Multiple family members with autoimmune diseases....is there a link?

Posted by Dmkmom04 @dmkmom04, Jul 13, 2016

i am 48 yr old who tested + for HLAB-27 and Lupus at my family physician in 2012 after my son 2011(18 yr now) dx AS and daughter (23) dx same ur psoriatic arthritis. My father 70 just passed awayJune dx Lupus, end stage lung disease, brother(50 ) with primary progressive MS and his Daughter (23) dx RA . Anyone see this many autoimmune in 1 family? Know any clinical trials?
I read correlation between lupus /MS and AS/ MS. Anyone else know any info would be helpful.

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Profile picture for marylou705 @marylou705

It would be interesting to get a DNA test.

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@marylou705 I am not sure a DNA Test would help. I have had one with Ancestry and other than saying my family is Scottish that is about it. I am aware that we come from the Northwestern part of Europe but that is it. If you are not in a hurry, put some money away and do a blood test for auto immune disorders. Better yet, ask your dr if they will request the test then maybe it won't cost as much or not at all. That will be my next step. I have a sister who has three auto immune disorders and because it is not unusual to have more than one that is why I will request the test at my doctor's office next time I visit them.

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Profile picture for jamid @jamid

Churg Strause, Heart condition and Diabetes Sister, Ehlers-Danlos syndrome and lupus. Daughter and niece, POTS daughter and granddaughter, MCAS daughter and waiting for diagnosis on same for another niece, son diagnosed with Antithrombin deficiency earlier this year. He also has history of Asthma, Stomach issues, allergies. I was diagnosed with RA three years ago and also have Diabetes, asthma and allergies; I will be getting a knee replaced later this year. Daughter and Granddaughter have migraines. Grandson has Spina Bifida. Several in Family are also on the Autism spectrum. Chiari Malformation diagnosed in niece about a month ago. Most in the family have been diagnosed in the last 10-15 years with auto immune. I have not done my homework yet on the issues above to see which are, but doctor said that my family seems to be plagued with auto immune disorders he counted 15 of us so far with two more pending a diagnosis.

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@jamid I am sorry that your family is suffering in this way.

I am pretty sure that my maternal grandmother had scleroderma as I do. I suffer at relatively minor symptoms at this point….but also the risk of sudden death..

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I represent the other side of the coin. The gentics of my family had no AI diseases that I could detect but I seemed to be very "recessive" geneticly. So I think that counts for a lot. Not very scientific, more of a gut reaction. (And Crohn's is on the list.)

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Since early childhood, I have experienced significant exercise intolerance, with an inability to walk distances greater than 50 meters, climb stairs or inclines, ride a bicycle, participate in gymnastics, or lift heavy objects.
After 65 years, a final diagnosis from the UK: Post-Polio.

In addition, confirmed diagnoses:
1961 psoriasis diagnosis
1964 ectopic pregnancy / left salpingectomy
1964 Dermatological Clinic Augsburg Psoriasis
1967 Derma- Clinic Nuremberg mainly treated with cortisol ( Volon 40 and Volon 80)
1979 Uterine dysplasia 4/hysterectomy
1980 Diagnosis of low cortisol at the University of Erlangen
1983 extreme migraine - neurology no treatment
1993 PTSD diag-Kaiser Permanente South Sacramento
1998 Diverticulosis and C-Dif - Kaiser Permanente South Sacramento
2000 (US) low cortisol average 4.5 - treatment prednisone
2000 (US) progressive muscle weakness in legs, upper arms and back muscles
2007 (US) low cortisol 1.1 - Endo: treatment prednisone
2008 (US) MRI with contrast Chiari Malformation I
2009 (US) Chiari Malformation I with Decompression Surgery
2011 (US) Hemilaminectomies with posterolateral fusion with pedicle screws
2013 (US) Myalgia (myositis) diagnosis UNMH 2013/15/16 ICD G93.3 CSF
2013 (US) MRI - Stenosis and Tarlov Cyst Spondylitis
2016 (US) OP L4 – L5 (CD)
2016 (US) OP Lumbar spinal hardware infection, Data 4/7/16 Body fluid back lumbar spine superficial GS/CX: very rare growth: bacteremia: Staph epidermidis and Peptostreptococcus , Peptostreptococcus , one colony Staph caprae , Corynebacterium species,” treatment: IV 6 weeks antibiotics Vancomycin
2018 (US) Aortoiliac vascular calcifications are noted.
2020 Germany Scapula ganglion cyst - bilateral, 5 cm 2 Fibrosing /granulomatous processes in the apex of the scapula (MRI) Clinik DON MRI
2020 Germany Myasthenia Gravis / Eaton-Lambert Syndrome??? (Report UNI-Regensburg inconclusive)
2021 Germany COVID-19 and mRNA - BioNTech results: Stevens-Johnson syndrome (SJS)
2021 Germany Rheumatoid arthritis, Thrombosis, jaundice, herpes, urticaria, POTS, PEM, anaphylaxis (Onco: DON)
2021 Germany Corticotropic insufficiency (Endo: Dr. Vlotides Ingolstadt)
2022 UK Post-Polio diagnosis in the UK, Dr. Shaw.
2022 Germany: Antiphospholipid Syndrome, vWillebrand Factor 2 and 5, Lupus, Petechiae, Gene: ACADM

