Showing posts with label multiple sclerosis. Show all posts
Showing posts with label multiple sclerosis. Show all posts

Wednesday, March 4, 2009

Celebrating The "Women Of HOPE" Journey # 2

~~Marla's Journey~~

My name is Marla Martindale and I have been diagnosed with RSD since November 2003 after breaking my ankle on October 1, 2003 at 4:10pm....yes I remember it well, because I broke it on both sides.
While I had my cast on I couldn't stand anything over my toes and I would get real touchy if anyone even got close to my foot, but I didn't know why because I had never broke anything that severely before.

Then once the cast came off and the doctor was telling me the exercises I needed to do he touched a certain spot on my foot and I told him "You bout made me wet myself when you touched right there" he responded with "Clean up on aisle nine". He continued to explain all the things I needed to do but I should be able to get up and walk out without the crutches, but if not that was fine just work on it over the next couple days. So when I went to get up off his table and start walking again without crutches, I couldn't do it!! It hurt way too badly to put weight on my foot and to even put my foot on the floor. I know my husband, the doctor and his nurse thought I was a weenie but I really didn't care, I was using those crutches like it or not.
I went back to my office and was talking with some of the ladies around there and I had my leg hanging down when one of them noticed it was all deep purple. She asked me about it and at that time I hadn't noticed it because I just had the cast taken off not an hour before. She was telling me I needed to call the doctor and let him know, but I didn't, I waited about a week even though it continued to turn deep purple and had this horrible pain oh dopey me just kept putting it off....don't do that people!!

When I did call and was describing what was going on to the nurse she told me to come in right then. So I loaded up in my car and went right over. The doctor took one look at my leg and sent me for x-rays. Once he had the x-rays back he tried to explain to me that I had Reflex Sympathetic Dystrophy but he was talking or explaining over my head. And my head was already reeling from just the name "Reflex Sympathetic Dystrophy".
To be honest I think I missed some of what he was saying because I got stuck on those words, especially "Dystrophy", that didn't sound like something I wanted because I kept picturing Jerry Lewis doing his telethon for Muscular Dystrophy and I knew that was bad news. But all in all I didn't catch much of what this doctor was telling me.

He told me he was going to refer me to another doctor who was better capable of treating this and was about to walk out the door when I asked him, "What do I do about this" and he looked me dead in the eye and said, "Don't give into it". HUH??
Well now at the time I was more than a little upset!!
I was thinking how dare he leave me like that, but he did. So I go to this other doctor. She was so shocked to see someone with RSD. She hadn't seen it since she was in med school many years back. She explained things to me in a manner in which made sense and got me started on physical therapy. I must say the only part of physical therapy I didn't like was the contrast baths....those hurt so badly. I went through 8 weeks of physical therapy while still working full time.
I also had 3 rounds of Spinal Blocks Injections that would only last about 30 days at best.

Then I started getting better and I was doing really good for almost 2 years. Then in October of 2006 I had a dental appointment to get my front tooth fixed. I took the guidelines from the RSD Organization for dental procedures with me and the dentist followed them to the letter.

It was my body that didn't pay any attention to them. It started going crazy on me. I started shaking like I had a severe case of Parkinson's Disease. I had to sit in my desk chair for 3 days straight, day and night because I couldn't find anything any comfortable enough to sit or lay in, so that's where I stayed.
My leg swelled up bigger than it ever had before and was so deep dark purple, it was pure agony for sure. That is when my RSD went into overdrive!! It decided to venture out to the rest of my body....
and I do mean everywhere on my body!!

But you know what, I survived it and I am growing stronger because of it. Don't get me wrong, I have had my share of "pity parties", but I have had more of trying not to allow the RSD to take control over me, I will have control over it!! If you are finding yourself needing to understand how to get control of your RSD and your life, I am here for you!!
I can help you come to terms with what is going on inside your body so you can have mental strength to control the amount of pain you actually do feel. It's not an easy road to journey down, but if you are willing to put in the time and effort and aren't afraid of hard work, than you CAN and WILL succeed too!!

