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From Our Readers – Q&A Session 09-24-08

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Numbness and Tingling?

Q: I love your newsletter. I always find some piece of information that I can share with my support group and doctor. I have had FMS and RA for the last four years. I have had sporadic numbness and tingling on the outer right thigh. At times it is so painful that it feels like someone is shocking me with an electrical cord. Other times it is like that part of my leg is dead. Recently, the pains have started to migrate to my feet. And just like when your foot falls asleep, it is SO painful when the blood starts to flow.

I have had MRI’s and seen a Neurologist, but the tests were normal and that

doctor thinks it is all in my head. Any information you may have on this issue would be greatly appreciated. Keep up the good work and thanks for all your organization does to help us. – Tracy

A: Peripheral neuropathy (PN) is a general term that refers to disorder of the structure and function of peripheral motor, sensory and autonomic nerves. PN typically results in numbness, tingling and pain that can occur episodically or continuously, normally in the extremities. Neuropathy is a common occurrence and affects approximately 20 million people in the United States.

PN has many causes including inflammation, nerve compression or laceration, exposure to toxins, nutritional deficiencies and/or disease. Conditions that are most associated with peripheral nerve pain include: alcoholism, herpes zoster (shingles), diabetes mellitus, medication reaction, nutrition deficiency (vitamin B1, B6 and B12), fibromyalgia or autoimmune disorders. However, it is common that there can be no known cause of the nerve pain and in that case it is termed “idiopathic”.

If the pain has been assessed by a neurologist and there is no blatant nerve damage it can often be frustrating yet good news (because there is no injury to the nerves). It is often important to rule out other infections like Herpes Zoster or shingles and HIV. Because heavy metals in the body can also cause this kind of pain, getting tested for heavy metals can often provide important information to the cause of the symptoms. As well, making sure that there are no nutritional deficiencies or autoimmune disorders can help to diagnose the problem.

Treating the pain is often difficult and about 40% of people achieve relief from medications. If the pain is caused by an infection, diabetes or nutritional deficiency then medication or supplemental vitamins are indicated for treatment. Supplementing with alpha lipoic acid and high doses of vitamin B1 have also shown to improve some symptoms of nerve pain.


Copy of Information for Doctor?

Q: I have fibro and fatique and my doctor is very good, but I would like to copy the info and give it to her, as it might help her to help me and the many others here in Macon. She really cares about us and how we hurt and feel. Please may I give this info to her.? – Lois

A: You are welcome to print our articles and abstracts to share with your doctor or friends. It is only when an article is to be reproduced on another Internet site or in print media that specific permission is required. You could also e-mail links for newsletters or articles to anyone for whom you have an e-mail address.


FM and Ehlers Danlos Syndrome?

Q: Please write about Ehlers-Danlos Syndrome and FM. They play hand in hand with many. – Cynthia

A: Ehlers-Danlos syndrome (EDS) is an hereditary connective tissue disorder characterized by defects in collagen, the tough, fibrous protein in connective tissue that helps support the skin, muscles, ligaments and organs of the body. The most common symptoms of EDS are joint hypermobility (abnormally flexible, loose joints), unusually loose, thin, “stretchy” skin, and excessive fragility of the skin, blood vessels, and other bodily tissues and membranes. There are six types or classifications of EDS, each with its own distinct symptoms and characteristics. It is estimated that one in 5,000 to 10,000 people have some type of EDS.

There are some symptom similarities between EDS and Fibromyalgia – as well as between EDS and ME/CFS. Symptoms common to all three disorders include easy fatiguability and widespread muscle and joint pain.

In one study, eight percent of those diagnosed with FM also had the joint hypermobility common to EDS.

Another study noted that orthostatic intolerance is often seen in both ME/CFS and EDS…

And that a subset of ME/CFS patients with orthostatic intolerance also has EDS. (Orthostatic intolerance or hypotension is a sudden fall in blood pressure that occurs when a person assumes a standing position).

Other than the two studies mentioned, little research has been done to look at the possible relationship between EDS and either FM or ME/CFS. Although there very well may be a connection, we don’t yet have enough scientific evidence to say so conclusively.

For links to more information about EDS, go to the NIH’s site on Ehlers-Danlos Syndrome.


What Happened to the Message Board?

Q: My computer has been broken for a while and now everything [on the FM Message Board ] has changed. When did this happen? – Anon

A: The look of the Community Message Boards on the new ProHealth.com website is slightly different than on the old ImmuneSupport.com site. During this period of transition to our new, broader ProHealth.com “portal” site, ImmuneSupport.com still exists – and all message board communications appear simultaneously in both formats/sites. But if you’re looking for the latest news and articles, these are now being added only to the ProHealth portal .

By “portal,” we mean that ProHealth.com is a home base for information on a wide range of health issues – with a set of subsites for information on specific conditions. Largest by far are the ME/CFS and Fibromyalgia subsites, but we’re developing many others as well, to better support all your health management needs.


FM & Parkinson’s – A Link?

Q: I really want to know if anyone has found that fibromyalgia is linked to Parkinson’s. My grandma (maternal) and my mom had/have Parkinson’s and fibromyalgia. I do and my oldest daughter who is 25 does… I am finding out that now they are thinking that Parkinson’s is inherited. Two to three years ago, I got a definite “no” to that question. Now it is a “yes.” Apparently there is a test that one can do to see if you carry the gene… I wish I knew where to get that test and what it entails. – Anon

A: While we have not been able to find any information on a definitive link between Parkinson’s Disease (PD) and fibromyalgia, there are some interesting connections.

Parkinson’s is the result of a loss of brain cells that produce dopamine. There is no loss of brain cells in Fibromyalgia. However, research by Dr. Patrick B. Wood has confirmed that FM patients do not produce dopamine adequately in another portion of the brain. Although different parts of the brain appear to be involved, both PD and FM seem to be related to a lack of dopamine. Interestingly, there have been successful studies using the Parkinson’s drug pramipexole (brand name Mirapex) to treat FM.

You asked about genetic testing for PD. According to the National Institutes of Health, genetic testing has recently become available for the parkin and PINK1 genes. Parkin is a large gene and testing is difficult. At the current stage of understanding, testing is likely to give a meaningful result only for people who develop the condition before the age of 30 years. Pink1 appears to be a rare cause of inherited Parkinson’s disease. A small percentage (about 2 percent) of those developing the condition at an early age appear to carry mutations in the PINK1 gene. Unfortunately, genetic testing is not available for the most common forms of PD.

If you’re interested in pursuing genetic testing, talk to your neurologist about how and where you might get it done in your area. In the meantime, the NIH’s Handbook on Genetic Testing may answer some of your questions.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healtcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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