Current Symptoms - but I manage and keep going at the age of 76:

Fatigue: Persistent and profound fatigue with a constant sense of exhaustion, rarely alleviated by rest.
Muscle Weakness: Generalized muscle weakness, particularly in the upper and lower extremities, exacerbated by physical exertion such as lifting, stair climbing, or walking uphill.
Autonomic Symptoms: Diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), with symptoms including irregular palpitations and significant tachycardia upon standing.
Ocular and Oral: Xerostomia (dry mouth), dry eyes, and episodic visual disturbances in the left eye (described as fogging or blurred focus).
Auditory: Intermittent hearing disturbances with tinnitus affecting the left ear.
DNA: gs191 Impaired NSAID drug metabolism - ADAMTS13 deficiency.
rs12340895(C;G); four times higher odds of developing V617F-positive myelofibrosis (MPN)
Good: rs5848(G;G) lower dementia risk. Lower risk of frontotemporal dementia, alzheimer's disease and parkinson's disease.

Mother: Cushing-Syndrome, vision problems, rheumatoid arthritis - died at age 56
Father: psoriasis, vision problems, rheumatoid arthritis- died at age 80
Brother 1: ALS - died in 2014 age 64
Brother 2: heart attack 2022 age 71

My attitude: "Let battle commence".

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Profile picture for swalex @swalex

Since early childhood, I have experienced significant exercise intolerance, with an inability to walk distances greater than 50 meters, climb stairs or inclines, ride a bicycle, participate in gymnastics, or lift heavy objects.
After 65 years, a final diagnosis from the UK: Post-Polio.

