Old 04-20-2011, 12:21 PM #1 (permalink)
Mama Patch
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Mama Patch
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Question Alone and lost

Let me begin by apologizing. My thoughts have a tendency to jump all over, making it difficult to follow my thought patterns. Please be patient with me.

I'm a 44 yr old single mother of 2 wonderful young men aged 23 and 18, both live at home with me. I stopped working almost 4 years ago, and since then I have been taking care of the grounds at the co-op where I live. This includes cutting the grass, planting and weeding the gardens, planning and digging new gardens, and just generally keeping the Co-op grounds looking good. In addition, I also have a very small business selling handmade chocolates, candies, and baked goods and I am an artist as well. Needless to say I have a very active, busy lifestyle.

As a child, I suffered from Petit-Mal (absence seizure) epilepsy, and although not diagnosed till many years later, also ADHD and Asperger's syndrome. I haven't had a seizure for more than 30 years. The only medication I am currently taking is Synthroid Levothyroxine Sodium 75MCG, for a borderline thyroid. It's been borderline for over 20 years, although I only started taking the medication approx 3 years ago. All thyroid tests show the medication is working. I do not drink at all, not even on special occasions, I do smoke. I also suffer from Anarexia, (at least that is what the doctors are calling it) a condition that seems to have started around the same time as the rest of my symptoms, but this is not the Nervosa type. I don't believe I'm fat, if anything I am ashamed of what my body has become. I'm 5'3 and normally I weigh between 130 and 140 pounds. I have always had an athletic, well toned body, with just a slight muffin top belly. Now I look and feel like a walking skeleton. I have lost so much muscle tone in my arms and legs that I'm disgusted when I look in the mirror. I don't keep a scale around the house, but at my last weigh in at the doctors office I was down to 97 lbs!

In the fall of 2008, I started having fits where I would just start crying for no apparent reason. They came on so suddenly and strongly, without any provocation, that they led me into a serious depression in which I tried to kill myself on 2 separate occasions. Both times I was admitted to the hospital. Both times I was sent home shortly after with no support. In the spring of 2009, I started waking up in the middle of the night on a semi-regular basis with tingling in the thumb, pointer and middle fingers of my right hand. At first I thought nothing of it. A few weeks later it progressed to shooting pains from the elbow down. I put a tensor bandage on it and googled what it could be. My research soon led me to believe I might have a mild case of carpal tunnel syndrome. So I nursed it as seem appropriate when it was bothering me and ignored it when it was not. I started having shooting pains down my arm whenever I tried to lift something over my heart, liking taking dishes out of the cupboard, or trying to pour a cup of tea. A couple of months passed with no relief when I started have similar tingling in my pinky, ring and half of my middle finger on the left hand. Google some more and figure, maybe it's time to talk to my doctor.

My doctor referred me to rheumatologist, a respirologist, and a neurologist, plus had me go for chest x-rays and an MRI. The MRI was "basically" normal. That was all the information they would give me. I have no idea what that means. Upon examination, the rheumatologist, noticed hyper-reflexes and reduced muscle capacity in my right thumb. Her original diagnosis- fibro. She started me on a regimen of Lyrica. I took it for just over 3months with absolutely no effect. On a return visit I was told we would just have to wait till it got worse, before we could know anything for sure! The neurologist performed a physical exam and sent me for an EMG and NCV. Nothing remarkable noted. My last visit to the neuro was Oct 2009.

Since then I have developed problems with walking. Originally it was just my left leg. It started just about a year ago now, I have problems putting all of my weight on it and the foot has turned out and dropped. Most days it feels as if there is a 50lb weight on my ankle. Then just about 4 weeks ago, my right leg started to give me problems. Although not as bad as the left, it feels the same. About 6 weeks ago I started to get a tingling sensation down my spine. It started off about an inch long and was located right between my shoulder blades and was aggravated whenever I used my arms for prolonged periods such as when doing dishes or kneading bread dough. In addition to all this I now have regular problems with swallowing. It doesn't happen all the time but at least a few times each day, usually when I'm eating or drinking something sweet, although again not always, I will experience a tight muscle pain right at the base of my jaw under the ear.

