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    • #20240
      Ashley Gregory
      Keymaster

      Hello LEMS friends! 

      I talked briefly about my experience with my new neurologist last month. If you missed my topic, you can check it out here

      To recap, it went really well and I was impressed. 

      I had some findings that I found interesting!

       

      One of them was the fact that I had decreased reflexes (even while on IVIG), I was not on firdapse at the time of this test. 

       

      My results were as follows: 

      MSRs (Muscle Stretch Reflexes) :

      RIGHT: 

      Bicep 2+ / Brach 2+ / Patellar 2 / Achilles 1

      LEFT: 

      Bicep 2+ / Brach 2+ / Patellar 2 / Achilles 1

      Here’s what the MSR numbers mean and what is considered “Normal” is 2+.

      Click here to read more about them! 

      0 Absent reflex

      No reflex, even with distracting maneuvers.

      1+ Slight reflex

      Reflex is definitely present, but diminished; possibly pathologic, depending on the clinical situation.

      2+ Typical reflex

      This is the average normal reflex, but 1+ and 3+ reflexes can also potentially be normal, depending on the clinical situation.

      3+ Brisk reflex

      Very brisk reflex; possibly pathologic, depending on the clinical situation.

      4+ Very hyperactive reflex
      Clearly pathologically hyperactive; 4+ in ankles implies that clonus is also present.

      It’s interesting to see that the decreased sensation of my lower limbs correlates with my reflexes. I have small fiber neuropathy and very decreased sensation from my knees down and almost absent at the foot.

      I will be going back to visit my new neurologist on October 4th, and I’m sure they will likely retest since I have now been on Firdapse for about two months!

      I am really interested to see if there are any changes. I was also told we would repeat my TUG testing again as well. I wrote a previous topic you can find here about my insurance requiring the TUG test prior to approving my Firdapse.

      To me, it’s an interesting finding because it’s not something you normally see listed as a “sign or symptom” for LEMS! 

       

      Have you experienced or been told that you have decreased reflexes?

      Do you have decreased sensation or small fiber neuropathy as well?

       

      I will let you know later next month about my results on Firdapse after I see Dr. G.

    • #20259
      Roberta
      Participant

      Yes.  From the very beginning that was noted.  I have a little reflex in the arms but pretty much none in the lower extremities.
      My neurologist said that was one clue that made him think I had LENS.

    • #20262
      Ashley Gregory
      Keymaster

      Hey @bobbi-lynn-berry

      I think our decreased reflexes is another symptom that sets us aside from MG patients.

      I found a really interesting article about this!

      “In MG as in LEMS the afferent limb of the reflex ark is unaffected as is the efferent up until the neuromuscular junction. The explanation of preserved reflexes in MG is that the initial barrage arrives at a rested neuromuscular junction. The initial release of acetylcholine is larger than later in a train of impulses and this is sufficient to overcome any deficit in the number of acetylcholine receptors. Only brief transmission is needed to provide the mechanical response, and this occurs before fatigability can set in.” (Source: https://onlinelibrary.wiley.com/doi/abs/10.1002/mus.880180821

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