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I have SPMS, total and permanently disabled, I have severe difficulty walking, cognitive difficulties. I am receiving Social Security disability benefits I am 47 year old male. When I was first diagnosed with RRMS 12/2011 I would have an MRI 1 or 2 times a year and see my DR 1 or 2 times a year. Now that I am no longer working and diagnosed SPMS and over the years the doctors have changed for the most part I only communicate with my doctor VIA email or phone and No MRI in the last 2 years. I am not complaining because at this point what else can the DR do for me.

My question is for those out there that have SPMS, on SSDI younger than 55 how often do you see your DR and have MRI.

Your feed back would be great.

Thank you.

RJK wrote: ↑Wed Oct 02, 2019 8:08 pmI am not complaining because at this point what else can the DR do for me.

Maybe you could try a ketogenic diet? Here's a published case study where a SPMS patient showed benefit.

viewtopic.php?p=258331#p258331

Twice a year, every 6 months. Haven't had an MRI for years.

Hi,

I'm 62 so I am outside the group you have specifically asked. How you described the frequency and nature of your interactions with doctors did disturb me. The impression I have is you have been given a superficial level of treatment and then been thrown in the "too hard" basket. Whilst many of us don't have a great opinion of doctors at least we are not reduced to email.
Is it possible for you to break away from your current doctors and find another group?
In my experience good doctors use a good circle of consultants and poor doctors use ineffectual consultants.
A question I always ask myself is "is this person helping me?" If the answer is no, then I look elsewhere.
Regards,

If your doctor is communicating with you in a timely manner, count yourself lucky regardless of the way it is being done! I am sure email and phone are much easier than you having to go to your doctor's practice.


"how often do you see your DR and have MRI?"

As infrequently as possibly. I am a little order than you at 61, But otherwise our stories are very similar except I am still able to get around on my own. I was diagnosed with RRMS 6 1/2 years ago. I have had MRIs at about 2 year or longer intervals, and at this point have seen my neurologist at about 18 month intervals. I used to go much more often but realized there was really no point.

MRIs are a good tool for diagnosis but are of limited usefulness otherwise - some people have lots of lesions and minimal or no symptoms and others have few or no lesions and lots of symptoms. Lesions also come and go regularly so depending on when you have an MRI, they may be present or not. You may find this time lapse MRI interesting:

http://www.msdiscovery.org/news/news_sy ... -meets-eye



" at this point what else can the DR do for me"

Very little, BUT... My neuro just switched me from Copaxone to Ocrevus. I was hesitant to switch because I was doing reasonably well after 6 years on Copaxone but after doing some research and seeing some amazing success stories about people showing major improvement with Ocrevus, including several people improving enough to be able to walk with assistance after being bedridden - " I’ve gone from being bedridden and now I’m walking! " - I changed my mind! You don't often hear too many stories of people showing so much improvement. Of course not everyone has had the same experience.

it may be worth your while to at least inquire/talk about Ocrevus with your doctor because you never know...

ElliotB wrote: ↑Mon Oct 07, 2019 3:10 pmMRIs are a good tool for diagnosis but are of limited usefulness otherwise - some people have lots of lesions and minimal or no symptoms and others have few or no lesions and lots of symptoms. Lesions also come and go regularly so depending on when you have an MRI, they may be present or not. You may find this time lapse MRI interesting:

http://www.msdiscovery.org/news/news_sy ... -meets-eye

After 20 years with this crap, I think I'm done with gadolinium enhanced MRIs.

NHE wrote:

NHE wrote:The test was done using the protocol from Doctor's Data. It utilized the chelation agent 2,3-dimercaptosuccinic acid (DMSA). It's one of the few FDA approved chelation agents.

The one interesting result from the test was that the DMSA pulled out gadolinium even though it had been 10 years since my last MRI with gadolinium contrast. During a more recent MRI, the tech said that all forms of gadolinium dechelate to some extent and get sequestered into the body's tissues. Indeed, there have been published reports of what looked like enhancing lesions, but which were detected even without the use of contrast.

Here are some links with relevant discussion and references.

• Gadolinium deposition disease.
  
  http://www.thisisms.com/forum/general-d ... ml#p244505
  
  Gadolinium accumulates in the brain.
  
  http://www.thisisms.com/forum/general-d ... ml#p234351
  
  My experience, gadolinium can stick around in the body for at least 10 years, perhaps longer.
  
  http://www.thisisms.com/forum/general-d ... ml#p219759

NHE wrote: ↑Tue Oct 08, 2019 1:26 am

ElliotB wrote: ↑Mon Oct 07, 2019 3:10 pmMRIs are a good tool for diagnosis but are of limited usefulness otherwise - some people have lots of lesions and minimal or no symptoms and others have few or no lesions and lots of symptoms. Lesions also come and go regularly so depending on when you have an MRI, they may be present or not. You may find this time lapse MRI interesting:

http://www.msdiscovery.org/news/news_sy ... -meets-eye

After 20 years with this crap, I think I'm done with gadolinium enhanced MRIs.

NHE wrote:

NHE wrote:The test was done using the protocol from Doctor's Data. It utilized the chelation agent 2,3-dimercaptosuccinic acid (DMSA). It's one of the few FDA approved chelation agents.

The one interesting result from the test was that the DMSA pulled out gadolinium even though it had been 10 years since my last MRI with gadolinium contrast. During a more recent MRI, the tech said that all forms of gadolinium dechelate to some extent and get sequestered into the body's tissues. Indeed, there have been published reports of what looked like enhancing lesions, but which were detected even without the use of contrast.

Here are some links with relevant discussion and references.

• Gadolinium deposition disease.
  
  http://www.thisisms.com/forum/general-d ... ml#p244505
  
  Gadolinium accumulates in the brain.
  
  http://www.thisisms.com/forum/general-d ... ml#p234351
  
  My experience, gadolinium can stick around in the body for at least 10 years, perhaps longer.
  
  http://www.thisisms.com/forum/general-d ... ml#p219759

Greetings:

"Gadolinium contrast agent can be toxic to the kidneys. The following site reveals research that gadolinium contrast is not needed for follow up studies. https://www.everydayhealth.com › Multiple Sclerosis
In my opinion the only MRI one should undergo is a FONAR MRI to see how fluid flows in the CNS. Once any observed abnormality has been corrected, then let the Neurologists do their thing. In any case, one should refuse the Gadolinium after initial diagnosis.

Best, Vesta

RJK

I'm sorry to hear your news. I am almost 55 and also in the UK. (Am just guessing from your terminology.)

I was origianlly RR and in the past few years they realised that since I have had no relapses, I am probably SPMS. Not that I am a cynic but this reclassification coincided with some deterioration and my asking them what the medication options were? NONE for SPMS.

I was never offered any at the time of dx as the relapse had gone, sadly without clearling the residual damage.

I saw a new neuro last month after a terrible experience last year when the neuro made me feel like I was a fake. I wished.

The new lady was much more sympathetic. She is sending me to the walk-assessment clinic and some talking therapy and also for an MRI. I didn't have a second MRI until 2017 and considering I was dxd in 2005 I do feel slightly aggreived at this.

So it's once a year at the most I would say. In the UK the NHS resources are stretched. I do feel like I've been left to one side as there is nothing on offer. I did consider just cancelling the neurology appointments as it seemed a complete waste of time and energy.

J