In October 2007 I was not only diagnosed again with RSD-Full Body, but now they threw in Fibromyalgia, Osteoporosis and Multiple Sclerosis.
Guess my RSD was lonely and needed someone to play with, so instead of inviting just one playmate over, it decided to bring along the whole crew.
To be totally honest with you though, I really don't give those others much thought because frankly none of them can compare to RSD!!
So I have embraced it and have learned so much about myself, and am still learning things everyday, I have LOVED what I have learned and what I continue to learn. And I look forward to helping you learn about yourself.

I wouldn't wish this on my worse enemy, but I am so glad that it all happened to me, because it has made me stronger, softer, more caring, more giving, insightful, loving, in-touch, feeling valuable, and so many more things that could completely fill this page, so I will just leave it at that. And once you get to know me, you will see, I'm simply an honest person who wants nothing more than to help everyone as much as possible.

On March 31, 2008 I did a 4 day trial with a Spinal Cord Stimulator. It didn't help 100%, more like 30-35% and that was enough for me to tell the doctor to set up a time for the permanent implant because it can only get better with time. I am ready to take the time needed to make it work for me on more like a 45-50%, and beyond!!

I did learn some interesting things during the trial that wasn't told to me prior to me doing it. When I told the doctor about them, he just laughed and said, "Well, nobody has ever told me things like that before." Guess he didn't realize I was going to tell all. =)

Since then I have spoken with numerous people who were going through the trial and have shared the little things the doctor doesn't tell you!! So I am putting all that information into an eBook that will be available on my site soon! So check it often!!

On June 2, 2008 I did have the permanent Spinal Cord Stimulator implanted and I am so glad I did. The first few days weren't easy, but it all has been worth it!!

Saturday, December 13, 2008

Status of Stem Cell Therapy for Multiple Sclerosis

About Multiple Sclerosis (MS)

Multiple Sclerosis, with an incidence of 100 in 100000 in the US and Europe, is by far the most frequent neurodegenerative disease (1). MS is a chronic, demyelinating disease of the brain and spinal cord -collectively the central nervous system (CNS). Demyelination is a process of gradual destruction of the myelin sheath, that surrounds many of the axons of nerve cells (neurons), leading to axonal injury or loss and consequently severely impaired nerve signals. The disease is named for the multiple scleroses (scars or plaques) that are created on the myelinated axons. A repair mechanism - remyelination of the axons by cells known as oligodendrocytes - takes place in the early phases of disease but the reformed myelin sheaths are thinner and less effective. Repeated attacks lead to fewer effective remyelinations until a scar is built up on the damaged axon. The central nervous system should be able to recruit oligodendrocyte stem cells but something would seem to inhibit stem cells in the affected areas.



Electronmicrograph showing branched oligodendrocytes with processes extending to several underlying axons

One oligodendrocyte wraps myelin around axons of several neurons




It is generally accepted that MS is an inflammatory autoimmune disease- whereby an individual’s own immune response attacks the nervous system. Certain viruses, bacteria, stress and genetics have been implicated in disease manifestations. MS causes a variety of symptoms depending on where in the CNS the multiple lesions occur. Also,neurological deficits are progressively accumulated. In any individual there may be several complicating factors affecting the unpredictable course of the disease - there may be times of dormancy or times when there is steady progression.

The disease is categorized by several subtypes:

Relapsing remitting MS: unpredictable relapses (attacks) followed by months to years of remission. Effects of attacks may either resolve or may be permanent.

Secondary progressive MS: characterized by neurologic decline between attacks without periods of remission. Most common type of MS and causes most disability.

Primary progressive MS: decline occurs continuously without clear attacks, no remission.

Progressive relapsing MS: steady neurologic decline from onset,patients suffer superimposed attacks. Least common.

While MS does not currently have a cure, there are several treatments available for moderating the symptoms and for managing the various consequences of attacks. The currently approved treatments are aimed at returning function after an attack and preventing disability.

