David1949
Forum Replies Created
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<p style=”text-align: left;”>I rely on a variety of mobility aids for my own safety and for my wife’s well being. I have a quad cane and go up to a rollator. I recently purchased a stand up rollator with arm pads because my posture is horrible. If I am going longer distances I use a mobility scooter. I do not own a wheelchair but we have rented one on occasion. In airports, I move about in the airline courtesy carrs. I am not at all embarrassed to use them. They are my friends that “take me out for a walk” and allow me to do more with my LEMS. Now, if the humidity wouldn’t just go away!</p>
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Ashley,
I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.
David
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Ashley,
I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.
David
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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 months of testing that began my LEMS journey.
My only solution is to hibernate in AC in the summer months. I look forward to additional responses in this thread.
David
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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 trained in pulmonary and critical care medicine. Onward to more recovery from home.
David
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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. From referral to diagnosis was 7 months.
Google Where are Autonomic Nervous System Labs?
David
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July 12th at 5 PM works for me.
David
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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. Thanks for asking.
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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 Chart.
Dr. G has backed off from the not LEMS gibberish at least until I recover from surgery.
Good Luck with new neurologist.
David
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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.
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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.
David
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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.
DavidKelly Gwathmey, MD
VCU Health
11958 W Broad Street
Henrico, VA 23233
804-360-4669vcuhealth.org
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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 diagnosis of LEMS is not accurate, my treatment of IVIG is not accurate and all I hear is we have to follow a different path. Until June I am safe because the MRIs he ordered, looking for something else, showed needed Neurosurgeon attention and ruled out my leg issues being from issues in my spine. I too am looking for a new neurologist. Did Dr. C’s office give you a list of Drs? I may look at VCU – MCV. There is a female Dr. There that may be helpful.
I will keep you posted if I find anyone promising.
David -
You’re welcome.
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Price,
This link is to a CDC update on the 4th dose for immune compromised patients.
It is dated February 11, 2022.
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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
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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
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I live in Suffolk, Virginia and was diagnosed with LEMS in 2014.
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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.
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I was diagnosed in 2014.
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Ashley … see response below to DC. I have been successful with mine for three summers.
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This is vary similar to the one I have used for 2 years.
It is available on Amazon (prime day sale today).
USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black). Brand – Eonthry.
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Thank you Ashley. I had infusion today and again tomorrow. Retaining extra fluid because of recovery from pneumonia. Life is improving overall.
David
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Thank you Ashley. I had infusion today and again tomorrow. Retaining extra fluid because of recovery from pneumonia. Life is improving overall.
David