I HATE doctors

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I HATE doctors

Postby Metalmommy » Tue Apr 30, 2013 11:00 am

I am so upset right now. In May I was rear ended, they found a syrinx from C7-T10 (there is like a vertebrae or two where there is no syrinx so I have 3). So I went to a neurologist, and he tells me my twitching, muscle spasm, and shaking are due to ANXIETY! Are you fucking kidding me? He believes my syrinx is to small to be doing anything, and that it's to low down to affect my arms. I told him I do have slipped discs in my cervical area. Oh then the dick said "there isn't much going on in the thoracic area so it shouldn't cause problems". Well why the hell does my back go numb? Why does the lyrica stop the twitching and helps with spasms. I am just so upset and I don't know what to do. I am so freaking upset right now I just want to cry. This is NOT in my head damnit. Something is WRONG and no one wants to admit its the syrinx. He believes a syrinx only causes pain, so yeah he's well read on the subject. I am so frustrated all I want is help. My first visit he said I have abnormal reflexes so he ordered a brain MRI (which he didn't even have a copy of the report btw) and now at this visit he says they are "jumpy". I hate doctors.
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Re: I HATE doctors

Postby Graybo » Tue Apr 30, 2013 12:44 pm

I think the biggest mistake drs make is saying the syrinx doesn't cause the problem but then blame us with the anxiety, depression or whatever and make out like we are crazy. It's their fault we get angry or frustrated, not ours. What they should do is understand about what causes the symptoms.

I have a very low opinion of most drs as well. I think there are very few drs who understand the importance of nutrition, and I have never met a dr that I would say was good at his job. Our food is so crap now that we don't get the minerals and other nutrients we need to help us recover. We are obviously designed to heal ourselves. Most people have become obsessed with pills for every problem and none of them work. They keep you on all this poison for as long as possible to keep you hanging on as a paying customer with you hoping to get some improvement, and it never comes.

Most of us on here have had the same kind of drs answers that you got. They say the SM doesn't cause all this and its all in your head etc. It used to get me mad too but now I understand what is going on with my SM and all the symptoms I have. I had an injury to my neck and also a previous low back injury too. My low back injury and my SM were caused by accidents many years ago. I have read in a few places over the years that the disablement that results from an injury, often ends up much worse than the original damage. I believe it is muscle tension and calcification of the muscles that might have been injured to start with, but then the tension caused a 'holding pattern' described in my Trigger point book. There seem to be a number of reasons why calcium ends up in the muscles causing hardness, stiffness and muscle twitches. I can reproduce my symptoms just by pressing on certain muscles and on the trigger points that form in them.

Calcium hardens muscles and can cause calcifications in soft tissues such as the muscles, heart, arteries, bone spurs etc. There is an article you can find in a search called - 'The Borax conspiracy' by Walter Last. It is easy to understand and tells you about the lack of boron (borax as used in laundry). One of the pages tells you how the body cells use calcium to contract the muscles and the amount of energy it uses to pump it out again. If you are low in energy due to poor food and illness, the calcium accumulates in the cells and causes hardness. Try laying your hands up the side of your neck and apply light pressure and I think you will find your symptoms increase. If the muscles are tender and hurt when touched - that is a sign they need to be released. Remember that you can get referred pain too - A trigger point can cause pain in other parts of the body away from what you think is the injured part.

Magnesium and selenium are very important and it seems boron is also important. Magnesium used internally and transdermally (absorbed through the skin) will help soften the muscles when used with selenium and/or boron. Transdmeral magnesium can help very quickly with cramps etc but you need to take selenium for several weeks before you notice a difference. Don't think that selenium doesn't matter just because it is a trace mineral - that was my mistake. I am hoping to get rid of my SM this year after 22 years with it. It is slow but I am making progress and I have got some muscles moving that have been seized up for years. I never realised how many muscle groups there are in the body that I need to work on.

Another point I think about is that most people I talk to who are ill seem to have one side of their body that has most of their health problems. You have to look at posture, the way you walk and stand, sit etc. One holding pattern described in trigger point is the round shouldered, chin pointing, we might do while on the computer - that causes neck problems. You might sit watching tv twisted to one side and the muscles get shorter on one side then pull unevenly, causing tension. I think it is important to try and stretch both sides of your body equally to straighten you out.
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Re: I HATE doctors

Postby pamela d » Tue Apr 30, 2013 11:40 pm


I have a very small syrinx, but do have a host of spine/disc problems. My doctors consist of a GP( I am her only Chirari I pt.), a Neurologist ( I see 1-2 times yr.), and now, a Naturopathic physician. The GP and NL at this point, have not been successful in helping me. The GP simply does not know what to do with me, and the NL has an arsenal of meds. she suggested, and each one comes with collateral damage.

