[David1949]

Heather,

Sorry to hear all that you are going through. I had similar experience with a total knee replacement. I needed IV antibiotics for 7 weeks because there was infection in the bones in my surrounding my knee.

By all means, go to the physical rehab hospital. They will be able to take care of all your physical needs, IV antibiotics, and PT / OT therapies.

I know a caretaker for your daughter is another need but rely on a relative or the parent of a close friend to take her in while you go through rehab.

David M., Suffolk, VA

[David1949]

We have found that Glyoxide works for mouth sores. Used to purchase at Walmart now we only find on line (we shop at Amazon).

[David1949]

My neurologist is ready to dismiss my LEMS diagnosis because of negative test results from Mayo Clinic. He did refer me for a consult and SFEMG scheduled for April 26th.

I sent him the articles that Ashley referenced in this thread and my neurologist responded, “not true in my experience”

[David1949]

I have strange reactions to adhesives. I had a 2nd cervical fusion on December 13th. My Neurosurgeon covered the incision with a thin film dressing called tegaderm. I had a severe allergic reaction to include burning  itching and swelling. Three months later I still get a severe itch if there is any tag in my shirt rubbing against the site. The rectangle area that was covered by tegaderm is still red. I was treated with 2 courses of antibiotics, 1 course of steroids and steroid ointment. I have been a mess since the surgery.

[David1949]

<p style=”text-align: left;”>Does anyone know if being on IVIG infusions would affect the results of a “high frequency nerve stimulation” EMG?</p>
Posted by David

[David1949]

Don’t have one. I am a very hard stick because after 8 + years of IVIG there is alit of scar tissue in the veins in my hand. They are now using the ultrasound to locate a vein in my forearm and I leave it in for two days.

[David1949]

Thank you Ashley. These two articles are very helpful for my Advocacy. I’ll keep everyone posted on what happens.

[David1949]

I am type N.

Ashley,

In reference to this comment, “I have not been re-tested since then as I was told IVIG skews levels and can cause a false negative”, do you know if there is documentation on the fact that being on IVIG could give a false negative?
<p style=”text-align: left;”>My neurologist has tested me twice recently and and both test were negative for LEMS. I would like to show him the information that says being on IVIG can skew the results.</p>
David

[David1949]

Thanks price.

We will be going to UNC Medical Center at the end of January for an appointment at the swallow center there. We will be headed to the University of Virginia Medical Center in the near future for a specialized EMG.

These two will be the first time we stayed away from home since summer, 2019.

Covid permitting, we will be VACATIONING in the Shenandoah Mts. In May at Massanutten Resort. Keeping fingers crossed. The new Covid strain is on the upswing in Virginia.

[David1949]

Debbie,

I have been living with LEMS since 2014 when I was 1st diagnosed. You have received great answers to your list of questions. I just wanted to add my encouragement and support to you. Price recently told me to trust my neurologist. I am and I will. I will keep you in my thoughts and prayers.

David

[David1949]

I am most proud that my wife, Doris, and I celebrated our 50th anniversary on April 1st. Talk about time flying. Although our celebration was limited by the pandemic, we did the best we could.

In 2023, we will be venturing out, as Covid’s presence allows. We have travel reservations in May. Pray we can get away from the home we love.

[David1949]

Merry Christmas all. My LEMS gift list is small (I don’t need or want much). I wish for a doctor that tells me what is it that I have since my current Dr. says I don’t have LEMS and is tapering me off of IVIG therapy. I have an appointment January 3rd and I hope my wish is granted. In three months I have more than halfed my dosage. Please keep your fingers crossed for me. I just don’t have the energy to switch doctors.

Thank you, David

[David1949]

I got my high dose Flu vaccine in mid October and my 6th covid vaccine administration in early November.  Fortunately,  I don’t get horrible side effects from either vaccine.

As long as someone offers me a Flu or Covid vaccine or booster, I will step up and be happy to get mine

[David1949]

LEMS voice would be one of the earliest symptoms I can remember of my LEMS diagnosis. Before I knew anything about LEMS, I knew that some of my vocal patterns were not normal.  Now the answer to what was wrong with my voice is connected my diagnosis. It is usually an early sign of a flair up. My diaphragm is the first muscle to show the effects of LEMS. Raspy, small, weak are words that all describe my LEMS voice.

[David1949]

My wife, Doris, is my caretaker. She utilizes many of the skills and knowledge  she gathered as a Hospital Clinical Social Worker.

[David1949]

I put my meds together once a week for the entire week. I take my meds with breakfast, before dinner and before bed. This has been my routine for years.

[David1949]

My father had another neurological disorder – Charcott Marie Tooth disorder. It was disabling to the point he was confined to a wheelchair. We were estranged so I don’t have much detail of his illness.

[David1949]

Ashley,

I participated in the trials of firdapse but had to quit because when I had IVIG with the trial meds I retained huge amounts of fluid and ended in the ER. Is Firdspse different than the dap3 that was used in trials in 2017 in this area?

David

[David1949]

Ashley,

This is great news. I’m glad the switch was a good one. I may make the same move after my late September appointment.

David

[David1949]

Thank you for the information Heather. I have communicated with my neurologist in reference to these comments and I hope it makes an impression on him.

[David1949]

Dorothy,

For my constipation, I take generic colace 3 times a day and I am as regular as can be. (I purchase the Member’s Mark stool softener at Sam’s Club or Amazon. It is a good value.)

David

[David1949]

Finally feeling better. Still having Home Health PT and get winded whenever I do my exercises or can get out in walk. The cough is gone, my O2 sats are normal and I am not grey looking! 🙂

Thanks for checking on me.

[David1949]

Ashley,

When I bought mine two summers ago I bought a product by Borka. It doesn’t seem to be currently available. This is the amazon link to a very similar product-

USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black).  Brand – Eonthry.

https://www.amazon.com/Portable-Electric-Conditioner-Cooling-Updates/dp/B09WZYNSYL/ref=asc_df_B09WZYNSYL/?tag=hyprod-20&linkCode=df0&hvadid=598287967324&hvpos=&hvnetw=g&hvrand=17392812355605554537&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9008526&hvtargid=pla-1658355984160&th=1

[David1949]

Ashley,

I am very pleased with the one I got two summers ago:
<h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>Hands Free Neck Fan, BORKA Portable 360°Cooling Hanging Neck Fan USB Rechargeable Personal Mini Wearable Air Conditioner Fan.</span></h1>
It isn”t available on amazon currently but it may be elsewhere.

This is the closest I found to it and it is available on Amazon:
<div id=”title_feature_div” class=”celwidget” data-feature-name=”title” data-csa-c-id=”9evthu-ckdznj-9aqvks-6stcd3″ data-cel-widget=”title_feature_div”>
<div id=”titleSection” class=”a-section a-spacing-none”>
<h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black)</span><span id=”titleEDPPlaceHolder”></span></h1>
</div>
</div>
<div id=”bylineInfo_feature_div” class=”celwidget” data-feature-name=”bylineInfo” data-csa-c-id=”bigi5c-n5pmii-o58cdh-nac0c0″ data-cel-widget=”bylineInfo_feature_div”>
<div class=”a-section a-spacing-none”>Brand: Eonthry</div>
</div>