Give way weakness=psychogenic in MS?

[cp354]

Was diagnosed with RRMS a few years ago. I had been having odd symptoms for more than 20 yrs at that point.  Since I never seemed to return to baseline following my diagnosis (and in fact lost more and more functionality) I began to suspect that RRMS was not the correct type of MS.   Over the last few months, I began having increased balance issues and my legs became weak fairly rapidly.  My legs started to feel like jello when I walked.  As my legs got weaker, I began to walk slower and slower, for shorter distances, and more infrequently.   I finally made an appt with my neurologist.  He suspected a possible exacerbation, yet I have not really had any MS exacerbations in 4 yrs.  He prescribed a few weeks of oral steroids and I booked an appt with an MS specialist for the first time since my diagnosis.  I was 3 weeks into the steroid treatment and still taking them on the day of my appt with the MS specialist.  During the office visit, a neurological exam was done and an extensive history was taken (complete with a review of 3 yrs of prior mri).  A few weeks later, a lengthy Evaluation report was sent to me by the MS specialist.  For strength testing, he stated that I exhibited give way weakness and that he felt my balance problems and weakness were "non-organic" - which I take to mean Psychogenic. I was not "faking" my tests and I don't think my issues with weakness/balance are all in my head.  MRIs a week later confirmed "black holes" on my T1 images. Steroids did not really help, my legs still feel weak.  Is there any other explanation for "give way" weakness, other than Psychogenic (conversion, somataform - making it all up, faking it, all in my head"?  Thanks, CP

[cp354]

Followup to my last post.

I ended up booking a consultation with a new neurologist and I saw him in July.  I was apprehensive but I followed the suggestion not to bring any records from the prior MS Specialist exam.  I brought the last 3 records from my prior personal Neurologist's exams plus an old NeuroPsych testing result from 2008 which I only brought out when he mentioned he would like to send me for that testing (because I am having issues with Cognition/memory).

He did an extensive office exam starting with a brief cognitive/memory testing and followed with an office neuro exam + gait observation and strength testing.  He ordered a blood test, an MRA, Braain MRI, C-spine, T-spine and L-spine MRI and wrote me a prescription for Physical Therapy and Speech Therapy for the cognition. Since being diagnosed with MS, I have never been sent for a T-spine MRI, so that was a first.  I have done the T/L-spine MRIs and just did the MRA/Brian MRI so far.  I picked up the Radiology Report for the T/L-spine yesterday (I already have the CD).  I showed a "significant" artifact in the T1-T8 area, non enhancing lesion (healed no longer active) on my T-spine along with a lot of degeneration in the spine.  On the L-spine I showed mild cord atrophy, moderate stenosis, impingement of a nerve root in the lower spine and a condition called Epidural Lipomatosis.
When I googled Epidural Lipomatosis, I found that it is often caused by heavy steroid use, Cushings and obesity.  I've never been overweight, I don't have Cushing's but I have been on a lot of steroids. Some of the symptoms of Symptomatic Epidural Lipomatosis are, weakness in the legs, difficulty walking, loss of sensation, back pain. Some folks with Epidural Lipomatosis experience no symptoms.  Seems that I have the symptomatic type.  It certainly explains my issues with my legs.  The lesion at T1-T8 and the cord atrophy at T1-3 explains my arm weakness.
I know it can get complicated when someone has MS and spinal issues but if the MS Specialist had only put his bias aside and done what this neurologist did, I would have had answers and might have been able to take action to prevent the situation from deteriorating.  Again I want to thank everyone who responded.
-Christine

[LisaJF]

In fact, I would call his office and speak to him stating that you will send a written letter that he can not share any medical information, electronic, written or otherwise with any other medical professional.  He does not have your permission and to do otherwise is a HIPPA violation.  Sign it, date it, put your social security on it.  Make sure you send a couple of copies and follow up by asking the secretary to place it in your chart they have.

Sometimes I wonder about MS Specialists....

Just because a person has an idiopathic symptom without a physical or diagnostic explanation, does not mean its faked, not real, imagined, psychosomatic, conversion disorder, etc.  

You have evidence-based proof that you have lesions and black holes in your T1.  You've been diagnosed with MS.  Not possible or probable. YOU HAVE IT.

Do not fret, in this medical world of ours, we encounter a few doosies. I have myself.  

Find a doctor that is worthy of your trust and plan of care in regard to your health issues.

Lisa

[opie74]

I would never tell a new physician that I had ever seen this doc.  Send them an official letter saying that you contest what is in the rechords and that you want it noted in your file that you think that the Dx is incorrect.

