Looking to connect with SM (non-CM) people.

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Re: Looking to connect with SM (non-CM) people.

Postby DEN » Thu Aug 30, 2012 3:02 pm

Oops, sorry.

Loved one had LP. Please excuse my pronouns (or lack thereof), this ordeal feels like I am experiencing the tests/pain/procedures as well. Luckily, there was no leak but she experienced a bad headache for a few days. Neurologist did put in an order for a blood patch, but did not go that route as the headaches resolved itself.

Chemistry testing back, all normal. No malignant cells, anti-bodies, proteins to be of any concern.

Figuring all this out is becoming harder by the day (or by the test result). :x
Supporter of a loved one with SM.
DEN
 
Posts: 14
Joined: Wed May 30, 2012 12:37 pm
Location: Seattle, WA

Re: Looking to connect with SM (non-CM) people.

Postby razzle » Thu Aug 30, 2012 3:18 pm

Gp I think they are 2 different things .... I never had either one ....
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
User avatar
razzle
 
Posts: 1876
Joined: Thu Apr 30, 2009 4:55 am

Re: Looking to connect with SM (non-CM) people.

Postby MsRiddle » Fri Aug 31, 2012 2:43 pm

Hi~
I have trauma induced SM from a motor vehicle accident. The accident occured in 1997. I recovered farely well but started having unusual symptoms in 2000. I misdiagnoised with a laundry list of things until I had my first MRI in 2002 and was diagnoised with SM. I was also diagnoised with Ehlers Danlos, teathered cord and Chiari Zero at TCI in 2008.
~No longer what I used to be - Not yet what I'm going to be.~
MsRiddle
 
Posts: 118
Joined: Thu May 24, 2007 6:18 pm

Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Fri Aug 31, 2012 8:02 pm

Here is a link that can explain what a myelogram is better than I can in text:
http://www.webmd.com/back-pain/myelogram-16147
Everything I've read says the oil based myelogram dye is really bad for nerves. The water based dye is safer (not risk free?) and thank you Graham for reminding me about that. I've been looking at other things lately and needed to take another look at that, and I think there is a connection I didn't see before.
If we want lots of information on the arachnoiditis subject I could text Terry, who has it, and see if she's up to being on the board.
Myelograms aren't the only thing that can cause arachnoiditis either. Anything that can cause the nerves around the spinal cord to get inflammed enough to react by forming a web of scar tissue seems to be on the list.

Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
phyrehawke
 
Posts: 628
Joined: Tue May 13, 2008 3:23 pm
Location: Southern CA

Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Sat Sep 01, 2012 12:12 pm

Let it be noted that this was written on the blue moon, even though I posted it afterwards. ;)

There are actually two theories that weave together and it would be cool if they could be reviewed or tested out to see if Boots/Janice and I were right on #1, and if #2 really helps us. Warning...this is long, partly because I've been told by a friend that part 2 is hard to follow, so I made more of an effort to make it clearer.

Boots (an old member who passed away several years ago) and I were both very interested in the glutamate (neurotransmitter) storm that happens after a spinal cord injury, and it often stays high in SM, and causes some annoying symptoms, like being prone to migraines, hyper-reflexia, etc. Having too much MSG in your diet just adds to the glutamate levels. We are often put on glutamate blocking medications for symptoms. We exchanged puzzle pieces in chat trying to figure out what good reason mother nature would have for doing this to us...like it had a preservative purpose because it's a "make it go" type neurotransmitter. Maybe trying to suppress it with meds wasn't such a great idea? Maybe mother nature had a natural system to solve the problems? So we talked about things. The doctors didn't seem to know at the time (lots of papers written on the subject) and we figured if we looked at the information enough we might be able to see what all this was for. Eventually Boots got too ill to work on it anymore with me. When I heard that she'd lost her coughing reflex, developed severe pneumonia, and nobody had realized it because the docs never check for stuff like that, that was our missing piece. She was hyper-reflexive just like I am...what reflexes were actually getting tested. Her coughing reflex was not getting tested and it was damaged. Maybe her glutamate levels had been high trying to preserve that core reflex as long as possible? As far as I understand, when a reflex is damaged the body can't raise glutamate to just that one reflex and bring it up to a minimum function level...glutamate probably has to raise evenly across the board so all the reflexes raise the same amount. So reflexes you really need might be working minimally, and you kick the soup out of somebody when they tap your knee. They mark your reflexes as "brisk", when most are that way because some are poor (but still working) that aren't getting checked. And then they put you on glutamate blocking medications for pain. If you already have some core reflexes that aren't being checked that are poor, and you are on more than one glutamate blocking medication, then doesn't that put you at higher risk for problems with a syrinx damaged reflex? (asthma, pneumonia, aspiration, choking, swallowing...oldtimers...sound like a familiar list? Is it the SM? Or the meds? I was surprised.)
It's food for thought anyway.
(I do take a glutamate blocker. I don't take 3. If you don't know what you're taking...you can always ask.)