In addition, confirmed diagnoses:
1961 psoriasis diagnosis
1964 ectopic pregnancy / left salpingectomy
1964 Dermatological Clinic Augsburg Psoriasis
1967 Derma- Clinic Nuremberg mainly treated with cortisol ( Volon 40 and Volon 80)
1979 Uterine dysplasia 4/hysterectomy
1980 Diagnosis of low cortisol at the University of Erlangen
1983 extreme migraine - neurology no treatment
1993 PTSD diag-Kaiser Permanente South Sacramento
1998 Diverticulosis and C-Dif - Kaiser Permanente South Sacramento
2000 (US) low cortisol average 4.5 - treatment prednisone
2000 (US) progressive muscle weakness in legs, upper arms and back muscles
2007 (US) low cortisol 1.1 - Endo: treatment prednisone
2008 (US) MRI with contrast Chiari Malformation I
2009 (US) Chiari Malformation I with Decompression Surgery
2011 (US) Hemilaminectomies with posterolateral fusion with pedicle screws
2013 (US) Myalgia (myositis) diagnosis UNMH 2013/15/16 ICD G93.3 CSF
2013 (US) MRI - Stenosis and Tarlov Cyst Spondylitis
2016 (US) OP L4 – L5 (CD)
2016 (US) OP Lumbar spinal hardware infection, Data 4/7/16 Body fluid back lumbar spine superficial GS/CX: very rare growth: bacteremia: Staph epidermidis and Peptostreptococcus , Peptostreptococcus , one colony Staph caprae , Corynebacterium species,” treatment: IV 6 weeks antibiotics Vancomycin
2018 (US) Aortoiliac vascular calcifications are noted.
2020 Germany Scapula ganglion cyst - bilateral, 5 cm 2 Fibrosing /granulomatous processes in the apex of the scapula (MRI) Clinik DON MRI
2020 Germany Myasthenia Gravis / Eaton-Lambert Syndrome??? (Report UNI-Regensburg inconclusive)
2021 Germany COVID-19 and mRNA - BioNTech results: Stevens-Johnson syndrome (SJS)
2021 Germany Rheumatoid arthritis, Thrombosis, jaundice, herpes, urticaria, POTS, PEM, anaphylaxis (Onco: DON)
2021 Germany Corticotropic insufficiency (Endo: Dr. Vlotides Ingolstadt)
2022 UK Post-Polio diagnosis in the UK, Dr. Shaw.
2022 Germany: Antiphospholipid Syndrome, vWillebrand Factor 2 and 5, Lupus, Petechiae, Gene: ACADM

Current Symptoms - but I manage and keep going at the age of 76:

Fatigue: Persistent and profound fatigue with a constant sense of exhaustion, rarely alleviated by rest.
Muscle Weakness: Generalized muscle weakness, particularly in the upper and lower extremities, exacerbated by physical exertion such as lifting, stair climbing, or walking uphill.
Autonomic Symptoms: Diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), with symptoms including irregular palpitations and significant tachycardia upon standing.
Ocular and Oral: Xerostomia (dry mouth), dry eyes, and episodic visual disturbances in the left eye (described as fogging or blurred focus).
Auditory: Intermittent hearing disturbances with tinnitus affecting the left ear.
DNA: gs191 Impaired NSAID drug metabolism - ADAMTS13 deficiency.
rs12340895(C;G); four times higher odds of developing V617F-positive myelofibrosis (MPN)
Good: rs5848(G;G) lower dementia risk. Lower risk of frontotemporal dementia, alzheimer's disease and parkinson's disease.

Mother: Cushing-Syndrome, vision problems, rheumatoid arthritis - died at age 56
Father: psoriasis, vision problems, rheumatoid arthritis- died at age 80
Brother 1: ALS - died in 2014 age 64
Brother 2: heart attack 2022 age 71

My attitude: "Let battle commence".

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@swalex
I am so sorry to read all you have been through, you are a tough cookie!
You have been through the battle and I pray you continue! You sound like a very strong individual after all of this, stay hopeful and continue to choose life and peace in it.

I have also been through a lot with auto immune illness and that of my families.

My son was type1 diabetic at 4yrs old. My daughter was diagnosed with Lupus. My mom and sister were chemically sensitive and sister died at 50 of colon cancer. Mom diagnosed with stage 4 lung cancer just before sister passed away, lost mom at age 68. Dad died of lung caner the year before her. at 69. Neither mom or sis smoked and parents had been divorced since 1972. My daughter recently diagnosed with RA and her son with psoriatic arthritis at 13. We all tested HLA-B27 positive.
I have thoracic scoliosis, psoriatic arthritis, AS has been so painful and really tries everyday to steal my joy, dry eye disease, cervical stenosis, OP@ age 46, and chronic IBS-constipation since childhood. I developed high blood pressure in 2022 and just recently diagnosed with high cholesterol. My glucose runs high and I am on a long list of meds for 64 yrs old. I try to remain positive and eat healthy for the most part. My husband has Dish which is also auto immune related. He has a lot of pain due to stiffening of his cervical spine and bad shoulders, many surgeries as he has over worked and lifted most of his life.
My aunts died of ALS and cancer as well as my G-ma.

