Author Topic: My daughter with sjogren's as well?  (Read 1448 times)

A Mom on Spin

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My daughter with sjogren's as well?
« on: December 02, 2015, 07:21:36 AM »
Just recently returned from a visit to John's Hopkins neurology with my 23-old daughter with a shocker of a most-likely diagnosis (still needs to be firmed up by test results.). She has been sick for close to two years and this is the fourth neurologist who has evaluated her.

The first local neurologist  found nothing wrong, the 2nd (well respected practice affiliated with Big NYC hospital) diagnosed her with a mild case of Guillain Barre, prescribed a limited series of IvIG treatments and told us to wait out her recovery.  The 3rd (local) neurologist told us she had pinched nerves in her cervical and lumbar spine.

In the mean time she continued to deteriorate - still had the numbness, tingling, pain,and burning in her legs, arms and back but some bladder, bowel, visual, heart rate problems were bothering her as well. Add  this to my own Sjogren's with peripheral neuropathy (and another daughter with lupus) and I was literally at my wits end!

Low and behold, the Hopkins neurologist's initial diagnosis is of a more rare form of small fiber peripheral neuropathy not manifesting itself in the typical "stocking and glove" fashion.  This neuropathy is not "length dependent" and so is affecting her back and neck as well as arms and legs.   Not only is it affecting her sensory nerve function but autonomic nerve function as well, causing heart rate problems, bladder incontinence, temperature regulation, lack of sweating, etc.

The skin punch biopsies done there will confirm this diagnosis,  but the search is on for the underlying cause which - with our family history - is most likely autoimmune in nature,with the most likely culprit being Sjogren's!  If so, she is sero-negative, although a few of her ANA titers have been slightly elevated in the past.   They've scheduled a lip biopsy for early next year.

Even though I have fought my own battles getting a diagnosis of small fiber neuropathy, I never dreamt it could cover such a wide area of her body.  I was also aware of the fact that neurological symptoms of Sjogren's could show up years in advance of sicca symptoms, but never applied that to my thoughts about my own daughter's illness. Needless to say, I'm a bit overwhelmed, saddened, and somehow guilt-ridden at this time.  I worry that if her neurological symptoms are this advanced at this age, she could ultimately develop a whopping case of Sjogren's for sure.

I am grateful for those doctors at John's Hopkins and am confident they will treat her in the best way possible.

I am also now a big believer in 4th opinions!

Liz
www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

ohiolady

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Re: My daughter with sjogren's as well?
« Reply #1 on: December 02, 2015, 10:59:35 AM »
I am so very sorry to hear your family has been hit so hard.  You probably remember my post about my two daughters, one being diagnosed with Lupus and the other waiting on tests.

I hope they will be able to treat her and she will have good quality of life.

Sending you a big hug and prayers for your family.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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SunshineDaydream

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Re: My daughter with sjogren's as well?
« Reply #2 on: December 02, 2015, 11:06:52 AM »
Wow, AMOS and ohiolady, you and your daughters have a lot going on. I hope the doctors come up with diagnoses and effective treatments soon.

One good thing, if there's any silver lining here, is that you can intra-family commiserate and understand each other. I know many with lupus and/or Sjogren's feel isolated and like nobody understands their experience.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Joe S.

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Re: My daughter with sjogren's as well?
« Reply #3 on: December 03, 2015, 06:11:04 AM »
Both of my daughters have auto immune challenges. My oldest recently blogged about her pain on Walks Within. I added a comment on first aid for chronic pain. She said I taught her well. I got thank you's from a few of her readers.

Part of auto immune disease is a genetic pre-disposition. AI runs strong in my fathers family. During family get togethers we talk about what we are doing that works for us.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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ohiolady

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Re: My daughter with sjogren's as well?
« Reply #4 on: December 03, 2015, 06:47:48 AM »
Liz,

Please don't feel guilty.  All families are faced with challenges and autoimmune is one of our challenges.  I have already given my daughters many tips on managing as I am sure you have.  We can be a support to each other.

Take good care of yourself while you navigate through the maze to find best treatment for  you all.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

aussie mum

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Re: My daughter with sjogren's as well?
« Reply #5 on: December 05, 2015, 12:03:45 PM »
I totally understand your situation. Long before I was actually diagnosed with anything, my daughter was diagnosed with SJS at 16 (but was having dry mouth symptoms for a few years prior) with the joys of the other conditions listed in my signature being diagnosed a year or so later.

We all live with the lottery of our genetics. Why did I get the "fat"genes, while my son got the "skinny"ones.  ;D
Seriously though, since my daughter's diagnosis I have found AI illnesses in both sides of my family. Lupus, Thyroid issues, Type I Diabetes. It just wasn't really discussed.

It is a roller coaster ride as a parent of a child with Chronic Illness. Firstly there's the relief of finally getting a diagnosis, then the parental guilt, then the counselor within you kicks in while you help your child through their roller coaster of emotions and then you become the ever alert parent on the search for the best treatment.

I also lived with an overwhelming guilt that I passed illness on to our child. My work could see that I was not coping and sent me for a session with a counselor. Which was very helpful.

Nine years down the track I am very grateful that my daughter was diagnosed quickly and is under the care of a good Doctor.
My daughter is now 25 and a mother herself. She now totally understands where my thoughts were when searching for answers to her health issues.

Wishing both of you all the best.
Aussie Mum

Daughter - SJS, Lupus, Underactive Thyroid, Wolff Parkinson White Syndrome & Insulin Resistance.

Me - Ankylosing Spondylitis, Total Thyroidectomy, Endometriosis, Adenomyosis, High Blood Pressure, Hiatus Hernia, Dry Eyes & Mouth, Stomach Issues, Enbrel, Thyroxine, Atacand, Pariet, Krill Oil, Vit D