Part 2
So spring '11 I fell on the stairs (hard) and hit my back, and I hit it where it always hurt before from the horseback riding accident. Bruised myself up good but I was very proud I didn't hit my head or neck! lol It ended up causing a wierd mess of problems, and by winter we were talking about some of them being caused by spinal cord pain, so I went to pain management. I had been noticing that some days for an inexplicable reason, it was much better, and then the rest of the time it was awful. I could not figure out what I was doing differently on those good days. That random pattern continued and they put me on a trial of methadone (since it seemed to be cord pain by that point) and it worked like magic on a number of longstanding pain problems...but not very well on the one I actually went there for in the first place. How frustrating. Every once in awhile though I would have a couple of days the pain was better, and then it came back. What was I doing?? I started paying very close attention. And I had been taught how to research info when I worked at the hospital, so I did a little bit of basic research. Because we discussed it, I knew many of the odd pain symptoms were due to my NMDA spinal cord pain reflex over-reacting to minor pain triggers. It's apparently really common in SM, and why they put us on methadone specifically, because they are finding a lot of drugs work on NMDA but few of them can get past the blood/brain barrier into the spinal fluid and bind with NMDA there. Ketamine is another one that can, but it has much stronger side effects. BTW, NMDA is a glutamate-receptor neurotransmitter, and methadone is a glutamate-blocker. (See previous discussion.) I was also taking topamax and neurontin, both glutamate blockers as well, and taking 3 at once was not a good thing for me.

Was there anything else I could add that effects NMDA to help stop that stubborn pain?
On the list of all the things that affect NMDA there is an amino acid...glycine. Could that be mother nature's way of dealing with the stubborn pain problem? I needed to try that out. I have a great site that lets me look up foods by amino acid (http://nutritiondata.self.com/tools/nutrient-search) and there in the list were the odd foods I was craving on the evenings before my good days! And the decisions I was making for breakfast on good days. So I made up a batch of whole food intentionally very heavy in glycine and that was extremely helpful in bringing down my pain level when the meds were not enough, and it brought it down dramatically. But glycine capsules by themselves on an empty stomach didn't work so great. They relaxed me but didn't resolve the spine pain. Why not? The glycine was missing something to cross the blood/brain barrier that was in the food, but not in the capsules...probably another amino acid. Long story short, it turned out to be two...serine (which we metabolize) and threonine (which we don't metabolize and have to get from food, usually meat, and I tend to eat like a vegetarian so it was missing when I took the glycine by itself). The 3 together make a protein kinase. From something I read I have a suspicion that there might be something else missing too, and it's probably a lipid and might be Vitamin D, because a lot of us seem to have issues with our vitamin D being low and it might be getting used up working as a neurotransmitter to help resolve high NMDA levels.

