David1949

I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7…[Read more]

Ashley,

The 19th works for me! Thank you for trying to accommodate.  I just got released from hospital with pneumonia.

LEMS and pneumonia are not a pretty pair. 5 days later and lots of IV antibiotics and steroids, and hard work from Respiratory Therapist, and a loving spouse got me through. I was under the care of an amazing hospitalist who is…[Read more]

I think the key is getting a referral to a doctor affiliated with an Autonomic Nervous System Lab. I was fortunate that my neurologist was part of the Neurology Department at a large teaching hospital that had such a lab and doctor who specialized in autonomic nervous system diagnoses. He has since closed up shop and moved to the Cleveland Clinic.…[Read more]

July 12th at 5 PM works for me.

David

Ashley,

Surgery recovery would be smooth if I could only get in  a regular sleep pattern. Between the hard neck brace, CPAP and insomnia, sleep is not my friend right now. I had IVIG infusion today and slept there for over an hour, which is most irregular for me. There is no pain in my neck right now. Still having nerve issues in right arm.…[Read more]

Great news for you. I will be interested to see how your visit goes. I had requested my LEMS medical records from Sentara, to send to VCU, but they sent me over 1000 pages of repetitive information and didn’t send me what I needed. After my body settles down after the recent cervical spine surgery I will try gathering records from Sentara My…[Read more]

I have had 3 full moderna shots and one booster. I am due for another booster but can’t get it until I can ride in car again after cervical spine surgery last week.

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…[Read more]

Ashley,
Here is the doctor in Richmond … actually in Short Pump. I believe he is the same one Dale is referring too. There is a whole big department at John Hopkins in Baltimore.
David

Kelly Gwathmey, MD
VCU Health
11958 W Broad Street
Henrico, VA 23233
804-360-4669

vcuhealth.org

Ashley,
I may be fighting the same problem with a neurologist in Virginia Beach. I have been fighting him since August. Once
Dr. C left I found a neurologist locally because I didn’t feel comfortable using telehealth since I have had emergencies during IVIG several times.
I have had 3 appointments. Since the first one it has been a struggle. My…[Read more]

You’re welcome.

Price,

This link is to a CDC update on the 4th dose for immune compromised patients.

It is dated February 11, 2022.

https://www.cdc.gov/vaccines/covid-19/clinical-considerations/covid-19-vaccines-us.html#considerations-covid19-vax-booster

All, the link below is to an article from the Associated Press in today’s newspaper where I live. Very informative.  I am exploring Evusheld with my physician.

David

http://digitaledition.pilotonline.com/infinity/article_share.aspx?guid=26ea78a7-d8a6-4b77-a20a-d04ef49299b1

Price,

I have multiple mobility aids so I can still get around. Short distances, quad cane. Medium distances, I use my drive walker. Longer distances, I use my battery operated scooter. We are headed to Colonial Williamsburg next week for an outing and I will use whatever mobility aid I need to get out and about.

David

I live in Suffolk, Virginia and was diagnosed with LEMS in 2014.

I was 64 when I received my diagnosis. I had a stroke in late 2013. My neurologist was concerned that I was having issues with leg weakness afterwards. Testing started in March, 2014 and was diagnosed in August, 2014.  Lucky to have an Autonomic Nervous System Lab nearby.

I was diagnosed in 2014.