edss scale

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edss scale

Postby Terry » Wed Oct 31, 2007 4:17 am

For those of you who are a 4,5,6, etc, do you move between the numbers?
Are there times when you are a lesser number? When diagnosed, I was probably a 6 (just guessing here) and now I'm lower. Someone posted that the first 5 years after diagnosis was a cake walk. Is this the norm? For those of you with a longer history of this and higher numbers, tell me about whether the numbers get low- like a 3, or do they stay higher?
Also, I'm sure you'll think I'm a nut for asking, but do you all have freckles? I've read about the viking gene, but aren't there people with the viking gene who have few freckles? In my community, those I know who have been diagnosed with MS have many freckles. I ran into an old high school friend and she told me she was suspected to have MS, and then was told she didn't. She has lots of freckles and my first and lingering thought was that a definite MS diagnosis would come. I based this solely on the freckles.
I also have a question about iron. I read that those with MS tend to have a low supply of iron- thought "okay" I need to take an iron supplement. Then I read that the iron stores in the BRAIN of people with MS tend to be too high. The iron gets in and then the scarring keeps it from travelling out. Any thoughts on this?
Forgive me if my questions are odd- been reading on my own and need some input.
Terry
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Re: edss scale

Postby HarryZ » Wed Oct 31, 2007 4:58 am

Terry,

As we see often, MS patients can have an initial serious attack which can put them flat on their back for several weeks. Then they recover, usually with some minor residual neurological symptoms. The patient can remain this way for several years before the disease comes back again.

Having said that, MS is one of the most unpredictable diseases around and one can only speak in generalities about it. Each patient follows a slightly different path and it is impossible to predict what will happen in each case.

My wife, had her initial attack in 1971 and then recovered. She went 20 years before the MS came back again and then it slowly progressed to SPMS.

As for the freckles as part of a diagnosis...I wouldn't spend any time on that one.

My wife didn't have an iron problem until the last year of her life...and she ended up with too much of it in her organs. Her marrow was producing large red blood cells but they never discovered as to why. I would get your iron levels checked once a year and monitor it that way.

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Thank you

Postby Terry » Wed Oct 31, 2007 5:17 am

Harry,

Thanks for your response. There is just so much to try to understand! I'm new here, but I saw your post about your wife, and I am so sorry! I hope you are doing okay.
I can't seem to get the the doc without having cofee first for him to do the blood tests. I'll get that done soon. I will have quite a few things checked, I think. Any suggestions on that? What tests should I ask for? My doc is a holistic health doc and MD, and he admittedly hasn't treated a lot of MS patients, but after my experience with the neuro, I'll take him ANY DAY! He has a few MS patients at least. I am certainly not his first.
So out of curiosity, did your wife have freckles? Why should I not spend time on that?
Grasping in the dark,
Terry
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Postby MaggieMae » Wed Oct 31, 2007 6:00 am

Terry,

Get your vitamin D levels checked. The test is serum 25 hydroxy vitamin D or 25(OH)D. Do some searches on this subject and you will be amazed by the many reserach papers. I'm not saying it will cure you, but it may help. Bet your levels are low; my husband's were very low.
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Postby cheerleader » Wed Oct 31, 2007 6:44 am

Hey Terry...
Sorry that you find yourself on these boards, but welcome! Keep asking questions and looking for answers, and know that others all around the world are doing the same thing.

As far as freckles and MS...there probably is a connection between folks who have melanin issues. Yes, my husband is very freckled (dx MS in March 07) and he is very light skinned. He also has sleep issues. Melatonin is the flip side of this coin, as the pineal gland responds to environmental light and dark. And of course, now we all know about Vit. D. Sunlight and the brain's hormonal response is probably part of the MS equation. That said, try not to dwell :)

We had my husband's hormonal levels checked; to make sure adrenal/thyroid/pineal gland were all working. We also got him a photo therapy sunlamp, for indoor use since he's inside working most of the day. Sits above his computer. Folks who suffer jet lag, work swing shifts or have seasonal affectation use it. Will help vit. D as well.

all the best,
AC
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Re: Thank you

Postby HarryZ » Wed Oct 31, 2007 9:15 am

Terry,

You have already got a few responses to what you should get checked in your blood work. I would add zinc levels and B12 to that list.

A note of caution re your holistic doc....if he has not had much if any experience with treating MS patients, then you have to ask the question if you want him to be learning this at your expense. It is certainly a good idea to sit down with him and ask what he is prepared to do to update himself on the treatment of MS patient in his field.

And yes, Marg had freckles but I know many MS patients that don't. She was always very susceptible to the heat and sun with her MS. That got reduced a fair amount when she started on Prokarin (transdermal patch of histamine diphosphate used in the treatment of MS symptoms.).

Hope this helps.