Doing the kind of art I do, when I saw glycine was the key amino acid things really clicked for me. One of the things I do is make different kinds of archival glues from scratch...out of hide glue, fish glue, egg white glair I make myself. These are all glycine glues, so I understand that this is a protein glue that makes cells stick together. To me, it is also hydrophillic (water loving) as a glue, and I don't know if it works in the body that way too but if it did that could regulate moisturize in the cells. It is very brittle and flaky when dry in a pure form, and must have things added to it to keep it flexible or to help it retain water. IF that's the case problems with that system may cause: dry skin? dry nails? dry eyes? inflammation? brittle bonds in scar tissue leading to arachnoiditis or nerve encapsulation layering as a compensation? degenerative joints? It could cause a lot of connective tissue disorder.
A genetic error causing problems with glycine could very likely cause something that looks like Ehler Danlos, DJD, sjogren's perhaps? You could probably go to town with that list around here.
So many of us run very low on vitamin D, some error with that may also be a problem with the system.

I am not a scientist. I found this pain solution and realized it was partially a cellular glue too, might be acting like a waxy oil under a certain circumstance, and looked at myself and all my syrinxed buddies and said "Hmmm...could I finally have what Boots and I were looking for?" We'll really never know unless I put it out there for somebody to look into, and I'd hate to take a potential solution to the grave with me just because I'm a little anxious about sharing my wierd thinking.

Glycine makes Jello gel up, and it holds your lunchmeat together. It holds you together. and your syrinx that isn't progressing but won't go away either...but isn't really bad enough to cause all these symptoms. When I started using the glycine/serine/threonine foods all the time I noticed some dramatic changes. One of the changes was that *off* the methadone...I felt pretty good! My occipital neuralgia quit driving me crazy 24/7. It didn't feel like I had whiplash all the time, and I could move my neck. Glycine also relaxes muscles (another thing we all seem to have issues with). It was about like being on the methadone...but with none of the side effects, and it was more effective in my opinion. I got off all of the methadone, all the neurontin, cut my flexeril down to 1/3 of what I was taking before (and it wasn't working well before and does now). I didn't expect it to fix so much, but I'm glad it did! I'm not pain free, but I'm down to something easy to live with on a lot fewer meds. Who doesn't want that?
I went back to my NS in late April and he said my testing shows everything pretty much stable like it was in 2006. So what caused my worstened symptoms and what resolved them and the pain? Have I figured something out?

I have had good minor changes that make me *wonder* if I have a problem metabolizing either glycine or serine (or both, glycine is metabolized from serine), and that may be a genetic thing that runs in families? Or just mine? I have a long narrow syrinx. My mom has a really short narrow one. We had a few relatives (all on one side of the family) with SM, all severe. A number of other odd things run in that genetic line. I know I have issues with this glycine+serine+threonine (+D?) amino acid combination. I don't know if the rest of you do or not. You may find it helpful to try and it's easy enough to do with common foods. It's nice to have something that helps resolve pain, in a way similar to pain meds, but without all the nasty side effects or brain fog.

I'd like to see some genetic testing done on people and animals on this issue. I know there are diseases of amino acid metabolism, but they usually only get attention when they are dramatic and I think this might be extremely subtle but affect a wide range of things we've all been blaming on SM but the syrinx is only a symptom of the underlying problem causing all the other problems, possibly some kind of (Kegg?) metabolic error. I was originally only looking for a pain solution alternative to methadone that would work in a similar way without wrecking my core reflexes, and that may be all I've actually found.
I'm not making a lot of progress on it anymore. I should let this go to somebody who has the education and resources to refine it, as the first one was given to me by Boots to finish, and maybe we can find out if it's going to be really useful information or not.
As usual, all I have is my unique perspective. ;)
Rozanne/phyre

Wishing to ride a purple pony on a blue moon...
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
phyrehawke
 
Posts: 628
Joined: Tue May 13, 2008 3:23 pm
Location: Southern CA

Re: Looking to connect with SM (non-CM) people.

Postby Graybo » Sat Sep 08, 2012 10:24 am

.
Last edited by Graybo on Wed Jan 09, 2013 1:55 pm, edited 1 time in total.
Graybo
 
Posts: 512
Joined: Mon Jun 04, 2007 11:06 am

Re: Looking to connect with SM (non-CM) people.