Now as if all this isn't enough, there is also my memory. Never the best to begin with, I find that I am loosing my words. More often than not, words simply escape me. I understand this is something that everyone struggles with from time to time but this is ALL THE TIME for me. In addition, I find that I simply can no longer trust my memory. My kids are subjected to constant re-telling of things because I simply do not remember the first, second or even third time I told them before. But the worst part of all is that I can't remember how to do simple things I've been doing all my life, like how to make a cup of tea, when did I last feed the cats, did I take my medicine, did I make the phone call I was supposed to, and if I did, what was said? And yet I can remember glancing at my mothers calendar and seeing that she has a hair appointment next Wednesday at 12, and I can remember that my son's culminating project is due on May 11.

On February 28th, I went to see my doctor again, who has referred me to another rheumatologists and another neurologists. The rheumatologist appointment is in May and the neurologist appointment is until September.

As it stands right now, I am not receiving any assistance with managing my symptoms, and they are taking their toll not only with myself but on my children as well. My oldest son also has aspergers' syndrome, and suffers unbelievable anxiety attacks that have taken over his life and made him agorophobic. It has become so bad that he is no longer able to work or even leave the house, and I know it's because of me.
Does this sound like ALS? Does anyone have any coping stratagies they can share with us while we go through this process? Due to the nature of the AS, I don't have any friends and no one to sound board off, so any insight is greatly appreciated.
 
Old 04-20-2011, 01:36 PM #2 (permalink)
brentonjb
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brentonjb
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Default Re: Alone and lost

I'm very sorry to hear about your struggle. It sounds like you've gone through a lot, not just with your own issues, but your son as well.

The good news is, unless I misread your post, is that the fact that you've had both clean EMG's and NCV means you do not have ALS. Likewise, none of your symptoms point towards having MND. So please. do whatever you can to get that out of your mind. As the stress and anxiety will only make your life that much more difficult. Often times the mind can play terrible tricks on the body, especially when you focus on it, or perceive things that truthfully aren't there.

In waiting for your coming appointments, I would suggest trying to see a Psychiatrist if you're not already. At the very least, it will help you deal with any stressful, or emotional issues you may be dealing with. Simply talking to someone can sometimes be the best medicine. Best of luck to you.
 
Old 04-20-2011, 03:20 PM #3 (permalink)
Mama Patch
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Mama Patch
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Default Re: Alone and lost

Thank-you for your kind responses, there were quite a few things I forgot to mention. My eating habits are good. I do not eat fast food and I prepare all of my families meals from scratch, including breads. We always have fresh fruit and vegetables in the house. I'm not a three meal a day person, more of a grazer, but my habits have not changed in over 30 years. The muscles in the palms of my hands and the bottoms of my feet have atrophied to such a degree that I have trouble closing my hands and grasping. The EMG/ NCV that was preformed was only done on the right hand. Took about 15 min total. Also I have little to no pain with the occasional random, shooting exception.
I've never taken Neurontin. As I stated the only medication I take is for the thyroid. Had all my bloodwork done again last month and everything looked good.

As far as the psychiatrist- well if anyone can make a referral- I would really appreciate it. I've been trying to get one for 3 years now, I've been to several different doctors but the problem is that I don't have private insurance and the psychiatrists aren't covered by my Provincial insurance. I also have no financial resources to assist. 2 years ago my doctor sent me to Centre for Addiction and Mental Health and after several evaluations they asked me to join an in-patient program. This was an extremely difficult decision for me to make, but in the end I agreed. I was told I would be called when a space came open and sure enough 6 months later I received a call. Unfortunately I missed that call. I called the number that was left in the message several times only to get voicemail and leave several other messages that were never responded to. Finally last December I actually got a hold of someone and was told that the doctor I had been working with was no longer there.
 
Old 04-20-2011, 03:34 PM #4 (permalink)
notme
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notme
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Default Re: Alone and lost

HI

I'm sorry. I really don't know what to tell you. I just realized you were in Canada. I know next to nothing of their health care system. But--I do know one thing--I couldn't knead bread if my life depended on it. Hell, with my left hand, i can't push a spray bottle of air freshener.

With atrophy, an EMG/NCV should have shown any problems that could be ALS. Sounds like you're having a lot of pain issues, too. Shooting pains sound like something having to do with nerves being trapped in your elbow and/or wrist areas. Have they ruled out carpal and or ulnar neuropathies from nerves being trapped?
 
Old 04-21-2011, 02:58 PM #5 (permalink)
hoopes
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hoopes
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Default Re: Alone and lost

I don't know but maybe you should take a look on the site m e d i c a t i o ns . com and search for Synthroid. All the side effects are listed and there are quite a lot. I sincerely think that your problems may come from here (some post on the site look similar to yours)
Sorry for my english
Hope you feel better soon.
 
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