Harry
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Postby Loobie » Wed Oct 31, 2007 10:01 am

I wouldn't spend too much time on the freckle thing either. I'm a dark haired, brown eyed, gets really tan in the summer type of guy and have no freckles. I do agree with the 5 year thing. Mine seemed to be very mild the first 5 years or so.

Also, the lady who gets Tovaxin on the same schedule as me is black and has no freckles. I reallly wouldn't spend much time going down that road. Whether you are on to something or not, I doubt there is much published. In other words, you could be so right but not be able to do anything with the info. since I've never seen anything on the freckle thing.
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Postby MaggieMae » Wed Oct 31, 2007 11:35 am

Cheerleader,

I've been considering a sun lamp for the Vitamin D. What type did you buy? I've done some research, but haven't talked to anyone who actually bought one.
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Postby Lyon » Wed Oct 31, 2007 12:44 pm

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Last edited by Lyon on Sat Dec 03, 2011 6:02 pm, edited 1 time in total.
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Postby Terry » Wed Oct 31, 2007 5:57 pm

Thank you all for your replies. Thank you for letting me ask and being kind enough to answer.
I'll let this sink in for a bit but I am full of questions, so I expect I'll have more for you all.
Harry, I know what you mean about the doc I see, but I am comfortable there. I've never been one to go to the doctor much and the neuro was horrible and his staff was as bad or worse.
I also have never taken many meds, so all this freaks me out a bit. My little homeopathic remedy and a vitamin and fish oil is where I am comfortable now. I realize, more today than ever, that this may not be enough. I'll get the testing done (please let me know if you think of more I should have) and go from there.

Sad but determined,
Terry
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Postby cheerleader » Wed Oct 31, 2007 9:18 pm

Hi MaggieMae!

I got hubby the Naturebright "Inspiration" table lamp. www.naturebright.com
It sits above his computer monitor, so that his face and arms get the light while he works, but it doesn't shine directly in his eyes. There are also settings on the lamp to wake up to, instead of an alarm clock, if you use it by your bedside.

The retina picks up the blue light signals, sends messages to the pineal gland and hypothalamus. Helps sleep cycles and mood. The light on the skin ups the production of vitamin D. My husband has it on 5-6 hours, so we didn't go for the super big light box model. You can get a much stronger lamp to sit in front of for a half hour, and have the same effect...but I liked the idea of a more "natural" light in my husband's office during his work hours.

I do think there's a connection between light, vitamin D, melatonin, melanin and hormones for MSers. Maybe not as "black and white" (pun intended) as skin tone...but more about how well the pineal gland functions. That's maybe why the vitamin D deficiencies, sleep and mood problems show up. This has been discussed before...

http://www.thisisms.com/ftopicp-10437-.html

later,
AC
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Postby Wonderfulworld » Thu Nov 01, 2007 12:58 pm

Hi Terry
I hunted so hard for answers, anomolies etc for the first two years after diagnosis. For a long time my particular obsessions were levels of uric acid, estriol, sunshine, hygeine hypothesis, gluten intolerance, differential diagnosis like neurosarcoidosis etc etc. There's LOADS of odd stuff out there about MS - but dunno about freckles! I have very few, love the sun and tan easily. I don't think there is any one answer to MS that anyone has found yet, or is likely to find for some time....

Re. the EDSS I was a 9 during my first big relapse, then went to a 5 for a while, then a 4, now a 3 I think, but not sure because neurologists keep forgeting to add in my totally deaf ear into the score. I am 9 years since diagnosis now.

I can understand the uncercertainty about treatment options etc. I too was very holistic when I was diagnosed and hated the idea of medicines. It took me 6 months and the realisation that this was lifelong and could come back and bite me in the a*s badly that I should be on something stronger than homeopathy. But you know, each person has to make their own decision about what's right for them. Keep an open mind when considering your options, it will help. :wink: and see if you can talk to a local MS group or to people online like this msg board. Knowledge is power, and all that.....
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Postby AllyB » Thu Nov 01, 2007 1:03 pm

Hi Terry

Just a quick one on edss - I was minimally affected for the first few years of my disease, then kinda jumped to a 3 / 3.5 on the edss, was stable again for a while, then had a couple of bad relapses close together and went up to a 5 or 5.5, and I started Avones. I have been on Avonex for about 8 months and have had no further relapses (obviously I cannot say if this is the Avonex or the normal course of the disease :lol: ).

I began supplementing and doing some stuff my physio recommended and my walking is improving - to the point that although I still use a cane, I managed to take my kids trick-or-treating last night and walked quite a few blocks, slowly, but was fine - paid a bit today though, but it was worth it! I would not have been able to do this just 3 or 4 months ago...

The other areas hit by these bad relapses were my bladder, balance, rt arm and hand (weakness and sensory loss, poor fine motor skills), and bad L'Hermittes, fatigue and pain, and these have not improved as yet.