MS Treatment Objectives - the way forward: A Role for Stem Cells

During multiple relapses in the course of MS, oligodendrocytes and their progenitors are lost(2) and the nervous system has only limited capacity to recover from this extensive neuronal or glial damage. This is partly due to the formation of barriers, known as "glial" scars,which are triggered by the body to protect the injured nerve tissue from further injury. This dense scar tissue throws up a blockade to foreign cells, including transplants meant to heal and regenerate(group at Harvard medical school). There is evidence, however, that the adult CNS retains populations of cells with stem cell-like properties that have extensive proliferative capacity (3).

The challenge for current medical therapies appears to be remyelinating chronically demyelinated axons. Two distinct approaches can be considered to promote myelin repair; in one the endogenous myelin repair processes are stimulated through the delivery of growth factors,and in the second the repair process are augmented through the delivery of exogenous cells with myelination potential. Also, the effective treatment of MS requires modulation of the immune system, since demyelination is associated with specific immunological activation (4).

Karussis and kassis (Sept 2007) described how different stem cells migrate to areas of white matter lesions (plaques) and have the potential to support local neurogenesis and rebuilding of the affected myelin – believed to be achieved by support of the resident CNS stem cells and by differentiation of the transplanted cells into neurons and myelin-producing oligodendrocytes. These stem cells were also shown to possess immunomodulating properties.

Several types of stem cells (discussed later in this article) having the capacity for promoting myelin repair, as well as modulating the immune response, are potential candidates for MS therapy.


Stem cell transplantation for treating MS: current developments (as at 2007)


Many inflammatory diseases are diffuse and widespread. However,intravenous injection has been demonstrated as an appropriate means of diffuse delivery of stem cells with the possibility of targeting; the problem for distribution to other tissues or organs still need sevaluation (1,5).

Neural stem cells: Many different cell types, including neural stem cells and precursors,have been suggested as candidate cells for therapy. There are however complexities in obtaining neural stem cells from the adult CNS. A group from the University of California, San Francisco published their findings in The Scientist (July 2007) cautioning against the notion that neural stem cells can generate any type of neuron. This group predict difficulties in using adult neural stem cells to treat neurological disease, although it remains possible that scientists could manipulate neural stem cells in vitro to make them more flexible.

Bone marrow stem cells: As early as the year 2000 adult bone marrow cells were shown to have the capacity to differentiate to oligodendroglial cells indicating their potential for treating demyelinating diseases (6). At the same time, a phase II trial using auto logous bone marrow stem cell transplantation to treat 85 patients for progressive MS was conducted in 20 European centers. Neurological improvement was seen in 21% of patients; confirmed progression-free survival was seen in 74% of patients at 3 years; disease progression occurred in 20%.

Additionally,it was reported that auto logous haematopoietic stem cell transplantation can regenerate a tolerant immune system and is a potentially effective rescue therapy in a subset of patients with aggressive forms of MS refractory to approved immunomodulatory and immuno suppressive agents (7). Cassiani-Ingoni and fellow investigators,suggest that bone marrow transplantation can suppress inflammatory disease in a majority of MS patients, but retards clinical progression only in patients treated in the early stages of the disease (8).

Mesenchymal stem cells (MSCs):[Mesenchymal cells are non-haematopoieic stem cells derived from marrow or umbilical cord, the more appropriate terminology is multipotentstromal cell yet MSC still persists in the literature] Emerging evidence suggests that mesenchymal stem cells may have the capacity to generate cells with the characteristics of neurons and glia and consequently promote repair in the injured CNS. How mesenchymal stem cells affect functional recovery in the damaged adult CNS is not well understood. Possibly the transplanted multipotent cells migrate to the injury sites, proliferate, and then differentiate into the appropriate neural cells that then effect repair. Although mesenchymal stem cell shave a high survival and migration potential, the proportion that can be directed towards a neural fate appears to be relatively small. It may be that MSCs, through the release of soluble signals in areas of injury, have a direct influence on the endogenous neural stem cells to promote repair through neuro- and oligodendrogenesis (3).