[cp354]

Wow! Hard to believe that it's been a little over a year since that Neuro exam. I was DXed with MS in 2007. I had never been seen by a specialist and was having issues with my walking speed slowing, gait probs, weird sensory stuff in my legs and limb weakness.
Unfortunately, That exam ended up being more destructive than I ever could have imagined. The MS Specialist that I saw, wrote in my medical record that my balance problems appear non-organic, that my gait exam appeared to be fake because I walk without swing my arms. He used the phrase astasia abasia. I googled it yesterday.  Funny-I wasn't lurching around, almost falling, I walked cautiously (due to having fallen during exams in the past) and my speed had increassed 3 secocnds from my prior exam with my own neuro 3 months earlier.  My strength exam, he also interpreted as fake, calling it  "give way weakness."
He sent me to a Conversion Disorder Psychiatrist for an Eval...supposedly for PTSD (which I do have). It was a short visit, as I have no interest in Psychiatric drugs  and was simply NOT faking my tests.  I ended up with the Psychiatrist confirming the PTSD, the Neuro adding GAD and Depression onto my file (I have neither of these).  The only reason I made the appointment with the specialist in the first place was my alarm at my walking speed slowing down so abruptly, weakness and scary issues with my legs when I walk (not really sensing where my legs are in spacial context).  My concern was invalidated and he refused to discuss my legs/walking during my followup, without telling me why.  I only discovered all of the "faking it" stuff a few weeks ago when I had my records sent to me.  My concerns with my legs will now never be taken seriously.  A year later I am still having difficulties with the same issues, although the weakness has vastly improved. I am afraid to ever take another Neuro Exam or see a Neurologist and question the benefit of even bothering. Looking back, I wonder why it felt so important to get any answers in the first place.  

[RedFlame]

it's a bummer anyway you look at it.  Try not to be afraid of it, I would go through with it and voice your concern with the psychiatrist or psychologist.  I know it's a huge blow when they say "non-organic".  I have extensive neuropathy and they can't find the cause so I guess that would be non-organic too.

hand in there

Red

[COBOB]

As we were discussing in another thread, symptoms are what a patient states they feel or experience (a very subjective thing.)  If the doctor has nothing to objectively demonstrate that  symptom, they may call it non-organic.  I hate that term.  In another thread, we were talking about muscle weakness.  

There are several problems with this symptom.  First off, MS is a disease of the central nervous system, not the muscles.  So the doctor exams you arm or leg and notes that the muscles are toned and seem appropriate in mass.  The problem may be that the signal to tell the muscle to contract fully never makes it out of the brain or it may not have the correct timing, etc.  The muscle may be fine, but the signal generator (the brain) is not working.  Muscle organ good - brain bad, but I can't examine the brain, so I say non-organic.  

The brain can cause muscle to not contract correctly or in a coordinated fashion.  The sensory and position sensors may not provide feedback to the brain to tell it where your lib is, etc.  They are all organic (part of your body),  but there is a lack of clinical signs to support any linkage of disease to the symptom.

Most of the time, medical people (at least in the US) use non-organic (not related to an organ) to mean "A mental health consult should be requested."  That's fine.  They ought to just say it.   If there is no mental heath issues, then we need to start looking at the organ systems again.

Bob

[jensequitur]

Personally, it sounds to me as if he is saying it's psychosomatic.  With black holes on your T1 films, I have to wonder if he ever saw the films before making his analysis.

I would ask him if he's seen the MRI results, and still thinks it's non-organic.  I've had similar experiences.  My legs are a problem, as well as my back, and they're often weak and jello-y.  
  Of course, my problems are because of the lesions in my spine.

[supermum_ms]

Non-organic findings do not necessarily mean conversion, somatoform - making it up, faking it etc. but it can mean that too. EG a patient says I feel like i've got an elastic band around my ankle, the dr is unable to duplicate the response the patient is stating, there is no organic damage to explain this sx but in this example the sx is highly suggestive of peripheral neuropathy and warrants further testing. Dr's finding would be non-organic which wouldn't mean the patient is faking it etc but that the sx is real and there is no physical   cause to explain the sx. Does that make sense?

Weakness etc is a gray area, because it can be from psychological or from a disease such as MS. If the weakness was caused by a physiological cause, on testing the muscle damage is usually reproducible when tested, and has organic causation. When the sx is not reproducible, and therefore no physical cause is identified then its classed as non-organic because there isn't anything physcially wrong to explain it.

I wouldn't necessarily interpret the report to mean he thought you were faking, just that you did have 'give way weakness' which he suspects is causing your balance and weakness probs. Also that he found no physical (organic) cause to account for the give way weakness he observed, and therefore of non-organic causation.

I would ask him directly what the term 'non-organic' means if you are at all uncomfortable.

Cheers..........JJ