WANT TO SCREAM
Posted 13 January 2010 - 04:43 AM
Posted 13 January 2010 - 06:51 AM
Posted 13 January 2010 - 07:31 AM
It's only natural to be disappointed when you don't get an answer to a problem. I'll be surprised if there are any of us who haven't felt that way at sometime.
I'm not a doctor, but sending you for a neurological consult does make sense. They'd want to rule out things like peripheral neuropathy which could cause not only the burning/tingling, but depending on the kind could also cause some muscle weakness. I'm not sure of the actual mechanism of action, but I think if the nerve signals to the muscles aren't strong enough or aren't getting through, the muscles that are served by the affected nerves won't know you are asking them to do something. Or something like that, anyhow.
I hope you get to the bottom of this soon, I know how frustrating it can be.
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Posted 13 January 2010 - 09:37 AM
It seems to be that there's not much worse than having a symptom, particularly one that is debilitating, and have no diagnosis to pin it on. Having said that having the wrong diagnosis would be worse because you'd never get the right treatment for the condition. Seeing a neurologist is a good thing as is the fact that your doctor is prepared to have the matter investigated rather than dismissing it or pinning it on the usual suspect...scleroderma.
Take care and keep us posted.
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Posted 13 January 2010 - 02:02 PM
Posted 13 January 2010 - 03:08 PM
Posted 14 January 2010 - 05:53 PM
muscle weakness, especially in the upper arms. To peg the washing out
can become very painful. All of my tests also came up clear. I possibly
also have peripheral Neuropathy, this will be investigated soon.
Maybe there is a link with all of this
Posted 15 January 2010 - 07:47 AM
Most of my days I spend just drugged on pain killers (pain medication at night, pain medication during the day)
A few times I felt that I was feeling better and opted not to take my nighttime medication, needless to say I couldn't move the next day at all.
My doctor put me on Cellcept to see if that would help, but it doesn't look like it.
He is thinking a viral infection could have triggered a fybromialga type of effect because it came about after I was ill for a month with a flu/cold.
Posted 15 January 2010 - 04:56 PM
The symptoms you speak of, the weakness and the "burn" in your muscles are exactly what I had been experiencing. Even after I was diagnosed with progressive systemic sclerosis my dr. did not think that the diagnosis of pps was responsible for the muscle issues. He sent me for some lab work to be tested for mitochondrial disorder and sure enough, I was positive. Only after treatment for this did I start getting better. Mitochondrial myopathy has a large spectrum of symptoms, similar to scleroderma, but it hits hardest in the muscles. Your symptoms sound classic mitochondrial myopathy. I would ask my doctor. if I were you. The blood test is pretty simple. Its a forearm ischemic test. They draw blood at the beginning of the test to get a baseline. then you squeeze a rubber ball for a minute of so then they redraw blood and this goes on for a while and what they do is check for spikes is lactic acid and ammonia and other metabolic waste. Mine was sky high. I hope you feel better. Please keep us posted. Joe
Posted 16 January 2010 - 10:58 AM
Posted 21 January 2010 - 07:20 AM
Mainly, though, I just feel your frustration. I've learned to cope with other symptoms, but not being able to pick something up off a shelf or hold my arms out for more than a few seconds, not to mention the constant pain, has been the most frustrating thing I've dealt with. Everytime I really feel the effects, I either get angry or want to cry or both. I'm only 22, and I worry about it getting worse and not being able to carry on a normal life. I'm terrified that when my husband and I choose to have children that I may not be able to carry them around and keep up with the demands. I'm tired of hurting ALL the time. It came out of nowhere and hasn't gone away. I'm hoping that when it gets warmer it will subside some.
I'm normally an extremely positive/optomistic person, but this development has really got me down. I have a follow-up appointment with my rheumatologist in a few weeks, so hopefully I'll get some answers and fixes soon.
Posted 21 January 2010 - 01:39 PM
Anytime this is going on, I have increased inflammation indicators. You may want to get this tested. See how the tests come out during an episode and when you are feeling better. The tests are Erythrocyte Sedimentation Rate ("ESR" or "Sed Rate") and CRP ("C" reactive protein). This may provide evidence of an inflammatory process)
Posted 23 January 2010 - 10:32 AM
...and this is the great support I continue to speak of in so many of my posts.
We are as different as snow flakes, in that none of our symptoms are going to be exactly the same. Yet, some of us have commonalities, as far as our experiences of our various illnesses are concerned, which makes this such a wonderful place to express what we are experiencing.
When I was diagnosed in August of 1995, I had no computer/internet, so I was completely overwhelmed by all of the information I was given, by the gastrointerologist. I had been experiencing symptoms of Raynauds, Fibromyalgia (muscle/joint pain, Gerd, Psoriasis/PsA)...some since 1983, but the GERD since 1991.
A battery of tests were run, which was good, yet quite frustrating for me at the time.
I also have great empathy for you and what you are experiencing, as do so many others, as we've seen, in response to your post. I can say that these symptoms may well ebb and wane, which is good.
The more empowered we become with knowledge, the better our ability to communicate with our doctors, thereby becoming our own best advocates where our healthcare is concerned.
Please keep us in the loop, as to how you are doing?