Tuesday, September 27, 2022

Tuesday, September 27th, 2022

Recovery, second time around ...


So, a day ago, my neurologist explained to me that I have Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) - a rare condition that arises when the myelin sheaths around certain peripheral nerves become damaged. This causes muscle weakness and impaired motor control. It is a form of GBS ( Guillain-Barré syndrome )

In some cases, you can treat CIDP. By controlling inflammation, it may be possible to slow or stop the progression of the condition and alleviate symptoms. Without treatment, CIDP can lead to permanent neurological damage.

CIDP occurs due to damage to myelin. Myelin is the insulating layer of tissue that surrounds nerve cells. It helps ensure that signals from the brain are rapidly transmitted to the proper places in the body.

When myelin becomes damaged or destroyed, it can lead to problems with communication between the brain and the body.

With CIDP, there is chronic demyelination of areas of the peripheral nerves. This can be constant, or it can periodically worsen and improve.

This inflammation damages peripheral nerves, but not the brain or spinal cord. While CIDP is sometimes associated with inflammatory or autoimmune conditions, medical professionals do not know the exact cause.

Conditions that may contribute to the development of CIDP include:

  • autoimmune conditions, which are conditions in which the immune system attacks healthy tissue
  • inflammatory bowel disease, including ulcerative colitis and Crohn’s disease
  • acquired immunodeficiencies, such as HIV infection
  • thyrotoxicosis, which is an excess of thyroid hormone in the body
  • systemic lupus erythematosus, which is the most common type of lupus
  • lymphoma and monoclonal gammopathy of undetermined significance, a condition that causes elevated levels of a certain protein in your blood
  • POEMS syndrome, a rare blood disorder that affects multiple areas of the body, including the nervous system
  • cholangiocarcinoma, which is cancer of the bile ducts
  • melanoma, which is the most serious type of skin cancer
  • carcinoma, a type of cancer that can cause a complication of the nervous system, leading to CIDP
  • graft-versus-host disease, a condition in which donor cells attack recipient tissue after a transplant

Viruses that may occur before an episode of CIDP include:

  • influenza
  • HIV
  • hepatitis A, B, and C
  • Mycoplasma pneumoniae, which causes lung infection
  • Epstein-Barr virus
  • Campylobacter jejuni, which causes food poisoning
  • cytomegalovirus

Other possible risk factors for CIDP include:

  • being in the postpartum period following pregnancy
  • having had recent surgery
  • having had a solid organ or bone marrow transplantation
  • getting vaccinations for swine influenza, influenza, meningococcus, rabies, hepatitis B, and tetanus toxoid

Treatment for CIDP focuses on controlling symptoms and slowing the progression of the condition. There are numerous treatment options available, and up to 80% of people respond to one or more CIDP therapies that modify the immune system.

Treatments for CIDP include:

  • corticosteroids, such as prednisone and prednisolone, to reduce inflammation
  • immunosuppressant drugs to prevent the immune system from attacking the myelin sheath
  • IV immunoglobulin therapy
  • plasma exchange for short-term improvement of symptoms
  • physical therapy to help with motor ability

Friday, September 09, 2022

Starting around September 1st - I am experiencing a setback at the moment, hoping AIDP is what I have ( a form of Guillain–Barré Syndrome ) and not CIPD. With AIPD, you get bit, the after IVIG and Plasmapheresis you just need to recover ( Myelin needs to grow back - normally 6 to 18 months for full recovery )

They are treating my sudden weakness from knee down - which was not present at all in Feb when I was first admitted to the hospital. I was there a month and a half, unable to move my hips and thighs. But by Late July - I was about 80% back functioning on left and 85% back to normal on the right.

In August - I was only using the cane for the stairs, walking everywhere without a cane - but now back to using the walker full time.

Because my Left leg was weaker than my right,I was walking like John Wayne, which really aggravated my Sacroiliac joint on my left side, which then developed into sciatica. Pain in the mornings especially are intense.

I fell September 2nd and poked a hole in the wall going up stairs. I am now confined to staying downstairs.

 

Sept 6th Wednesday – visited my neurologist Dr. Mi she prescribed Methylprednisolone MG Dosepk - 6 day regimen. UGH. Like any heavy steroid ( Prednisone like ) it reduces inflammation - but AMPS YOU UP. So - not sleeping well because of the Med - will be happy when this is DONE. 

She also prescribed I do another round of IVIG ( 4 infusions, either outpatient or in ) which we will find out Monday, Sept 12 ( depends on what the insurance provider accepts )

I am part Viking and mostly Neanderthal ( you can tell by how furry I am ) - so, I will beat this !

Tuesday, July 26, 2022

July 25th

STAIRS !
I can climb stairs and even take a shower standing up now !



Saturday, July 16, 2022

 July 14th, 2022

FINALLY !!!!

Still a little bit wobbly, but "LOOK MA, NO HANDS !"



Monday, June 27, 2022

June 23, 2022

There was a time when I 
could not even lift my feet into the pedals, 
the staff at Physical Therapy had to do that for me.

And even with no resistance, 
I could only muster like 4 steps a min.



Now I am at 3.5 resistance and can do 100 steps per min - 
I can do 8 mins then I start slowing 
( they ask me to do 5 min, but I always do more ! )


Thursday, June 16, 2022

June 15th, 2022

I am now able to walk with a CANE !

SO HAPPY !




Took and Uber to visit my direct Tony Tarpey for dinner at the Golden Bull in Santa Monica, CA


Monday, June 06, 2022

June 6th 2022.

I can actually walk while holding my walker off the ground. Well, okay, not really walking well, kinda hobbling, but this is a VAST improvement since my last blog post !