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Hi Everyone- saw my neurologist today. He says that my nerves inside themselves are working. That yes my muscles are weakening and my nerve receptors are not always firing doesn't make it a neurological problem. That neuro means nerve function. And muscle weakness isn't always caused by a damaged muscle. Put it that way it all makes sense. Does it to others? Anyways, the nuero for the first time in over 3 years, of some 10 or 12 doctors stated honestly what is likely happening.

He believes I have several csyts in my head, one maybe two (that because of my arthitis) allows for cysts to move about- kind of consuming bone as it moves. As it gets bigger it can push bone on bone a part, it can push bone onto or into muscle, tendons and nerves. When this happens it may not be a nerve problem, but any other of those thousand of dieases. If the nerve pulse is stronge it isn't the nerve- can't be. We then need to move on to other reasons.

I had a MRI of my back last fall, that indicated I have arthritis throughout my spine. I had an ultrasound of the bump over a year ago, that clear define the main body of the cysts. Ding! Dong!:shock: My neck is stiff, my head has lumps and bumps on it, when pushed causes pain, my head feels like it's going to explored at some times with a tiny knitting needle going through my ears, my ears bleeding, I'm falling, loosing my balance, walking into things, dropping things all the time. Thus the pressure, arthritis, and bone damage all together allow space for these cysts to grow if disturbed. There are several different kinds of head cysts. These cysts are congential forming while in utro, as the bones develop small sacks of unused oils and other tissue are left in corners of forming joints and normally cause not problem.

God! I finally get what's wrong with me- can't believe a doctor hasn't put this together. I've had a problem with cysts all over my body and have had to have most of them removed due to pain. I've had neck and skull pain for years, so long I can't remember when it started- one can get use to pain- even bad pain. So he told me to get a good ENT/ Surgeon and have him access the bumps on my head.

The next question I have to figure out is- can I get surgery, will surgery help, will surgery reduce the pain, does the damage I have done to my muscles and nerves remain following surgery, does the cyst reform from the root and fill in the space again? If I don't get surgery will the growth- thus pain continue to increase.

What I'm trying to share with everyone is our bodies are so extremely complicated and interconnected. In ways that they are just now understanding. While I understand now why it is not ALS that I have; even though the same symptoms ocurr, it doesn't take the fear of the unknown away. In the end, we whose bodies are failing us will die. Unlike others who died instantly of a heart attack or stroke and I'm not saying these dieases are not as serious, but that death is usually fast, not months, years or decades and decades as it can be for some with ALS. It doesn't seem fair to me that some should suffer to such extremes while others don't. For those of you who have been going around in circles driving yourselves crazy with fear that you may have ALS- Take a breather - relax.

When people get ill, we need something to hold onto, that can help us make sense of our life, our loss of life as we live and the one that lies ahead of us. If people believe that ALS is the worse disease to die from, then I suppose they will stay caught in the fear that they have ALS when they don't. I have watched people die for 15 years and not one death was easy but each was memorable. Just as birth is tramatic as is death. Both birth and death are thresholds to different energes, Call it God, the Earth Mother, whatever- but that tranference of this kind of engery has to be shocking, and I think that maybe that's what we are most afraid of when we think of dying.

So tomorrow I call my ENT and insist I must see him. Get my MRI and ultrasound faxed to his office and go see him. I'll let you know if my diagnoses is right. And how knows maybe I'll have mre then just a few years.

Love yourselves and take care- Karin
 

Atsugi

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My wife the MD explained it to me like this:

ALS is the de-enervation of your muscles. Nerves don't work.

The nerves "feed" muscles, in a way that is not yet understood. When the nerve becomes non-functioning, the muscle atrophies.

An EMG test is the gold standard. If your neurologist performs an EMG, he'll tell you if you have ALS or not. Period.
 
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Other diseases can Mimic ALS- so be open and move forward

Yes, you are right- although EMG can be done too early to be clear.

What I was trying to explain is nerves can stop working even when they are stronge and effective if other problems get in the way of them transmitting signals and if this happens then it can appear that one has ALS. My post was intended for people who do not have ALS but appears that they may and don't know how to make that shift in their minds to accept this.

Once we get an idea stuck in our minds we need a lot of evidence to look at the possibility of other diseases. It's taken me this new information to let go of the diagnose of ALS.

But if I am not able to have all of my cysts in my head removed then my current sypmtoms which do resemble ALS will continue until either I have a stroke or some kind of damage from the growing pressure or from the symptoms resembling ALS. So for the time being I will try to get surgery and hope that there will be some relief for me and my syptoms will subside.

I only hope that other people who think they may have ALS or seem to have the symptoms of ALS are able to move forward to look at other diseases. I want to say that being in limbo is an awful place to be as I've been there for nearly 4 years. But once we get something the makes sense then we can let go and go forward.

Karin Bolette Sonne
 
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