Is it MS or CFS/ME

[cydpink]

Is it possible to have MS and CFS/ME?
Was dx with CFS/ME 4 1/2 years ago, recently had new symptoms - severe nerve pain in feet which rises up my legs, stuttering, high back pain which radiates to my front, difficulty passing motions, difficulty passing water, spasms have worsened in my legs and stiffness in hands plus dizzeness and problems with balance.
Blood tests negative for RA and diabetes recently.


This discussion is related to How do I know it is ms?.

[COBOB]

I have not had a need to use heath care services of any type in the UK.  I'd suspect that there are some private neuro consultants that specialize in MS.  I think it would be pretty hard for an NHS Neuro to have a different opinion without proof.  I think I have heard of some folks going for an outside opinion to an NHS consultant's diagnosis.

Not really sure how that works or what the appeals process withing the NHS is (or even if it exists.)

Bob

[FoxC]

Wow, the differences are incredible. I know they're understandable too due to the different systems and I know both have their pluses and negatives, but when you've been fighting for years to get recognised as actually ill and not a hypochondriac it seems the US system works better.

Would you say that following a private healthcare route over here in the UK would give me a better chance of getting the help I need? It's so frowned upon here that it's a step I've not really given much consideration (not to mention that due to my health I'm unable to work and so it is one more thing to ask my partner to help me with) but I'm getting to the end of my tether. I'd like to be able to have some of my own (very promising) life back and I think it's time for me to accept that if private healthcare would at least properly investigate my problems and thus take me seriously, then it's a step in the right direction.

[COBOB]

OK.  In the US , most people  don't have to go through a local approval board to get to an MRI or Neurologist.  GPs can order MRI and, if they wish, perform the LP.  LPs are a pretty common ER procedure and most doctors get a few chances to perform them during internship and residency training.  Most of us also have to right to transfer our care between doctor as we see fit.

Thanks for explaining, since there are people in various countries here and we try and keep the information accurate.  These forum posts are searchable and come back up after many years.

Bob

[FoxC]

Of course  I've been mislead, I live in the UK where we're kept well in the dark about these things!

Besides, I wasn't meaning precisely that these tests would rule MS out but that as ME is - over here at least - diagnosed by ruling out other things, the tests would be a good place for doctors to move onto and at least they'd be then giving due consideration to a diagnosis of MS rather than ME.

The trouble in the UK is that getting an MRI or LP carried out is as likely as, well, as me sprouting wings, because of the cost to the system they carry, so as a diagnositc tool over here they're hard to come by. From a UK perspective therefore simply achieving the opportunity to have these tests means that you're being moved up the medical ladder of competency and will then see a neurologist who understands these things faaaar better than a GP.

Sorry to confuse.

[COBOB]

It seems you might have been mislead somewhere along the way.  MS is diagnosed by the clinical signs and symptoms, and having a negative MRI and Lumbar Puncture have nothing to do with it.  See the Revised McDonald Protocol.  MRIs and LP can not rule out MS.  MS is a disease of the CNS and it is diagnosed when you have two exacerbation in different neurologic areas separated by more than 30 days and other causative diseases have been ruled out.

While some doctors seem to think you need a positive MRI and LP, it is not required.  Some doctors and insurance companies seem to think it is.  

I have lesions on my MRI and a negative LP, and was diagnosed with RRMS.

Bob

[FoxC]

Or you were simply misdiagnosed in the 1st place and it's been MS all along. GPs seem very reluctant to send patients for the necessary MRI's and lumbar punctures that would rule out MS and thus leave the diagnosis of CFS/ME. The two are so so similar in presentation that I wouldn't be surprised if a large number of those diagnosed with CFS/ME are actually suffering with MS.

I'm in a similar position to yourself and am trying to build up the courage to ask  my GP to send me for the above tests, but as I'm sure you've found for yourself, because of the myriad of symptoms presented with CFS/ME I've become almost ashamed to bring anything else up with my GP in the fear of being branded a hypochondriac. But at the end of the day we know our own bodies better than they do, and if something is wrong then it's wrong and we just have to keep pushing them until they've done every test possible. I've found GPs are far too quick to judge me as wasting their time rather than believe that any one person can have such a list of symptoms.

For the record I'm so ill now I'm on disability benefits and unable to work... and yet I'm still scared to ask my GP to consider MS. How backwards is that.

[cydpink]

Hi
thanks Terry, am seeing my doctor tomorrow for repeat meds so may mention it to him if I can pluck up the courage.

[saveone]

Hi cydpink, there is no reason why a person may not have more than one disease/disorder going on in their life at one time.  It is believed that having one autoimmune disease may open the door for a second.

Have you had any new testing, i.e.  MRI of brain, spinal column, bld work, etc recently?

take care and live well,
terry