EDSS score??

I have SPMS; I asked my neurologist what was my EDSS score and he responded by saying it would take a lot of time to determine it and that it wouldn't make any difference.  He said that I was probably 2.5.  Well, he only sees me sitting when he comes into the exam room.  I assume he knows that I use a rollator simply because it's right beside me when he comes into the exam room.  He never taps a knee or watches me stand, much less walk (or attempt to walk).  So I looked up EDSS scoring on the internet to determine what I thought was my score and it's reflected in my signature.  Then I read on a recent post regarding stem cells that a treatment depended upon the EDSS score that the neurologist said.  So I'm thinking it's very important that my neurologist "shape up and determine my score" and get it into my chart -- who knows, it may become important some day- it seems so basic -- just thinking about his attitude makes me so mad. 

So, I have a few questions.  (1) Regarding persons on this site with PPMS reporting their EDSS score; does this score reflect their disability when they are experiencing an exxacerbration?  (2) Should I insist on my neurologist determining my EDSS score? 

Am I making sense?

I am constantly amazed at the fact that doctors can be in my opinion so uncaring. The real answer is probably that he doesn't have any real suggestions to help you improve in any way so therefore to him your score does not really matter.  Nice huh? Barbara  Oh I don't really know what my score is either. It is funny I do not really think any doctor has actually gone over thouroughly any of my results it is just after educating myself that I can understand what the tests and results really mean.

NAC and glutathione push for years all supplements in protocol)IV vitamins b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyl 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

My second neuro (the big name guy) spent twenty minutes observing me walk down a hallway, walk backward, balance on one foot, then the other, then with eyes closed, then finger to nose, then eyes closed finger to nose, then a short series of dexterity tests and wooden puzzles with blocks and balls... Sounds like yours is making his version of 'an educated guess'.

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

Mary Ann I kind of wonder if your doctor uses the EDSS scoring routinely because it is not at all complicated, but the sure as shootin' is going to need a minuete to do it. It is not that hard o determine the numbers as the scale is heavily weight for ambulation/walking ability so if you use a rollator to get around you cannot possibly be a 2.5 which is "Mild disability in one FS or minimal disability in two FS (functional systems)". AN edss of 6 is "Intermittent or unilateral constant assistance (cane, crutch, brace) required to walk about 100 meters with or without resting" That's football field length with no cane or crutch if we are talking being a 2.5 vs a 6! How can he possibly say that a person who uses a rollator is a 2.5, unless you could walk that far without it but use it for fun? Yeah right! That's completely bizarre as you saw when you looked at the scale yourself. see one HERE As for stem cells and other treatments in the future and their requirements, if they needed an EDSS reading at the clinic they will do it certainly. You might get better results at an MS clinic as far as these things go, but they will not be at all keen on the abx! We do have to self advocate, gooed job being proactive. 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

Thanks for your reply!

Mary Ann

SPMS. Dx 1991. EDSS 6.0, 6.5, 6.9; Weldon CAP. started 3/08.  All supps, NAC, Doxy, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition 

I don't know that the lack of a EDSS score equates to medical incompetence on the part of the doctor.  Kim's been to her local neuro for years and when I asked him about it he said that he had never measured it because it's usually done in a research environment.  This made sense to me.

I can see where it's going to require a lot of time to do this (doctors require all sorts of documetation before they can conclude anything) and at the end of the day, we generally pay attention to symptoms not scores.  I'm not saying that the score is unimportant, but I think we here are more interested in it's composition and how you determined it on your own.

In the case of Kim's score that's in her sig - I used This Site which pretty much talks about how far you can walk as a measure.  Perhaps, this would be a good thread here at CPnhelp, a thread titled "How did you determine your EDSS?"


In pursuit of ABX

Don't Allow What You Know To Get In The Way Of What Might Be

Mine did pretty much the same things (I flunked them all) that MacK's did, and somehow ended at 6.7, which I think may have been a tad more than I was when he gave it, but the rate I was sinking would have put me there in another month. I certainly could not walk more than 100 FEET without resting, but used only a cane, for which I would soon substitute a walker.