I have to decide if I will go on a statin, I don't want to as I researched and see most cause more muscle pain and problems. However I don't want to have heart disease either:/ I am not totally sure what to do as I am on Bimzelix (biologic injection) for AS, Otezla for psoriasis and several other meds for the other problems. Do you take medications for your list of conditions? Any advice regarding statins, or other meds or supplements that have helped you?

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Hi,
We are just figuring out with in the one generation all have some form of Dysautonomia. Older brother and sister died as a result of MS, I'm struggling with the effects of Autonomia, my younger sister is just starting down the same track as me and my little sister has Hasimoto's. All of us aflicted with some form of Dysautonomia. There has to be a link but what it is we don't know and likely will never find out. It will be interesting to see if any of the next generation suffer the effects as well.
Cheers

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Profile picture for Terrez @terrez

@swalex
I am so sorry to read all you have been through, you are a tough cookie!
You have been through the battle and I pray you continue! You sound like a very strong individual after all of this, stay hopeful and continue to choose life and peace in it.

I have also been through a lot with auto immune illness and that of my families.

My son was type1 diabetic at 4yrs old. My daughter was diagnosed with Lupus. My mom and sister were chemically sensitive and sister died at 50 of colon cancer. Mom diagnosed with stage 4 lung cancer just before sister passed away, lost mom at age 68. Dad died of lung caner the year before her. at 69. Neither mom or sis smoked and parents had been divorced since 1972. My daughter recently diagnosed with RA and her son with psoriatic arthritis at 13. We all tested HLA-B27 positive.
I have thoracic scoliosis, psoriatic arthritis, AS has been so painful and really tries everyday to steal my joy, dry eye disease, cervical stenosis, OP@ age 46, and chronic IBS-constipation since childhood. I developed high blood pressure in 2022 and just recently diagnosed with high cholesterol. My glucose runs high and I am on a long list of meds for 64 yrs old. I try to remain positive and eat healthy for the most part. My husband has Dish which is also auto immune related. He has a lot of pain due to stiffening of his cervical spine and bad shoulders, many surgeries as he has over worked and lifted most of his life.
My aunts died of ALS and cancer as well as my G-ma.

I have to decide if I will go on a statin, I don't want to as I researched and see most cause more muscle pain and problems. However I don't want to have heart disease either:/ I am not totally sure what to do as I am on Bimzelix (biologic injection) for AS, Otezla for psoriasis and several other meds for the other problems. Do you take medications for your list of conditions? Any advice regarding statins, or other meds or supplements that have helped you?

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@terrez

Sorry, posting my detailed response is not working.

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My father had: Graves’ disease, Wegener’s granulomatous, vasculitis, and he died from prostate cancer. My mother had Shogren’s, and she died from colon cancer. My sister had Scleroderma and she died from lung cancer. She died at 60. My brother has Mediterranean anemia. I have pernicious anemia, eczema, interstitial cystitis. Everyday my brother and I wonder what we will be diagnosed with next.

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Profile picture for yrm @yrm

My father had: Graves’ disease, Wegener’s granulomatous, vasculitis, and he died from prostate cancer. My mother had Shogren’s, and she died from colon cancer. My sister had Scleroderma and she died from lung cancer. She died at 60. My brother has Mediterranean anemia. I have pernicious anemia, eczema, interstitial cystitis. Everyday my brother and I wonder what we will be diagnosed with next.

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@yrm
Years ago I gave up gluten and dairy, they are notorious for causing inflammation in our bodies. Chronic inflammation leads to many diseases. Food is truly medicine, I cook everything myself to ensure im eating clean. Never eat processed foods, maybe a very rare instance in a year. Does it get to be a pain sometimes, yes, is it worth it to me to ward off any more diseases, 💯 yes. My Mom has a couple very bad Autoimmune diseases that she's kept at bay for years now and at 85 decided she wants to dust off her ski's and get back on the slopes with me. How cool is that. Eating clean, eating well, not having gluten and very little dairy (she does have a little half & half in her 1 cup of coffee).

Food is truly medicine.

End of my PSA 😉

I sure hope you do not develop any more diseases 🙏

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