Postby phyrehawke » Sat Sep 08, 2012 7:13 pm

Since information has been shared with me on the subject very recently I did some looking around and found that while I'm not fond of MM "side effects"...hemp seed has a fantastic amino acid profile and a perfect balance of omega 3 to 6 oils as well. The oil looks similar to flaxseed oil in it's healthy effects. I knew both have no THC in them. Both the seeds and the oil come from the same plant as MM...this just isn't the flowering part. ;) It's edge on healing might be that it's a mighty protein/great oils packed into a little seed? I went to the health food store and bought some and 1 Tbls has 3.3grams of protein. That's concentrated for an unrefined non-meat source! So hemp seed and oil is another healing option to consider.
http://www.hempseed.ca/high-protein-food.ihtml

If you are interested in the story behind aspartame and MSG you might want to read this...
http://www.amazon.com/Excitotoxins-The- ... 0929173252
That got me off asparatame/Equal forever and always. I keep the MSG out of the house (and do miss cooking with some things), but I suspect I probably still get some when I eat out once in awhile. Cutting those out of my diet helped me be a lot less miserable. I'm not surprised my body throws a fit over the stuff...it's kind of franken-food. I do better on real food.
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
phyrehawke
 
Posts: 628
Joined: Tue May 13, 2008 3:23 pm
Location: Southern CA

Re: Looking to connect with SM (non-CM) people.

Postby stacy » Fri Sep 14, 2012 8:16 am

I did a quick google on msg. Interesting about the connection between headaches and msg. I've been eating a gluten-free whole foods diet (except when I slip up :P) for a couple of years now and it's made a big difference in headaches. I used to get them every day and now it's just occasionally. I almost always get a headache after eating at a restaurant and have to wonder if they sneak msg or something somehow on my meat and vegetables.
stacy
 
Posts: 13
Joined: Tue Sep 11, 2012 9:10 am

Re: Looking to connect with SM (non-CM) people.

Postby stacy » Fri Sep 14, 2012 8:30 am

Rozanne, that atlas orthogonal technique looks interesting. The adjustment is so gentle but seems to work for patients, that I have to wonder how easy is it to off-center the atlas just through daily activities. And could we do that adjustment technique ourselves? My latest MRI showed no disc herniation at C2-3 or C3-4, though, so I'm thinking this means my atlas is centered properly. :?:
stacy
 
Posts: 13
Joined: Tue Sep 11, 2012 9:10 am

Re: Looking to connect with SM (non-CM) people.

Postby stacy » Fri Sep 14, 2012 8:40 am

Ha, I don't think I introduced myself. Got caught up in the conversation. :lol:

Hi, everyone! I was diagnosed with SM in 2001. Neurosurgeon at the time said not to worry about it, so I didn't. Been in pain all these years, but managed it somewhat with exercise and good ol' Aleve. Latest MRI shows that the syrinx has remained stable. Also showed disc degeneration in the same area (cervical). Doctor says it's to be expected as we age (I'm 36 - I don't want to age that way just yet!). I'm guessing that this degeneration is what has been causing my spinal pain. So now of course I'm going to google the hell out of "cervical degenerative disc disease" until I find ways to reverse or at least halt the progression. :lol:
stacy
 
Posts: 13
Joined: Tue Sep 11, 2012 9:10 am

Re: Looking to connect with SM (non-CM) people.

Postby eebogan » Wed Oct 17, 2012 3:46 pm

I know this is kind of an old discussion but I have similar problems, SM with no etiology. I have done everything but a lumbar puncture. It is my last hope. I am just so relieved to see people like me! When looking on the internet, SM is so closely related to CM but they have pretty much ruled that out. I hate not knowing the answers. But my question is, I am new to this, just signed up a couple days ago, is there anyway to talk to specific people on here? To have more of a pen pal conversation?
Idiopathic Syringomyelia. Fibromyalgia.
"Life is what happens when you are busy making other plans." ~John Lennon
Feel Free to follow my blog:
http://bluemeanie21.tumblr.com/
eebogan
 
Posts: 10
Joined: Tue Oct 16, 2012 12:27 pm
Location: Dayton, Ohio

Previous

Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 5 guests

cron