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Personal Stories: Cognitive, Headaches and Vestibular Disorders

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

There are many possible causes of cognitive problems, brain fog, headaches, migraines, dizziness, balance problems and vertigo. Just because these stories are listed here does not mean their particular symptoms are caused by scleroderma or by vascular complications of scleroderma or other illnesses. (Also see What is Scleroderma?, Types of Scleroderma, and Brain Involvement)

Betty M: CREST Syndrome I was in so much pain for so long that I tried to take my own life. This only ended me up in a mental institution where I was given shock treatments that wiped out my whole memory…

Carla: CREST Syndrome and Fibromyalgia When I read some of these stories, they scare the devil out of me. Is this really that bad?…

Carol C: CREST Syndrome Scleroderma and Raynaud's have not robbed me of a fulfilling career…

Cedric: Linear Scleroderma, En Coup de Sabre (South Africa) I became aware of a small brown spot just above my right eye and gradually this patch became bigger and darker…

Cindy: Undifferentiated Connective Tissue Disease (UCTD) He seems to think that I have Systemic Lupus Erythematosus, but until my symptoms show more criteria for it, he can't call it that…

Debbie: CREST Here's a copy of a letter I sent to my rheumatologist…

Debby: CREST Scleroderma It was then everything added up— that I did not have several different conditions, but rather they were all part of the CREST…

Dienne: Morphea plus possible CREST I finally saw a rheumatologist about 6 years ago, who told me I had Raynaud's and Telangiectasia (spider veins)…

Faith Rumph: Eosinophilia-Myalgia Syndrome (EMS) I am one of several thousand Americans who became ill from ingesting contaminated over-the-counter L-tryptophan, an amino acid dietary supplement…

Gail: Undifferentiated Connective Tissue Disease (UCTD) They found I had Interstitial Cystitis, a positive ANA, and gastrointestinal dysmotility…

Gertie: Systemic Scleroderma without Skin Involvement or Raynaud's She looked thoughtful for a moment, then quietly asked "Is there hope?"

Gina: Morphea or Linear Scleroderma I really try to put it out of my mind and be thankful that it is not systemic…

Heidi: Difficult Diagnosis of UCTD Do these symptoms resemble the beginning symptoms for others who have gone on to be diagnosed with scleroderma?

Jewell: Diffuse Progressive Systemic Sclerosis When I think back, I had been getting sick for a long time. I just did not know it…

Joan Stovall: Scleroderma Dallas, Texas I may have scleroderma, but it does not have me…

Jody: Fibromyalgia/Difficult Diagnosis In Sudan, I was on IV for heat stroke and food poisoning. And in Thailand, at the end of March, it all came to a crashing halt…

Karen M.R.: Diffuse Scleroderma and Fibromyalgia I was so glad she was there, because I sort of went into shock when the doctor said she was going to start me on chemo treatments…

Kathi: Scleroderma/Lupus I am forty-three years old and have not been feeling well for ten years…

Kellie: Overlap Scleroderma and Mixed Connective Tissue Disease (MCTD) I am so relieved to read about so many people who have had the same experiences…

Linda F: CREST Scleroderma, Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis, Hematoma, and Osteomyelitis I need to tell you all the gory details so you can truly understand what a miracle it is that I am alive today…

Lisa P: Undifferentiated Connective Tissue Disease (UCTD) I have an appointment with a new rheumatologist on May tenth. Hopefully I will get some answers…

Marie: CREST About 8 years ago, I noticed my fingers were going numb, turning white, while grocery shopping

Mary S: Diffuse Scleroderma When he called the internist I was in the office and I heard him say, "I think I am sending you a patient who has scleroderma but I am not sure. She has a lot of the symptoms."

Monica: MCTD This diagnosis is a bittersweet one for us. Yes, after seven years of hell, we now have a name…

Robin: Difficult Diagnosis My rheumatologist said I have scleroderma, but just lately she said now she is not sure if it is that or fibromyalgia…

Patty S.:Localized Scleroderma, Pulmonary Hypertension and Sjögren's I have quit my job and reduced my stress a hundred percent. I am doting on my children and my husband…

Shar: Lupus, Scleroderma, Sjögren's, and Fibromyalgia Was my battle with Hepatitis C worth it? Yes!

Sherrill: Diffuse Systemic Scleroderma (New Zealand) I could no longer walk, due to knee contractures. My hands resembled claws. I had elbow contractures and neck contractures, and could not straighten my arms…

Sherry: Fibromyalgia, Hypothyroidism and Raynaud's He said Fibromyalgia is just pain, and if I could not handle my job, I should quit…

Sue W: UCTD with Neurological and Musculoskeletal Involvement Prior to this unique onset of symptoms I worked as a nurse and I was a very independent, self-sufficient single parent…

Tina Lech: Diffuse Scleroderma, Fibromyalgia, Pineal Cyst I was a very active, alive, mother of three…

William M: Scleroderma or Lupus I had to give up my career of being a registered nurse (RN) over two years ago due to total disability…

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