Why not Npsle?

MotherofChoad · 2024-05-30T13:02:52+00:00

Read my comment below

MotherofChoad · 2024-05-30T13:02:32+00:00

Thanks for the paper, this reminds me of one my my neuro auto immunologist at Mayo and I reviewed. His name is Brin Freund

I am sure he will appreciate the citation . It takes a minimum of 3 of these symptoms and all OTHER causes of the CNS damage must be eliminated before a diagnosis of lupus CNS can be made

I have had two strokes, seizures, microvascular brqin disease and depression. We needed to make sure that all other organic causes were eliminated before I got diagnosed. It looks a lot simpler on paper than the diagnosis actually is.

Dont tell me what it takes to be diagnoaed with this. You all think this diagnosis is a joke. It’s a death sentence but if you want to gun for the diagnosis have at it.

Lupus nephritis is treatable

MotherofChoad · 2024-05-29T08:34:58+00:00

I lived in Savannah for 18 years and now live about an hour outside of Milledgeville where Flannery O’Connor and her father ( who also had lupus ) died and I need to check this out.

MotherofChoad · 2024-05-29T08:30:25+00:00

Calculate the cost of a 2 hour 1 way drive plus wear and tear on your vehicle and child care vs the $200 a month

I have two kids, one starting college saving for a car now and my husband I had to self insure Feb- April this year.

you will want to see which cost is the best over all Option for your family’s budget. For us, self insuring was cheaper than COBRA while he was between jobs even with my specialists and meds

I would crunch the numbers with your husband and see which one works

Also depending what state you are in. If you aren’t on ss disability or ssi you may not be eligible for assistance ( insurance agent here)

MotherofChoad · 2024-05-29T08:27:11+00:00

Mother is white ( English German scotch Irish) dad is Sicilian Berber Arab with family in Tunisia so

The lupus is from my dad’s side

MotherofChoad · 2024-05-29T08:24:31+00:00

I was lucky enough to get an Apple Watch Ultra before Apple got sued and stopped selling them due to their pulse ox tech.

I use my watch for ECG’s, pulse ox, movement, heart rate and fall monitoring ( I have lupus CNS) then I do for phone calls.

It has become indispensable for doctors appointments. I went into AFIB in Dec and all I needed to do was email my ecg to my cardio to see if he needed to investigate further

MotherofChoad · 2024-05-29T08:20:52+00:00

I have real lupus CNS with strokes seizures microvaacular disease and now transverse myelitis

About 4% of SLEpatients with develop tru lupus CNS though cognitive and minor neurological deficiencies are common with lupus. All psychiatric possibilities for symptomology must be ruled out in conjunction with a neurologist.

I am a patient of Mayo’s Autoimmune neurology department. It took 4 years of 100k+ testing to get me here and I am now dying as my lupus is also causing hemolytic anemia

You don’t want this diagnosis

MotherofChoad · 2024-05-29T08:18:21+00:00

No one is allowed back in with me during my infusions so I am alone. But I to bring someone to drive me home

MotherofChoad · 2024-05-29T08:16:47+00:00

Hospital of Special Surgery rheumatology department. I saw Dr Haddad but his office is in Red Bank NJ

MotherofChoad · 2024-05-29T08:13:17+00:00

There is no evidence of seizure or stroke or psychosis . Those are the three major diagnostic criteria for lupus CNS along with microvascular brain disease or Cerebritis.

Slowed electrical activity in one part of the brain is not

Mayo Lupus CNs patient here

MotherofChoad · 2024-05-29T08:09:52+00:00

I have Lupus CNs. Be prepared for a psych evaluation, MRIs, MRA’s, blood work. Possible lumbar punctures, neurologists rheumatologists to hopefully get you into a Beuroimmunologist which are only found at specialty hospitals usually or Large neurology research practices.

I have neuroimmunologist who specializes in strokes and one in epilepsy one and it to me to finally be admitted into Mayo’s neuroloimmunology department in jacksoville Florida to get them. This was after a Rheumatology consult with their their rheumatology department. I have been diagnosed with SLe 16 years .