Mesenchymal cells can also exert immunomodulatory effects by inducing suppression of the autoimmune myelin-targeting lymphocytes. MSCs harvested from bone marrow can be obtained from the donor patient him/herself, thereby reducing the risk for developing malignancies. It has been mooted that these cells offer significant practical advantages over other types of stem cells(5,9).

CD34+ cells:CD34+ cells are multipotent haematopoietic stem cell found in bone marrow and umbilical cord blood. These stem cells are reportedly capable of transforming into neuro protective glia and myelin-producing oligodendrocytes (10). A proposed advantage of umbilical cord CD34+stem cell transplantation is that, when administered without additional medications and powerful immune suppressants, virtually no side effects are evident

(10). Stem Cell Therapy – cause for optimism:
Significant advances have been made in researching the therapeutic potential of stem cells for neuro degenerative diseases and there are already several facilities offering stem cell treatments! Transplanting cells into focal MS lesions may be the ultimate therapeutic approach,and clinical trials may be the way to determine whether exogenous stem cells are able to survive, differentiate and myelinate axons in plaques (2). While the current number of stem cell-based clinical trials for demyelinating diseases is limited, this is likely to increase significantly in the next few years (4).

References

1. Magnus, Rao et al. Neural stem cells in inflammatory CNS diseases:mechanisms and therapy J. Cell. Mol. Med. (2005) 9:2 303-319
2. Duncan I Replacing cells in multiple sclerosis J.Neurol.Sci. Jun 2007 (epub ahead of print)
3. Bai, Caplan, Lennon & Miller Human Mesenchymal Stem CellsSignals Regulate Neural Stem Cell Fate Neurochem Res (2007) 32:353–362
4. Miller & Bai. Cellular approaches for stimulating CNSremyelination Regenerative medicine 2007 Sept 2 (5) 817-829
5. Karussis, Kassis, Basan, Slavin. Immunomodulation andneuroprotection with mesenchymal bone marrow stem cells: a proposedtreatment for MS J.Neurol.Sci 2007 July (epub ahead of print)
6. Bonilla, Alarcon, Villaverde et al Eur J Neurosci 2002 15(3) 575-582.
7. Muraro, Bielekova Emerging therapies for MS,. Neurotherapeutics 2007 Oct 4(4) 676-692
8. Cassiani-Ingoni, Muraro, Magnus et al. Disease progression in amodel of MS J.Neuropathol Exp Neurol 2007 Jul 66(7);637-49
9. Karussis & Kassis. Use of stem cells for the treatment of MSExpert Review of eurotherapeutics 2007Sept: 7(9) 1189-1201
10. Steenblock, D - www.stemcelltherapies.org electron micrograph from http://neurophilosophy.wordpress.com

www.stemcells21.com/stem_cell_therapy_for_multiple_sclerosis.asp

Saturday, November 8, 2008

Another RSD Tip of The Day!

If You Have Had, You Now Have!!

If you have the ability to complain about something, you also have the ability to take the positive action that will make it better. And taking the positive action is infinitely more effective than merely complaining!

If you have cause to get angry, you also can turn the energy of that anger in a positive direction. You can then resolve it better for all concerned.

If you have reason to be frustrated, you also have the motivation necessary to get beyond it. No frustration ever has to continue troubling you!!

If you have experienced disappointment, you also have learned valuable lessons. Look ahead, apply what you have learned, and transform your disappointment into a positive turning point.

If you have known loss and sadness, you also have gained a profound understanding of how very precious life is. Take the opportunity, for which you've paid so dearly, to raise yourself to a whole new level of meaning and fulfillment.

If you face a difficult challenge, you also have the opportunity to grow stronger, more capable, wiser, experienced, and resilient. Embrace those opportunities, for in them you will find the sweet substance of life!!

