Okay. This is so wierd. It seems like all the nerves on the left side of my body have decided to go beserk. I can feel it all the way down from my head to my toes. My left hand keeps tightening in a tight ball that I have to force open. My toes on my left foot are doing something similar but I can't control the movement on them at all. I can't walk again. And, hurt. Tremors.
This is really weirding me out. I know I'm exhausted and stressed. But this is ridiculous. Is this what neuropathy is like?
Looks like neuropathy, http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm
Although that all-on-the-left deal worries me. At the first HINT of numbness, dizziness or vision problems I hope you high tail it to the nearest ER.
That curling/spasm of your fingers and toes could be tetany. http://www.nlm.nih.gov/medlineplus/ency/article/003194.htm
I had it due to malabsorption (anemia, vitamin and mineral deficiencies) before I was diagnosed with celiac. Freaky feeling. I called it "horror movie hands".
Horror movie hands are right. Toes are doing really weird stuff. Left toes I can't get to move right without extreme effort. Right toes just dance around with no care. However, when I move them, the center three toes on the left foot all move in unison.
I almost went to the ER tonight. But I've reported all those symptoms and no one seems to be getting into any kind of uproar about them. They just want to put me on morphine and oxycotin. I cannot handle the morphine.
I'm going to bed and call the neurologist in the morning. If it gets worse during the night, I promise I call 911. I really hate going to the hospital only to be told to go back home and see the specialist.
Thanks Lynk for the info and the comfort. I feel like I'm living in a most unreal situation. Here I am being told I have no disability and my body is do a complete freak. It's almost like it's saying, "I beg to disagree."
Wish I could make this happen when a doc was around though. But it mostly happens at night. I'll go several days with almost no problems, then wham!
I really can't take this. This is the worst thing yet.
Deanna, it does sound bad. Has your cervical spine been MRI-ed?
Does neuropathy affect vision?
I imagine it is a battle trying to decide whether to go to the ER. But since some of this seems new or worse to you, it could be an emergency. Better to check it out if you're not getting better on your own.
I liked grandmaskittles earlier suggestion that you try to get this videotaped if possible.
I hate that this is so bad at night--that always makes it so much worse.
RKGal, they did do a MRI of the cervical spine, but supposedly it was ok. But the pain specialist that ordered only wanted to know if there was a herniated disc. Since he was sloppy about everything else, I don't trust that he would have followed up on anything. It especially doesn't make since since the xray showed OA in the same area. That shows up on a MRI as well. But someone brushed that off as my age. Still doesn't make sense.
They refuse to do MRIs of my brain or the length of my spine, which this feels painful on the left side of my head and all down my spine. It's like I can feel my whole spinal chord. It felt bruised yesterday and I had my daughter look at it and she said it looked swollen. That would make one think that RA was involved. But heh, according to my blookwork my RA is under control.
I looked it up and yes, neuropathy can affect vision. Although my PCP and Opthalmologist didn't see to know this.
Why do we go to doctors in the first place?
I didn't go to the ER. It is so hard to make myself go because of what will happen to Julie if I go. She still needs so much help right now. She's been really sick and I can't seem to get anyone to help her. We've called 911 on her about 3 times in the last month.
I'm so afraid that they will keep me or I just go through the agony of going and they will just turnaround and send me home anyway to see my specialist. I know I advise others to go all the time. This is one advice I have a hard time with.
The suggestion to get it videotaped is good, but I don't have any way of doing that. Besides, the tremors are not violent enough to show on video. Sometimes I will feel them like crazy and my daughter barely notices. My doctors do seem to believe me that something is going on. They are set on neuropathy and want to fill me up with opiates. They will not consider the possibility of MS because "people don't get RA and MS"" which we know is not true.
Like after everyone of these attacks, my spine hurts horribly, I'm weak and my left hand has trouble functioning.
I have PT today. I simply dread it because of how I'm feeling. I have a long drive to and back.
