Viewing 4 reply threads
  • Author
    • #19878
      Ashley Gregory
      I’ve been stuck in what seems to be the longest flare ever for a few months now. I’m not sure what even brought it on, but it’s affected every aspect of my life

      My doctors don’t seem to have any suggestions and tell me it’s a “minor” flare that will pass. 

      I know stress is a HUGE trigger for my flares, and I’ve been dealing with a lot of that lately. 

      I took it upon myself to try to take control and decrease the inflammation in my body. 

      One of the things I’m working on is eating healthier: less sugar, fewer processed foods, more protein, etc.

      Before I was diagnosed with LEMS, my neurologist asked me to have a three-hour glucose tolerance test done, as my brother is a type 1 diabetic and has been for his entire life. 

      Blood sugar abnormalities can really set us off. If you have dysautonomia, you likely experience blood sugar abnormalities although you may not be aware.

      My glucose fasting test proved that this was an issue for me, my blood sugar dropped to 30 after the third hour.

      Has anyone else experienced this? The test itself is pretty easy.

    • #19885
      Price Wooldridge

      It’s discouraging when I hear a neurologist minimize flares and suggest it will just pass. My neurologist seems to not hear my reports of LEMS weakness, which is very discouraging.

      I’ve been diagnosed diabetic since the 90’s and been down the long road. Poor glucose control is a MAJOR problem. Dropping to a blood sugar of 30 is a major problem. Those levels are unconsciousness producing. I’ve awakened on the floor with firemen and paramedics standing over me, laying on my bedroom floor, comatose from a low blood sugar. I was very lucky my son found me and knew to call 911.

      I’ve never done that blood glucose test you mention, but have continuous glucose charting which show wild sugar fluctuations, especially overnight, if my autonomic nervous system is misbehaving. The whole reason for continuous glucose monitoring (besides better control) is to wake up to an alarm and not flop onto the floor waking up with paramedics standing over you…if you wake up.

      I’m glad you’re being proactive with your diet and trying to manage stress. Your blood glucose levels need diligent monitoring, perhaps with a test meter and strips provided by your insurance.

    • #19893
      Wanda Grischkowsky

      I have had fluctuating glucose levels for years now. Diagnosed with Type 2 diabetes initially, I was put on oral medication but experienced extremely low glucose. So, I had to stop taking diabetes medications.

      Recently my glucose started increasing overnight only. My endocrinologist did a lab test which I tested positive for latent autoimmune type 1 diabetes. Sadly I am now on insulin.

      Too many conditions at one time…. now about to start Azathioprine (Imuran) due to worsening weakness and fatigue.

    • #19896
      Ashley Gregory


      I’m glad that you are diligent with your continuous glucose monitoring. Luckily, I’m well aware of diabetes care because my younger brother was born with Type 1 DM and I cared for him growing up. I also recognize the symptoms I have when I have a low and know to have some sugar followed by protein! Thanks for your tips!


      I’m sorry to hear that you are on insulin now. I know what its like to juggle multiple conditions and it can definitely be overwhelming especially if you can’t determine what symptoms are from which disease. It gets messy fast. I’m glad your endocrinologist is keeping an eye on you.

      Let me know how the Imuran goes. I’ll check in with you in a month or so. That might be the next road for me too.


    • #19903

      I am pre-diabetic and my internal medicine doc and cardiologist follow my numbers closely. With a diabetic Mom (deceased) and sister and brother with diabetes, I guess my time is coming.

      Side note … had neurosurgery today to replace 2 discs in cervical spine and fused two vertebrae.  Had horrible time with breathing and swallowing after surgery. Here I am in ICU. Breathing much better after CPAP,  to Bipap, to high flow breathing treatments that finally did the trick. In ICU under observation for night then to spine unit tomorrow.

      Ashley, At SPAH if you want to stop in.


      • #19908
        Price Wooldridge

        @dpmitnick Hang in the with the diabetes monitoring and keep a watch. My best advice is think about moving your diet to a diabetic friendly diet, lower in carbs. The sooner the better.

        Glad you’ve gotten past that surgery and that you will throw yourself into the rehab necessary to get you through this. It’s so great to hear that BiPap and some good breathing treatments got your respiratory function back up. I hope you’re out of the ICU by the time you read this!

Viewing 4 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen


We're not around right now. But you can send us an email and we'll get back to you, asap.


Log in with your credentials


Forgot your details?

Create Account