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Surviving and Thriving with Chronic Illness

Category: "Multiple Sclerosis"

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Video: POTS Care Opens!

The day has arrived! We are happy to announce the opening of POTS Care -- geared to help patients with Idiopathic POTS (often found with EDS, Chronic Fatigue Syndrome or Chronic Lyme disease). Dr. Diana, a former patient with POTS, is now part of a team helping those with this form of POTS that doesn't usually respond well to symptomatic treatment. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS 41 Comments | View

Video: Diamox and Alkalinity (updated)

Have IIH or hydrocephalus and need help with Diamox? Staying alkaline helps -- here's how. In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, POTS 14 Comments | View

Video: Let’s talk about Diamox! updated

Diamox can be used to lower intracranial pressure in folks with IIH and hydrocephalus allowing many to avoid brain shunts (and many patients with EDS can avoid neck fusions and Chiari surgery! The use of Diamox can be tricky -- let's chat about that! In: Ehlers-Danlos, Hydrocephalus, Multiple Sclerosis, POTS 11 Comments | View

Video: RAW DaM Data!

Dr. Diana discusses the importance of getting a copy of your RAW data! Essential for rare disease and invisible illnesses. Thanks to my friends at www.ACMImimi.org for their great work with music and medicine! Direct link to their video on DaM Data is here: http://youtu.be/0gpk-fbfg4Y In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities 24 Comments | View

Video: Urine in our Invisible Illnesses! Eww…

Dr. Diana's research into invisible illnesses continues with your help! Do you have M.E./CFS (Chronic Fatigue Syndrome), dysautonomia, POTS with or without Ehlers-Danlos syndrome or Joint Hypermobility, rheumatoid arthritis, Chronic Lyme Disease, Multiple Sclerosis or Lupus? Let's look at your urine! In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS 20 Comments | View

Video: Spoonie Relationships and Dr. Sharon

Dr. Diana and Dr. Sharon, psychiatrist and spoonie with EDS and POTS discuss relationships and Valentine's Day ideas. Relationships can be difficult for the healthy! Listen in for their discussion of our special challenges and hear some thoughts as to why traditions are still important in a relationship. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS 59 Comments | View

Video: The Magic of Magnesium

Dr. Collins writes an excellent paper on the importance of magnesium in our diet. This is especially important for those of us with connective tissue disorders such as Ehlers-Danlos syndrome. Dr. Diana summarizes key points in her paper and offers her thoughts. A MUST SEE! http://prettyill.com/downloads/Magnesium_and_EDS_by_Heidi_Collins,_MD.pdf In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS 13 Comments | View

Video: Dysautonomia and Vascular Abnormalities

Dr. Diana discusses vascular abnormalities (and their treatments) found with EDS and dysautonomia. In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS, Vascular abnormalities 11 Comments | View

Video: Suicidal thoughts and depression

Dr. Diana discusses depression and suicide ideation -- two very common symptoms in dysautonomia and numerous invisible illnesses, including M.S., EDS, fibromyalgia, chronic fatigue or "M.E.", rheumatoid arthritis, lupus and endometriosis. Always reach out for help if you experience this symptom, and understand it is a reversible symptom. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities 15 Comments | View

Video: Clinical trial testing and Financials

Dr. Diana as Patient gives a status report for pre-clinical trial testing being offered (at no charge) for invisible illnesses such as dysautonomia and Ehlers-Danlos syndrome, chronic fatigue, fibromyalgia, chronic Lyme disease, RA and endometriosis. Financials for Prettyill are also disclosed. In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS, Vascular abnormalities 8 Comments | View

Video: Clinical Trials!! How to Participate

Clinical trial pretesting is STARTING ON OCT 9! No charge to you! Chronic fatigue (or M.E.), Multiple Sclerosis, Rheumatoid Arthritis, chronic endometriosis, Fibromyalgia, Dysautonomia with EDS (or joint hypermobility), Chronic Lyme Disease. Limited number of patients can be accepted; by appt only. Contact us today!!!! In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities 28 Comments | View

Video: Diagnosing Dysautonomia!

Dr. Diana explains what is involved in the diagnosis of dysautonomia. What is a "subclinical" diagnosis? Why a heart rate variability test is not enough! A must see for all spoonies - EDS with dysautonomia, POTS, MS, chronic fatigue, chronic Lyme, fibromyalgia, RA and other autoimmune and neurodegenerative diseases. Articles at www.Prettyill.com In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, POTS 12 Comments | View

Video: Thrombosis anyone? MTHFR results!

MUST SEE if you have an autoimmune or neurodegenerative condition. Our risk of thrombosis. Dr. Diana shares the results of her genetic tests from "23andme". Does she have the MTHFR genetic defect? In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities 15 Comments | View

Video: Are you “immune system challenged?” How to tell

Spoonies! An easy way to see if your immune system is low. This is common in numerous "autoimmune" and neurodegenerative disorders. Great test for those with M.S., EDS with dysautonomia, chronic Lyme, chronic fatigue, M.E., fibromyalgia, Lupus, Sjogren's, Rheumatoid Arthritis, Alzheimer's, etc. Dr. Diana explains In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS 11 Comments | View

Video: My POTS is gone—was it angioplasty? Uh, no.

