some in the periventricular region are here for keeps, but most have shrunk and some in the outer regions definitely have.  "I can't see that happening" said "mine" to the radiologist, so yes, your experience sounds totally familiar, except he didn't say "If you need me, call."  I was about 7 and am now, like you, about 2.5, maybe 2 on a good day!  I think people like you and me are just inconveniences to most neurologists: they don't want their precious little theories punctured.As with Marie, NAC makes me snuffly, but mainly in the morning, for some reason.  And I sneeze.  David was the one who slept noisily, though.  This cleared up somewhat with the antibiotics, but nearly completely with the NAC.....Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.
D W

Welcome news, Rica! You deserve immense credit for sticking at it! I think that, with the Internet, things are beginning to move. It is just not in the natural history of the disease for PPMS or established SPMS to get better. (I want to keep a couple of goats when I retire, which will be in four years' time: your advice will be critical.)

 

David

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

CPN CURE CURES SNORING I can see the headline now...

On Wheldon/Stratton protocol for Cpn in CFS/FMS since December 2004.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

NEURODISBELIEF.  Great description, Rica.  My young (33yrs) neuro seemed so interested and positive and then the old dinosaurs got to him (not to mention fear of malpractice suits, I'd bet), and he basically washed his hands of the notion of pusuing abx.  I'm planning on making another appointment next summer, after I've done abx close to a year.  I'll haul my old MRI in and we can compare it to the 2006 one.  I'm betting my future, literally, on the results and I'll bet I knock the young man off his high horse with them.  Just have to keep hacking away at the establishment.

I am SO very happy to hear of your blue-ribbon showing at the neuro's office!  (Sans goats, no less.)

 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Rica! I am very proud of you. You stood your ground. That doctor of yours seemed offended that you got better not using his wisdom. He did not give you a referral for an MRI, did he? 

People like him have the power to help others. He was not even willing to listen.

Barbara.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

 

No referral, Barbara.  He wanted me gone, I think.  He said "You can always call me if you need me".  I think I won't need him again.  My faith in the god-image of neurology is shaken to its foundation.  The support of  my husband and my PC physician have been gold through this.  I need them and I need all here who are in this exodus from hell with me.           

Rica

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica, you can always get a referral from your PC, anyway. You don't need him anymore. Good riddance.

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

Yes, Barbara, And I will do so in a week or two.  He got the first one (MRI) I had and I am now glad he did, of course.  Since the last was in June, it probably should wait til then, right?  Anyway, I have great faith in him.

I hope you caught up on sleep and are doing wonderfully well.

Rica 

 Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am