topic Re: hello I is back in Community Spirit

hello I is back

graham_paige — Thu, 01 Oct 2015 07:04:11 GMT

Three months in hospital and rehab and it is so good to be home..

Well thats the good news apart from they found out what the problem is

The bad news is they have no idea how to treat it as there is not very much known about it.. It is a sort of motor nerone and part ms that is effecting and atacking the nerves from within so the body is slowly attacing itself and I am now confined to a wheelchair or my motorised scooter so now have to remodel the house with ramps etc to get around as well as install a new bathroom that I can accsess Well Murphy has really done himself proud this time and thrown a real doozy at me with no feeling from the waist down and not much movement in the legs..

With no answers comeing from the doctors its a live one day at a time and if yer wake up in the morning its a bloody good day and yer use it to the best yer can wifout falling of yer twig..

Re: hello I is back

tasfleur — Thu, 01 Oct 2015 07:09:01 GMT

I'm on your side Graham, one day at a time .... xxxxxxx

Re: hello I is back

bluecat*dancing — Thu, 01 Oct 2015 07:10:54 GMT

[[[hugs]]]

Re: hello I is back

skyrider12-au — Thu, 01 Oct 2015 08:38:06 GMT

Welcome home graham-paige ... something for you to think about..

"The best and safest thing is to keep a balance in your life, acknowledge the great powers around us and in us. If you can do that, and live that way, you are really a wise man."

- Euripides

Re: hello I is back

serendipityricho — Thu, 01 Oct 2015 08:51:49 GMT

Fight it with all your might .Graham--adjust your abode to suit.

Hang in there bloke...................................................................................Richo.

Re: hello I is back

bright.ton42 — Thu, 01 Oct 2015 09:04:15 GMT

What the others said graham_paige. You've got spirit and humour in adversity and the world is sorely in need of both so you can share that with us. Please keep posting.

Re: hello I is back

twyngwyn — Thu, 01 Oct 2015 10:09:51 GMT

Re: hello I is back

kopenhagen5 — Thu, 01 Oct 2015 10:37:53 GMT

Hi, good to see you back, but circumstances could have been better.

As you see there is already a lot of support if you need it here. You probably know that.

Is it possible to post the medical term for the condition/s ?

I am always interested in learning and would like to source information on whether there are dietary measures to improve the condition. Cheers and keep your head up.

Re: hello I is back

graham_paige — Sun, 04 Oct 2015 03:00:12 GMT

Hello Kopes well the name for it is short version CIDP or long med term

Chronic Inflammatory Demyelinating Polyneuopathy which is in short a brakedown of the immune cells causing them to instead of protecting the body attacking it instead

Unfortunatlly in my case it is progressing fairly rapidly and has traveled to the chest and if it continues to do so into the arms as it has in the legs I am looking at becomeing a vertual para and if it continues from there I will be meeting my maker it seems so am calling on the luck of Irish Murphy however am thunkin at this stage I may just have run out of said luck as we have been on borowed time for some time now so it now remaines in MURPHYS hands..

Have been having monthly infusions as it is the only thing that they have at this time to treat it and it dose'nt seem to be working for me so far so not being a religious person I just have to keep telling that bug*** wif the sythe where to put it I guess..

Re: hello I is back

jessicadazzler97 — Sun, 04 Oct 2015 03:04:14 GMT

@twyngwyn wrote:

Glad to see someone has the courage to post a motivational quote...

And from a Christian pastor too! How times have changed since this morning...

Re: hello I is back

kopenhagen5 — Sun, 04 Oct 2015 03:35:00 GMT

Thank you Graham for replying during these extremely trying times for you.

I am sure you probably know much of the following but will put some interesting details here for anyone else reading.

CIDP is a rare disorder that can affect any age group and the onset of the disorder may begin during any decade of life. CIDP affects males twice as often as females (M2:F1) and the average age of onset is 50. The prevalence of CIDP is estimated to be around 5-7 cases per 100,000 individuals.

Glucocorticoid drugs such as prednisone have proven effective in treating individuals with CIDP. In many cases, individuals with CIDP may respond to corticosteroid treatment alone. However, individuals requiring high doses of corticosteroid drugs may experience side effects that deter long-term therapy. Corticosteroids may also be used in conjunction with other drugs such as those that suppress the immune system (immunosuppressive drugs). Azathioprine, mycophenolate, methotrexate, cyclosporine and cyclophosphamide are immunosuppressive drugs that have been used to treat CIDP but have not been proven to be effective in large patient trials.

Intravenous immunoglobulin (IVIG) has been proven to be effective and is often used as a treatment for chronic inflammatory demyelinating polyneuropathy. IVIG can enhance the immune system. Very high doses are usually used for initial treatment of CIDP and most patients require continued intermittent treatments. There is a clinical trial of a subcutaneous delivery of immunoglobulin that may be used instead of IVIG.

Plasma exchange (PE) has also been shown to be of benefit in chronic inflammatory demyelinating polyneuropathy. This procedure is a method for removing unwanted substances (toxins, metabolic substances and plasma parts) from the blood. Blood is removed from an affected individual and blood cells are separated from plasma. The plasma is then replaced with other human plasma and the patient’s blood cells are transfused back into the affected individual, thus removing only the plasma and its constituents. Similar to IVIG, PE is effective only for a few weeks and may require chronic intermittent treatments.

There is a great deal of interest in using monoclonal antibodies to treat CIDP. Clinical trials are being developed to use rituximab, a monoclonal antibody against immune forming lymphocytes (B cells). Another monoclonal antibody under consideration is alemtuzumab which acts on both B cells and T cells, providing a broader attack on the immune system. Some of the agents that have been found to be effective in multiple sclerosis are now being considered for CIDP. A clinical trial treating patients with fingolimod, a drug that affects the ability of lymphocytes to contribute to immune function, is now underway.

Causes of autoimmune disorders are unknown, however certain foods can aggravate inflammation and make CIDP worse.

Foods to Avoid

Saturated fat and trans fats may increase pro-inflammatory markers, especially in people who are overweight or who have diabetes. Foods that are high in these types of unhealthy fat include red meat, butter, cheese and ice cream. In addition, most processed foods, including fast foods, frozen foods and soups, are made with synthetic trans fat. Sugar and refined carbohydrates may also increase inflammation responses in some people. In general, eating a high-calorie diet can contribute to chronic inflammation.

Foods to Include

Include a variety of fruits and vegetables in your diet for their natural anti-inflammatory properties. These types of food are a good source of antioxidants, which can limit the free radical damage in your body. Fruits and vegetables are high in various vitamins and minerals, such as vitamin D, which has known anti-inflammatory properties. Include essential fats in your diet that are high in omega-3 fatty acids. Certain fatty fish, such as tuna and salmon, are good sources of omega-3 fatty acids. You can also take a fish oil supplement.

Hope you see some reversal of the disease soon.