MS questions

[Bill]

Hi everyone! I know this question is way off of the beaten path for the site, but I know that someone here can help. In a nutshell, I've got a friend who's got a sister who is concerned that she may have MS. I know nothing about MS, but I thought that maybe someone here could help. My friend's sister is 46, and in very good health. Several weeks ago, she began having numbness/ pins and needles in her right arm from her elbow down to the tips of her fingers. 15 years ago, can't remember why, she had a brain MRI and it showed a "spot" that may have been a tumour, couldn't be sure, it was very small. Let's keep an eye on it type thing. Been fine since then. She has no history of cancer. She went to her GP last week, neurologist yesterday, and an MRI scheduled for Monday. It's good that she has a baseline MRI from 15 years ago. The docs. indicate that there is no test for MS, that they just rule out everything else. Is that true? Her arm is bothering her more now and she is keeping it close to her body. She has no headaches. A pinched nerve in the elbow or injury has been ruled out. We will welcome any advice or comments. Thanks in advance. Bill

[Mary Jo]

Hi Bill,

Although I can't really answer your question (then why am I posting?http://her2support.org/vbulletin/images/icons/icon7.gif) I have an aunt, an uncle and a sister in law with MS.

All I can tell you is that they had "odd" symptoms and they did a lot of different tests. I do remember that after having an MRI there were a lot of "spots" on her brain and that confirmed the MS.

I know that probably didn't help much but it's all I know.

Love & Peace,

Mary Jo

[Bill]

Thanks, Marejo, that does help, actually. It confirms the weird symptoms and multiple tests type thing. I hope you are well. Love and peace to you also, Bill

[Joan M]

Bill,

My sister had MS for 34 years, having developed it at age 17. At that time there were no MRIs and she was given a spinal tap after developing the classic symptom of a drop foot. She "recovered," married and had two boys. Today she would have been a grandmother.

About seven years ago I had symptoms of feeling off balance. Perhaps it was hormonal because I had just had a full hysterectomy, but the doctor ordered a brain MRI just to be sure. If your friend's sister has MS it would probably show up in the scan. Although there's a small chance that MS would be missed on the scan, since your friend's sister has symptoms of the kind you describe, that would mean there would be a lesion big enough to be seen.

I hope she'll be okay. Perhaps she has a pinched nerve in the back or particularly in the neck which can cause those kinds of symptoms.

Joan

[Monica]

Hi Bill,
I had some similar symptoms about five years ago, numbness, tingling in my legs. That progressed to muscle spasms and other symptoms. My brain MRI showed nothing. I also had a spinal MRI which is more associated with the type of symptoms your friend is having. However, my spinal MRI, where it is more difficult to identify MS looked fine. I totally changed my diet and started taking some herbs, and it stopped progressing and am doing very well. They also can take your spinal fluid, which can indicate whether you may have MS. That test can be very painful, and I was unwilling to do that. The bottom line is that it can be very difficult to diagnose in its early stages. However, there is a catch - more and more studies are showing the earlier you treat it, the better.

I hope this helps. Having had both cancer and possible MS, MS for me was much more frightening. There is an unpredictability about the disease and people not really understanding what you are going through that makes the disease a real challenge.

I hope everything turns out well for your friend.

Best,
Monica

[emily]

Hi Bill,
I have been diagnosed with MS for about 15 years. My symptoms were very similar to your friend and I also had one small hotspot on a brain MRI. I waited a few years-mainly to finish some post grad study- before I went ahead and had nerve conduction tests and the definitive spinal fluid test. It did come up ositive for myelin sheath damage and the protein that indicates MS. At the time I was absolutely devastated as I work as a teacher/researcher in the diability field and had too much information!! fifteen years down the track my symptoms have not changed too mcu although I do get pins & needles in hot weather & suffer from severe fatique. My mobility hasn't been affected and I feel very lucky for that. There are a few types of MS and some remain quite stable. How old is your friend? I was 41 when diagnosed and I think a later diagnosis is better. I do find that my immune sytem is a little compromised and maybe that's why I have breast cancer. However, the most important thing is not too panic and to find a very good neurologist who communicates well. (I'm in Australia so can't help there!) If I can help in any other way please feel free to contact me.
Regards,
Emily

[emily]

Just re read my post and saw all the typos! I'm working with one eye at the moment as I have bells palsy one one side of my face. It's reasonably common in people who have MS and others but doesn't usually leave any side effects so no need to frighten your friend. Do let her know that if she had the brain hot spot 15 years ago and is just showing any other symptoms then she is doing extremely well. There is no absolute test and they try to rule out all other possibilities first as you suggest. However the most intrusive thing is the lumbar puncture to collect cns fluid and it usually determines the diagnosis.
Best wishes,
Emily

[kcherub]

Bill,

My husband actually works at an MS Center...

I will ask him to read this, and send you a PM tomorrow.

Take care,

[AbbyDawg]

Bill,

I haven't been posting much because I haven't been feeling well. Am 9 months into the TEACH study. As soon as I can, I will be happy to talk to you about MS. I have had it at least since 1983 and possibly since 1976. In 1976, I got Lyme disease which went untreated until 1991 because there was no test for it until then. The Lyme infection eventually brought out MS.

I have been treated for MS since 1997. First with the beta-interfuron injections, which were too hard on me. They are former chemo drugs and gave me the chemo side-effects. Eventually they came out with Copaxone, a daily injectible that is not a beta-interfuron. I have been on it since 2001, and it works wonders! Tooks away my tremors and I feel about 20 years younger. Hmmmmm, that is until 2006 came along and I met up with DCIS and IDC Her2+. Uffda! The worst mistake I made though was I stopped Copaxone during chemo and surgery ... I did go back downhill with my MS symptoms but am now getting on track again.