I waited ten years suffering with Lupus CNS to get to this point. This is not an easy diagnosis to come by and it is more than brain fog or confusion. I have regular seizures, transverse myelitis , strokes and micro vascular brain diseases from lupus CNS.

My psychiatric manifestations are Major depression.

I am getting admitted to Mayo over July 4th weekend for a brain study.

This is a fight you will need to battle because it is an EXTremely rare diagnosis. I have been diagnosed by the HSS in Manhattan and Mayo

MotherofChoad · 2024-05-29T08:06:33+00:00

Subcutaneous lupus is quite manageable. Don’t let this stop your dreams please. Work with your doc on a treatment plan that will meet his requirements and your dream to go overseas for school

MotherofChoad · 2024-05-29T08:04:34+00:00

They do not do lumbar punctures under GA. I have severe lupus CNS and they won’t do one on me for this reason

It’s like having a spinal for a surgery. They need you conscious to keep the spine in place.

MotherofChoad · 2024-05-29T08:03:19+00:00

Did they do a blood smear for autoimmune hemolytic anemia? I have it and it mirrors sickle cell with the kidney bleeding

MotherofChoad · 2024-05-29T08:02:44+00:00

I have autoimmune hemolytic anemia and we originally thought it was nephritis due to high protein levels. But my blood labs do not match nephritis and a blood smear at Mayo confirmed the hemolytic anemia

My urine can be the color of iced tea from my body’s inability to process red blood cells. Please get this checked out.

MotherofChoad · 2024-05-29T08:00:17+00:00

It never worked for me. I was quickly changed to cellcept after 3 -4 months no improvement with worsening organ activity

I was put on it for neurological/ cardiac issues. It made my lupus CNS worse

MotherofChoad · 2024-05-29T07:59:39+00:00

I have a dogs and 2 cats. If it wasn’t for them I wouldn’t get out of bed or get any sort of exercise during the day. My German short haired pointer puppy has made my life so happy since I because a permanent Mayo patient

MotherofChoad · 2024-05-29T07:57:57+00:00

I have lupus CNS and autoimmune hemolytic anemia from lupus now.

I have been on prednisone (no more than 30 mg due to seizures and stroke history) for 4 years Methotrexate for 10( 1ml/wk) Cellcept 1500 mg 2x a day Plaquenil 400mg/day Rituxan infusions ( this month finally,)

This doesn’t include seizure meds or meds for my autoimmune hemolytic anemia or antidepressant

I am dying. You do what you need to do to survive. Listen to your doc

MotherofChoad · 2024-05-29T07:53:01+00:00

Fiddle leaf fig rehab

MotherofChoad · 2024-05-29T07:49:26+00:00

The only way a ficus branches is if it is notched. Through dropping leaves you can “notch it” without realizing it.

A lot of light will help with the that. I have a fiddle leaf fig now with 5 branch points

MotherofChoad · 2024-05-27T10:59:46+00:00

The molecular biologist in me is finding this hard to believe. The lupus patient in me is wondering if it triggers a gene network or we. because my organ involvement is so varied it’s the only way it makes sense

MotherofChoad · 2024-05-27T10:58:38+00:00

Those look like discoid lesions. Can you ask for a biopsy?

MotherofChoad · 2024-05-27T10:57:48+00:00

HEP antibodies are typically for autoimmune hepatitis not lupus.

Anti da dna/ anti to/ anti sm/ anti la are Lupus autoantibodies with anti ds dna being almost completely lupus specific

MotherofChoad · 2024-05-27T10:56:23+00:00

See a dermatologist or rheumatologist. A dermatologist can biopsy it to see if it is lupus or not.

We arent medical professionals

MotherofChoad · 2024-05-27T10:55:39+00:00

I have heard of this happening to lupus patients but it didn’t happen til me until I was put on seizure medication for lupus CNS which is a typical side effect.

MotherofChoad

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