POTS, one aspect of dysautonomia is GONE for me. Working with the root of the problem (as opposed to treating the symptoms via salt-loading, etc) may be the key for many of us with dysautonomia (EDS, chronic fatigue, fibromyalgia, M.S., chronic Lyme, etc). Setting up clinical trials now. If interested, please send your contact information to "volunteers@Prettyill.com". If you'd like to help, please let me know! smile In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities 10 Comments | View

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Resource Results

Should dysautonomia patients get the flu vaccine?

It’s a tough call for many of us—should dysautonomia patients get the flu vaccine? We often times will flare with symptoms after the vaccine, but is the flare worse than the flare we’d experience with the flu? It’s a decision each one of us grapples with every year! Here’s an abstract concerning this tendency to flare.

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In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, POTS

A case of EDS and recurrent venous thrombosis—ONE CASE?

A case of venous thrombosis in EDS. ONE CASE, Dr. Diana asks. Her research is showing a high prevalence of venous thromboses in EDS patients, even without genetic abnormalities of clotting.

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In: Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, POTS, Vascular abnormalities

Diet Sodas Heighten Risk for Vascular Disorders

Important information for those of us with vascular disorders. Watch those diet sodas!

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS, Vascular abnormalities

Salt linked to autoimmune diseases

One reason Dr. Diana is trying to find and treat the SOURCE of POTS / Dysautonomia . EDS/POTS patients are prone to developing a vast array of autoimmune disorders, including M.S., Rheumatoid Arthritis, psoriasis, etc. This article explains why the typical recommendation of salt loading may harm us (and our endothelium) in the long run. A MUST READ!

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In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, Pain Control, POTS, Vascular abnormalities

The Driscoll Theory® Newly Revised is now Available for Purchase

After much delay The Driscoll Theory® Newly Revised is now Available for Purchase as a downloadable PDF. We decided a PDF was the quickest way to get this information to you. The PDF is not printable; however if there is enough demand we’ll see about producing The Driscoll Theory® as a book.  Click on the icon or link or icon to buy it now. Buy Now

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS, Vascular abnormalities

NOW COMPLETED: Symptoms Checklist for EDS

A checklist for your symptoms. If you have ever had a symptom, please check “yes”. You can return this form to me by emailing it back to Clinical_Trials@Prettyill.com. Thank you so much for helping us all!

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, POTS

Illness Sucks but I find the Funny!

Dealing with a chronic (especially invisible) illness can be more than trying! Need a chuckle? I love this site to share some of our outrageous and silly moments. Enjoy!

Online Resources In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Multiple Sclerosis, Pain Control, POTS

Poem to Dr. Diana from a Patient

Sweet poem of thanks to Dr. Diana from a patient and fellow spoonie. Uplifting and thoughtful.

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In: Chronic Fatigue, Coping, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Mast Cell Disease, Multiple Sclerosis, Pain Control, POTS

Magnesium and Ehlers-Danlos syndrome by Heidi Collins, MD

Dr. Collins writes an excellent paper on the importance of magnesium in our diet. This is especially important for those of us with connective tissue disorders such as Ehlers-Danlos syndrome. Dr. Diana summarizes key points in her paper and offers her thoughts.

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View | Articles & Hand-outs

In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Mast Cell Disease, Multiple Sclerosis, Orthopedic Issues, Pain Control, POTS

External Communicating hydrocephalus. Early findings in congenital communicating hydrocephalus.

External Communicating hydrocephalus. Early findings in congenital communicating hydrocephalus.

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, POTS, Vascular abnormalities

Article concerning IIH and chronic daily headache

“Utility of CSF pressure monitoring to identify idiopathic intracranial hypertension without papilledema in patients with chronic daily headache.

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In: Chronic Fatigue, Ehlers-Danlos, Fibromyalgia, Hydrocephalus, Multiple Sclerosis, POTS, Vascular abnormalities

FAQ’s

Dr. Diana answers some of the most common questions here.

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In: Chronic Fatigue, Ehlers-Danlos, Mast Cell Disease, Multiple Sclerosis

POSTER - Cardiac Effects in the Multiple Sclerosis Patients - Implications to Avoid Restenosis

Dr. Diana Driscoll and Dr. Clair Francomano present an evaluation of molecular, chemical and cellular changes that occur in the multiple sclerosis and Ehlers-Danlos patient leading to left ventricular diastolic dysfunction. Such effects may be systemic, leading to potential causes of restenosis and new treatment options to reduce such systemic chemical changes.

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In: Ehlers-Danlos, Multiple Sclerosis, Vascular abnormalities

Poster -  Acetazolamide as a Medical Treatment Option for Patients with Neurodegenerative Disease

Acetazolamide as a Medical Treatment Option for Patients with Neurodegenerative Disease in conjunction with, or independent of, CCSVI angioplasty. Dr. Diana Driscoll and Dr. Bill Code reveal the results of their small sample trial using acetazolamide for MS, Chronic Lyme, and Ehlers-Danlos patients with autonomic dysfunctions with overall positive results.

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In: Ehlers-Danlos, Multiple Sclerosis, Vascular abnormalities

Poster - Vascular Fundus Changes Observed in Patients with High Probablility of CCSVI

Poster presentation for ISNVD. Dr. Diana Driscoll, Dr. Rich Driscoll and Dr. Clair Francomano summarize the fundus findings seen in patients with EDS, MS or both conditions. CCSVI? The eyes have it.

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In: Ehlers-Danlos, Multiple Sclerosis, Vascular abnormalities

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