Courage is not limited to the battlefield or the Indianapolis 500 or bravely catching a thief in your house. The real tests of courage are much quieter. They are the inner tests, like remaining faithful when nobody's looking, like enduring pain when the room is empty, like standing alone when you're misunderstood.

~Charles Swindoll

Thursday, August 14, 2008

Immunosyn Corporation Files 10-Q

Last update: 11:23 a.m. EDT Aug. 14, 2008
LA JOLLA, Calif., Aug 14, 2008 (BUSINESS WIRE) -- Immunosyn Corporation (IMYN:
immunosyn corp com

Sponsored by:
IMYN 1.70, -0.10, -5.6%) , a biotechnology firm that has obtained exclusive worldwide marketing, sales and distribution rights to the biopharmaceutical SF-1019 from its affiliate Argyll Biotechnologies, LLC, has announced its results for the quarter ending June 30, 2008.

For the quarter ended June 30, 2008, the company incurred $629,884.00 in general and administrative expenses and $15,297.00 in interest expense which was funded from advances by affiliates of $26,527.00, accounts payable of $60,376.00, accrued expenses of ($1,498.00) and services rendered for stock of $529,250. As a result, the company had a Net Loss of $645,181.00 for the second quarter of 2008. During the same period in 2007, the company incurred $71,025.00 in general and administrative expenses, interest expense of $4,810.00 and had a Net Loss of $75,835.00. Immunosyn has had no revenue to date as Argyll Biotechnologies, LLC is still in the process of obtaining governmental and regulatory approval for SF-1019.

"We have continued to significantly control costs this quarter and appreciated the advances from affiliates," noted Stephen Ferrone, Immunosyn's CEO. "In 2008, Argyll Biotechnologies, LLC has reported positive research results for SF-1019 and Immunosyn hopes to add shareholder value by striving for financial efficiency in the execution of its marketing and distribution strategy when approvals for SF-1019 are obtained by Argyll Biotechnologies, LLC," added Ferrone.

Research suggests that SF-1019 has analgesic properties with a perceived ability to substantially reduce the inflammation present in a number of clinical conditions including Multiple Sclerosis (MS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Reflex Sympathetic Dystrophy Syndrome, (RSD or RSDS) and other auto-immune and neurological disorders. A limited proof of concept trial for SF-1019 in Europe has shown positive results in effectively treating diabetic ulcers. Immunosyn went public in January 2007 and its stock began trading on October 26, 2007 on the OTCBB under the symbol "IMYN."

Sponsored by:
IMYN 1.70, -0.10, -5.6%) plans to market and distribute life enhancing therapeutics. Currently, the company has exclusive worldwide rights from its largest shareholder, Argyll Biotechnologies, LLC, to market, sell and distribute SF-1019, a compound that was developed from extensive research into Biological Response Modifiers (BRMs). Argyll Biotechnologies, LLC has initiated the process for regulatory approval of SF-1019 in several countries and preparations for clinical trials are underway in both the US and Europe. Research suggests that SF-1019 has the potential to affect a number of clinical conditions including complications from Diabetic Mellitus such as Diabetic Neuropathy (DN) and diabetic ulcers (DU), auto-immune disorders such as Multiple Sclerosis (MS) and neurological disorders such as Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and Reflex Sympathetic Dystrophy Syndrome (RSD or RSDS).

The above news release contains forward-looking statements. These statements are based on assumptions that management believes are reasonable based on currently available information, and include statements regarding the intent, belief or current expectations of the Company and its management. Prospective investors are cautioned that any such forward-looking statements are not guarantees of future performance, and are subject to a wide range of business risks, external factors and uncertainties. Actual results may differ materially from those indicated by such forward-looking statements.

For additional information, please consult the Company's most recent public filings and Annual Report on Form 10-KSB for its most recent fiscal year. The Company assumes no obligation to update the information contained in this press release, whether as a result of new information, future events or otherwise.
SOURCE: Immunosyn Corporation

The Blaine Group
Lisa Baker/Devon Blaine
310-360-1499
310-360-1498 (FAX)
blaine@blainegroupinc.com