One suggestion for your friend, the easiest thing to do is go to someone who is very familiar in her area with Lyme disease and have them do a blood test to see if it is Lyme. Lyme mimics MS and is MUCH more successfully treated!

The BEST suggestion is that she find top TOP neurologist in her area and one she likes. Neurologists are a strange bird: they are some of the finest doctors but not naturally "outgoing". I have always said neurologists are my favorite doctors but that is because I love to pick their brains and they seem to enjoy that. Of course, now my oncologist has jumped to the top of my FAVORITE List!!!!

Bill, you have been a saint on this board!

AbbyDawg

[AbbyDawg]

P.S.

Those early white spots on MRIs are termed in neurology/MS slang as UBOs ... Unidentified Bright Objects.

It is great she has early scans on them. They are tracked over the years in regard to MS and can be an indicator or explaination of "weird" neuro. or cognitive symptoms if the symptoms ever line up to that area of the brain. It is great info. but over the years I have gotten the impression they are more indicators than any danger. I was never led to believe they might be a tumor (but that was in my own case). So over the years as I go into another MRI, I always ask them to "Say Hi to my Leeetle Friends," so they won't be shocked when they see my UBOs.

AbbyDawg

[AbbyDawg]

Hi Joan!

Where are you from in NY?

SUNY on Long Island saved my life. There were three of us in MN with advanced Lyme in the 1990s and I am the only one that survived. And I was the only one that fought to get treatment in NY. I felt the best treatment would be to go to doctors as close to Lyme , CT, as I could get. Then noticed most of the top researchers were at SUNY.

I hit the jackpot. I DID have Lyme and they treated it with IV antibiotics and not steroids. Those who had advanced neurologic Lyme here in MN, most drs. were convinced it was MS, so used steroids, and the infections ran wild and patients died. My dr. at SUNY is Dr. Patricia Coyle ... one of the top Lyme researchers in the world AND one of the top five MS doctors in the world ... a match made in heaven for me!

After my Lyme IV treatment, tests eventually showed my infection had brought out MS, and with the new non-steroidal treatments, I was on my way. But I lost two dear friends, Hillary and Joanne, in the process.

I agree, the next step after MRI is lumbar puncture. Not a pleasant test but easier at first. I have had 18 of them over the years. First ones easy but now I have scar tissue so I avoid them unless absolutely necessary ... which is hardly ever after years of firm MS diagnosis.

AbbyDawg LOVES NY!!!!!

[Lani]

of the space around the spinal cord(the second being MUCH less likely) as a cause of her symptoms if they it turns out that she does not have MS.

Best of luck!

[Bill]

Thanks to all of you! We've gotten some great information here. (Thanks for your kind words Abby) Like many of you, I could be a pretty good street oncologist, but know nothing about MS. Thanks again.

[R.B.]

It all interconnects - what happy coincidences - The post on MS by Bill, and Hopeful of an MMP9 all come together at the same moment in a search for an article on MMP9 omega six and gene expression.

Conclusion Omega 3 suppresses MMP-9 which is a marker of MS and BC

http://www.springerlink.com/content/963788775224p348/

"The treatment with both ω-3 PUFA and fish oil dose-dependently inhibited the LPS-induced production of MMP-9. Our results suggest that a low fat diet supplemented with ω-3 PUFA may become recommended for the well being of MS patients under therapy."

MMP9 has been on my list of interest. I do not know exactly what it is, but saw a trial a long time ago that I will dig out that suggested the omega 3 and 6 significantly change gene expression of MMP9. I have been wondering ever since how MMP 9 related with BC.



This was posted in articles of interest
http://breastcancersource.com/breastcancersourcehcp/6096_33648_0_0_0.aspx?
2 June 2008
Urine biomarker test confirms breast cancer precursor lesions
MedWire News: Matrix metalloproteinases can be detected in the urine of women with atypical breast hyperplasia and could form the basis for an accurate and convenient test for invasive breast cancer risk, researchers claim.

"Once validated in larger studies, such a test could potentially provide a useful adjunct for breast cancer risk assessment," Marsha Moses (Harvard Medical School, Boston, Massachusetts, USA) and colleagues comment, adding: "The goal of identifying women at high risk of developing breast cancer and providing safe effective risk reduction to this group is compelling."

Matrix metalloproteinases are required for the "angiogenic switch" - an early and critical event in breast cancer growth and progression, Moses et al explain in the journal Cancer Epidemiology, Biomarkers and Prevention.

Matrix metalloproteinase 9 (MMP-9) and a disintegrin and metalloprotease 12 (ADAM 12) are two established serum biomarkers in breast cancer.

[Bill]

Connecting the dots, RB. Thank you. By the way, what do you think of the "Smart Balance" products?

[Bill]

Thanks again, everyone. Got some good news here. My friend's sister met with her neurologist today and he feels that she probably has a pinched nerve in her neck area. She will have an MRI on Thursday and will know something for sure on Friday. I will pass on any news. Thank you all so much for your help. Bill

[Joan M]

Bill,

Glad to hear that your friend does not have MS and hopefully some physical therapy will help with the pinched nerve in her neck.

By the way, your grandaugher is totally adorable. She looks like she's a redhead.

Joan

[Bill]

Thanks, Joan! She is a red-head and it's hard to tell from my cell-phone picture, but my daughter, Erica, is, too.

[Bill]

Hi everyone! Thanks again for all of your support and prayers. Good news- an MRI showed some sort of nerve problem along her spine, and the doctor has recommended physical therapy. Everyone here was just shook up because of the strange "spot" in her brain MRI 15 years ago, and now fearing the worst. Thanks again, everyone. My thought and prayers go out to you all. Bill