Old 01-11-2010, 11:58 AM #1 (permalink)
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Default New symptom

Hello, all--

Back again. I went back to the neuro's office in mid-Dec. not too much new to report, except for a change in my knee reflexes, which are now uneven from one side to the other. I saw a physician's assistant in the neurology office who said he feels it is too soon to repeat the EMG and the MRIs of the brain and cervical spine, but would recommend they be repeated this spring or summer if things do not improve or worsen. I will see the neuro there again in June. I had a normal EMG of two legs and arm in June and a brain MRI in May which showed some scattered "lesions" in the white matter which the neuro, who specializes in both ALS and MS, did not think were consistent with the latter. at the time, he said he did not think I had ALS either, but said he could not completely rule out a neuro condition that has not yet fully manifested itself. a second opinion from another neuro concurred.

anyway, my greatest complaints today are the increasingly bothersome saliva and also fatigue, stiffness, and random off and on pain. my neck is now chronically stiff on one side and also has episodes of sudden tightening. is that a cramp or a spasm? It also feels like I have a tiny bit of a tremor in my head. I can feel this very slight movement in my head when I am just sitting still-- is this due to neck weakness developing or is it a symptom on its own which may point to some other illness? Has anyone experienced this? I have pain in other parts of my body, but it just comes and goes.

I am also experiencing sudden and profound fatigue, particularly late in the afternoon. Almost like I am going to faint or collapse, even, but that never happens. It just hits me out of nowhere and if I am out, I have to get home as soon as possible. I seem to feel better when I minimize my activity, but that is not an option for me--- I have a soon-to-be three year old to entertain and a household to run and I work part-time from home.

Recently, I have also noticed that I am waking up with a loud snort while lying on my back. This is completely new for me. This has been happening nightly for about a week-- have not seen the doctor about this particular issue. of course I googled this symptom and it sounds like sleep apnea, which I am not sure is related to all this other stuff. when I last saw someone in my GP's office (a nurse practitioner), she said "I don't think there is really anything more that we can do for you here," and said until the neuro's office or rheumatology comes up with something, there is nothing further they can do. which does not inspire a great deal of confidence in me, or give me any options, really. They want me to see the rheumy again, although that seemed a dead-end before.

I went swimming yesterday for the first time since this summer, in a heated pool, and it was nice, but I had some pain in my right arm and shoulder (which is the weaker of the two) and pain and stiffness in my ankle, which also seems to have developed the tendonitis that I have in my wrist, elbow, and arm (the rheumatologist that I saw said he thinks I have tendonitis in my arm, from what, I am not sure. ) The sole of my right foot was cramping up a bit while swimming. The right foot seems to have lost some of its padding, in the same way that my right hand has.


anyway, just wondering what you think I should do at this point. just sit and wait for the next neurology visit, or push for further investigations elsewhere?

I have been getting massages every other week to help with the stiffness, but it's expensive and I am not sure I can continue. It helps for a little while, but its effects are fleeting. would chiropractic help?

just looking for any input.

thanks--

Sandra
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Old 01-11-2010, 05:34 PM #2 (permalink)
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Default Re: New symptom

Hey there,

I went/go to a chiro and I love it. AND the best part is that I get accupressure massage for 40 mins before my adjustment and my insurance covers chiro care, so I only have a co pay of 15! See, if your insurance will cover chiro then get your massage there. I Feel that they are better at it anyway. I have my c1 off axis, bulging disc at c5 and 6, mild scolosis (new for me) and hip misalignment. My chiro has worked hard on these issues. We both feel that these are not what is causing my muscle problems but helps for relief and makes me feel like I am doing something. He says I am a 'complicated' case! Your telling me!
So, you tried the swimming like we talked about. Well, I went today as well and guess what? Got a mild cramp feeling in the sole of foot. My wrists and forearms hurt when doing it and my shoulder as well. I feel that swimming is getting harder and I have been doing it since the summer 3-4x a week. That makes me nervous. Both my thumbs hurt as well, so I made fists while doing backstroke. But, after it made my body feel sooo much better. There is NO pain after for me.
I would not push for another neuro appt, no point if you just went. I have been down that road. I am now going back to my als doc after staying away for one year from my clean emg and clinical in Feb of 09. I went every 3 months and had the WORKS done, including biopsy and they were right,nothing showed, give it time. I also went to the top rheumy in my area, dead end as well. Yes, I had some mild this and that show up but nothing he would diagnosed with. IMO, I would swim gently and see your chiro and wait it out for month 3. It stinks, I know.
Good luck. my opinion is of coursed skewed because of my experience and yours maybe something different, so do what your gut tells you. My gut said take a year off, and I do feel that my appt in feb will be telling as things are progressing for me and not improving.

Blessings,

april
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