I am still hopeful that there will be some more improvement as nerves repair/re-myelinate very slowly, and I believe that I have not gotten worse lately, but am slowly getting a little better. I am not sure how much better, but I would love to get back to a 3 or 4... :wink:

So, to echo the others, the disease is very unpredictable, and although it happens to many that their edss improves once relapses are over, to others, it worsens, and only time will tell...I think, for most with rrms, the first few years of the disease are relatively mild, but this is a generalisation - there are some who always completely recover from every relapse during the entire course of the disease, and others who show a steady decline. You seem to be fortunate in that you are showing some improvement, which is fantastic!

Your other queries - I am very fair skinned with hair a sort of copper/blond colour (it was a darker copper/red when I lived in the UK), but no freckles...! I live in a country with a very harsh sun, so I am careful not to burn - I have never heard of this Viking thingy, but I was born in Ireland (often invaded by the Vikings!), and have typical Irish colouring. My Mom, however, had black hair and brown eyes...

I have excellent iron levels with a good hb too, so no link there....

The folks here have given great advice on other tests to take and I can't add much, except to say that if you are on an interferon, in addition to the liver enzymes and CBC with differential, that they normally check periodically, get your thyroid levels checked too, as the interferons can make your thyroid a problem (hypo) - I just started eltroxin as my thyroid has gotten a bit lazy because of my Avonex!

All the best.
Al
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Postby TwistedHelix » Fri Nov 02, 2007 6:51 am

Hello Terry,
Having your thyroid function checked is a good idea: it's something that Italian researchers have been very interested in for a long time in relation to MS; I know that some years ago they used to offer a 24 hour monitoring test of the T4 hormone, (thyroxine), which is much more thorough than the standard tests and showed up malfunctions that were previously missed. Thyroxine has been shown to stimulate oligodendrocyte precursor cells:

Thyroid hormone activates oligodendrocyte precursors and increases a myelin-forming protein and NGF content in the spinal cord during experimental allergic encephalomyelitis
Laura Calza*,,, Mercedes Fernandez*, Alessandro Giuliani*, Luigi Aloe, and Luciana Giardino*
* Department of Veterinary Morphophysiology and Animal Production, University of Bologna, 40064 Ozzano Emilia, Bologna, Italy; Pathophysiology Center for the Nervous System, Hesperia Hospital, 41100 Modena, Italy; and Institute of Neurobiology, Consiglio Nazionale delle Ricerche, 00137 Rome, Italy
Communicated by Rita Levi-Montalcini, Institute of Neurobiology, Consiglio Nazionale delle Ricerche, Rome, Italy, December 27, 2001 (received for review November 21, 2001)
Remyelination in the adult central nervous system has been demonstrated in different experimental models of demyelinating diseases. However, there is no clear evidence that remyelination occurs in multiple sclerosis, the most diffuse demyelinating disease. In this article, we explore the possibility of promoting myelination in experimental allergic encephalomyelitis, a widely used experimental model of multiple sclerosis, by recruiting progenitors and channeling them into oligodendroglial lineage through administration of thyroid hormone (T4). A large number of proliferating cells (BrdUrd uptake and Ki67-IR) and the expression of markers for undifferentiated precursors (nestin) increased in the subventricular zone and spinal cord of experimental allergic encephalomyelitis animals. T4 administration reduces proliferation and nestin-immunoreactivity and up-regulates expression of markers for oligodendrocyte progenitors [polysialylated-neural cell adhesion molecule (PSA-NCAM), O4, A2B5] and mature oligodendrocytes (myelin basic protein) in the spinal cord, olfactory bulb, and subventricular zone.


With regard to iron, I have a sneaky feeling that heavy metals, or at least the way our bodies use them, might have a role to play. This website http://www.markpurdey.com/ is one I've mentioned before: be aware when reading it that this man's conclusions were sneered at by the scientific establishment, however since his death " proper" scientists have discovered extremely high levels of aluminium in the urine of those with RRMS, and very large amounts of iron in the urine of those with PPMS. Whether this indicates a high environmental concentration of these metals or a failure of our cells to use them properly is open to question.
Dom
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Postby AllyB » Fri Nov 02, 2007 1:53 pm

Hi there Terry

Just a comment on Dom's post - my TSH was actually fine, but my free T4 was way too low (the range was something like 0.35 - 4.5, and mine was 0.2 - your values may be different in the States), so just a screening test is not adequate, you need the breakdown of the results to get to the root of the problem. It was actually my oncologist who did the test (my neuro did not think it was necessary) and she had done it the previous year and it was fine, so she laid the blame squarley on my interferon therapy (she uses it a lot for cancer treatment) - says is is a common side effect...! I have been on Avonex for 8 months now.

Cheerio
Al
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