I've fought so hard to be well. Why can't I win this fight?
I'm so sorry for all that you are going through. I wish I had some good advice for you. I haven't been feeling well myself and can't seem to put two consecutive thoughts together. Just wanted to offer my support, love and hugs.Deanna - after reading Lynk's posting am wondering if you have been tested for celiac disease. I know of 2 people who had anaemia for years & years & had lots of health problems - celiac was the last thing they tested for - both were positive. People with autoimmune diseases have problems absorbing vitamins & minerals.Michelle, you are such sweet person. Don't you ever give up.
Cassandra, I have not been tested and I am really unfamilar with the disease or how you would get tested for it. Any information from anyone would be appreciated. I'm sorry you feeling down. I was wondering where you were.
MS-looking neurological problems must be very hard to diagnose. I had a friend in another state who had severe problems with that, wheel-chair bound and progressing. They called it MS for a long time. Then they said no, it wasn't. They gave it some other name that amounted to 'a thing like MS that isn't MS'. Whatever they call it or don't, she still has a severe, progressive disease, and it's a confidence-buster when they can't even name the thing. How are you supposed to trust them to treat it? That sounds a lot like where you are at the moment.
I had another good friend who developed a tremor, parkinson-like think in his 50's. All they could ever tell him was that it wasn't Parkinson's disease. But it was very much like it, it was progressive, and it killed him.
This whole naming game is a problem. It's necessary, but the game itself is fraught with problems for us as patients, for us getting help in the medical community, and for the medical community feeling like it can step up and manage something and make a difference.
I think my symptoms are more like MS or Parkinson's. But the Neurologist definitely said it's not Parkinson's. I wonder if he is going by my age or my symptoms. I know the PCP thinks its neuropathy, but my symptoms don't really fit that. For instance, I don't no have "sock-like" sensations. And, neuropathy doesn't usually cause tremors that go on for hours.
My spine is definitely affected. I can feel the entire spinal chord. Maybe it is inflammation from RA. I don't know. But it is driving me crazy. I broke out the morphine last night and it really didn't even touch the pain.
I'm ready for an out-of-body experience. Just a few hours, that's all I ask.
Deanne. I am sory that you are having such trouble. I have been dealing with MSlike symptoms since February. My MRI in hospital was clear and I am followed by a neurologist. My GP say that I have MS. "if it talks like a duck and walks like a duck and looks like a duck, then it is a duck" My neurologist is more old school.. Needs a positive MRI. Two things I wanted to say... My rheumy tells me that many many of his patients have both RA and MS and on the MS board it seems as though many people have had multiple MRI's before diagnosis (one had as many as nine).I feel like you and I have some of the same issues. I have more questions than answers unfortuately and I am not doing well with anything at the moment. But I really wish you well and hope that you will continue to let us know about your struggles. All the best to you.Deanna, I just started Michael J. Fox's autobiography, and his Parkinsons sounds a lot like what you're describing. They initially told him there was nothing wrong at all, and he has all the money in the world. I think diagnoses are hard to come by in the neurological world. My uncle has Parkinsons, but he doesn't shake at all. It's not a symptom of all forms of the disease. My cousin has Lyme, and it took 3 years and a lot of neurological damage before they figured it out.Wantingtoknow and Fiona, thanks for adding those pieces of information. It just helps me to know about these things becasue doctors can be so adamant that it can't possibly be this or that. How do they get so narrow-minded? Where is that quest for scientific investigation?
I do think it sounds more like Parkinson's than neuropathy. They absolutely refuse to do any MRIs. I guess it will take going to the ER to get some attention drawn to it. I haven't been going when I should mostly because I didn't want to leave Julie alone. But I think I need to because I need help physically and it adds to my case with SS. But I hate ERs. Every time I go they want to keep me. I can spend hours in the hospital, round the clock, with others. But to be there myself, yuck.