Don't get me wrong, I am not opposed to traditional/western meds. and medicine, ( I take two different rx) but for me, I have started on a new path that merges them with getting back to healthy nutrition.

I think Grabo's comments regarding the body's basic nutrient needs is right on, as well as her comments about the muscle tissue. I have been working with the Naturopath dr. more than anyone else. In addition, I see a dr. in Henderson NV 2 x yr for ART (Active Release Technique). This modality is to help break up the muscles that are almost glued together. (for me because of inactivity due to pain and fatigue) This treatment is not for everyone, but it has changed the quality of my life for the better. For people with a syrinx, this may not be an appropriate approach.

My frustration with drs. is similar to yours and Graybo's. It is so maddening to pay to see a health care provider that seems to be working on autopilot. I do not know the reason that so many of us cannot get the help we need, and often have to push the health care providers to do anything for you! There are plenty of people with syringomelia and Chiari, but judging from the comments I read on the site about the treatment people rec. from some doctors, you would not know our diseases existed. On the other hand, I also read comments about great doctors, but those comments seem small in number.

The most important thing is to be your own advocate....do not take "no" for an answer, and if your doctor ignores you, does not get back to you, or brush you off, find another one, if possible.

I have been where you are at emotionally, many times, and I just want to scream at times.

I hope you get some answers soon. Don't give up.

Take care.
pamela d
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Re: I HATE doctors

Postby gunflint » Wed May 01, 2013 9:23 am

I've been fortunate in finding a good GP and I was lucky to be included in Dr Heiss's study but I have yet to be impressed by any neurologist or NS other than Heiss. I have been wondering off the reservation a bit and trying some of Graybo's advice and so far I'm impressed.
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Re: I HATE doctors

Postby Graybo » Wed May 01, 2013 10:02 am

Thanks for the comments from Gunflint and Pamela

When I say I don't think much of most drs I don't include drs that use natural methods. I find it annoying that the type of things I use are known as 'alternative medicines' when in fact it is the opposite. Real medicines help heal you, while pharmaceutical drugs just cover the problem up and even cause more problems; so they are the alternative to real medicine in my opinion.

The selenium and borax can cause a Herxheimer reaction or healing crisis, which can make you feel a bit worse to start with. If you have problems with it you just reduce the dose a bit and increase it when you feel ready. I usually go in at full speed and I don't care about a bit extra pain if I think it is helping.

The Borax seems to be a laxative for me so I cut the dose down a bit. here's a link to the Borax conspiracy, it's about 10 pages long - http://www.health-science-spirit.com/borax.htm -

Here's some of what it says -'Muscles contract when calcium moves into the cells, and they relax when calcium is again pumped out and magnesium moves in. This cellular pump requires much energy to pump calcium out, and if cells are low in energy, then calcium may accumulate inside cells.' - 'This then leads to only partial relaxation of the muscles with stiffness, a tendency to cramps, and poor blood and lymph circulation. The problem gets worse the more calcium moves from bones into soft tissue. Nerve cells can also accumulate calcium, leading to faulty nerve transmission'
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Re: I HATE doctors

Postby birdlover3 » Fri May 03, 2013 12:03 pm

I think the majority of us have gone through what you have. I had a neurologist tell me to just go get pampered at a beauty salon and I’d feel better. He said that’s what his wife did. Physical and mental stress will make our symptoms worse, but stress did not cause our SM and/or CM.

I was going to physical therapy because I was in a wreck & having a lot of symptoms. After I had a couple of surgeries for a few injuries, the symptoms stayed. I finally had a MRI that showed my CM and tiny SM. I was lucky to have physical therapists that knew about SM and CM. They not only gave me a list of stretches to do, but they also suggested vitamins. Graybo has given me a list of even more to take. The Borax Conspiracy was informative.

As mentioned, don’t give up hope. It’s been a while since I had to go to the ER but all of the ER doctors that treated me knew about CM & SM. If the ER doctors knew about CM and SM, then hopefully other doctors will learn about CM and SM too.
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Re: I HATE doctors

Postby omz » Sat Jun 01, 2013 6:52 am


what were the stretches the therapist recommended?
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