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

As an RN I find it fascinating that when we go to a doctor and pay him for a service this is one of the few people we are unwilling to fire if we feel the level of service was unsatisfactory. The contract between Dr. and pt is no different legally than  any other contractual  agreement between parties. I can tell you from personal experience that when go to your MD that you be prepared to demand (within reason)  satisfaction. You can legally refuse remittance to your MD if the level of service was not reasonably satifactory. The important thing is to go in prepared and educated about your condition and what it is you wish him to do. He also has the right to refuse services he may deem unreasonable  or possibly dangerous. Be prepared to answer his objections and stand your ground. Negotiate! Many will be willing to work with you if you free them from the liability they percieve to be present  if things should go south with your condition. Specialties e.g., nuerology, infectious disease, rhuematology may be much more difficult than  your GP or internist to deal with and educate. You may start slowly with  your first visit to request the lab work and prime him/her about  CPN and the associated infectious agents. Do not expect them to go to the website and read up-thier time is limited. Print out some short articles from the Physician's page. Quest labs does a Chronic Fatique Panel that includes most of the tests needed (your local Lab company can furnish a copy). Ask that the results be relased to you prior to your next visit with the MD. Find someone (RN,Lab tech,etc ) who can help you interpret the results in the light of what is found here. On your next visit discuss the CAP protocols along with articles from the Physicians Page supporting the findings. Offer your MD a letter of release from liablity (I used one I adopted from the MP site which I will attach in a day or two) my doctor who was willing to do this without it -very much appreciated it and put  him at ease to do what was  unfamiliar to him. Remember this stuff is not taught in med school! People fear what they don't understand.The MD should be your partner, your equal in this, treat him as such and he will respond. Educate him in small doses. Your goal is to move him from his comfort zone to a new place of understanding. Once you and he have agreed to go forward -be diligent in documenting your progress and responses to treatment. Your progess will be his education and others will benefit from it.  Paradigms in medicine take 10-15 years to be accepted. Your MDs education will take 1-2yrs.

Remember -medicine is a fee for service business- no service -no FEE!

Onward through the fog!-unknown(it was writtin on an old t-shirt i had)




Wife with CFS/FM/REYNAULD'S 15YRS Lab positive for CPn/HHV7&11/EBV. Son 17yo with FM 3yrs- both on all supplements since 8/08 Started CAPs per Strattons modification (clindy/pyruvate/doxy) started 11/17/08

Thanks for your long response. Please don't misinterpret this comment.  This MD is a neurologist and he is already perscribing my antibiotics.  I have not seen him since his perscribing.  But he appears to have no interest.  I do not have the energy or desire to educate him; obviously I'm not too fond of him.  He's an arrogant SOB, quite unfriendly and mean (to his nurse at least); that is probably too harse a term; but he does not act like he loves his job!  And he's handsome!  lol!   I have reread your comment and certainly will take it to heart. I needed that.  I'll be making an appt with him in the next few mnths.    Thanks

I'm still curious about those with PPMS and their EDSS score.  Is it when they are in regression (as opposed to remission).

Mary Ann

SPMS. Dx 1991. EDSS 6.0, 6.5, 6.9; Weldon CAP. started 3/08.  All supps, NAC, Doxy, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition 

We don't regress. That is what Primary Progressivwe means. And the worst is that, at least with me, it is an ever faster progression.

But having been on this site has been a learning experience in that I believe I have had VERY minor symptoms for decades, and it was only after the hay-unloading incident in 1995, with fire ant bites and being septic for five days that set the acceleration into warp speed. I also realize that the people who diagnosed me listened to what I said about the years of relentless increase of symptoms. At that time I never had a single clue that any of the many tiny things were related to the later disease.

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

Thank you! I also was never given an edss score but I now know that I'm probably a 6. I don't watch, no less play, football, but I assume that a football field must be several blocks long (like the National Gallery of Art). I can do that with a cane if I am rested. 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13