neuropathy

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La, the pain in your feet could be lots of things, but it deserves a thorough evaluation. If your doctor blows it off, either insist on more investigation into the cause or find another doctor. We are often hesitant to confront our doctors (even after 35+ years as a nurse, I hesitated, because my expertise was in OB & I assumed-ha!-that they all knew more than I did), or fire them, but this is your health, your pain, your body, your future at stake. Ask your doc what could be possible sources for the pain, how to rule out or confirm each one, what are the possible treatments. Describe the pain in detail, along with other sensations. I have pain, but also numbness. There are different types of pain sensations, as well as an occasional intense itching that drives me up the wall. It's all part of the neuropathy. An EMG may be helpful, but a careful, detailed neurological exam can be just as useful. You should expect the doctor to test for many sensations, using several tools & techniques. If all they do is poke you with a pin, ask to see someone else. I've had 2 neurologists do what I consider thorough exams. Both of them used the pin, cotton fluff, tuning fork, warmth, cold & their own hands to determine where the loss or changes in sensation were. If you are located near a major medical center, check out the faculty. Look for a neurologist with a special interest in peripheral neuropathy. This info is usually on the med center's website. You might not need to do this if you find a doc with the skills & willingness to really investigate this, but both of the docs I described were associated with medical centers. One was a NS specialist, the other an neurologist with no particular expertise in sarc, but in neuropathy.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: ladyt19119@...Date: Fri, 3 Dec 2010 22:07:20 -0800Subject: Re: Re: Another Health/Disease Related Question

Thank you. I will mention this to the doctor. I am so glad you all understand.

To: Neurosarcoidosis Sent: Fri, December 3, 2010 7:47:42 PMSubject: Re: Re: Another Health/Disease Related Question

Latanya,Many of us have pain in our feet, as well as burning in other parts of the body. I have neuralgia pretty bad all over, but sometimes it gets so bad in my feet that I have to put three pairs of socks on just to walk around in my slippers.Medication is different for everyone, but I think many of us take Neurontin or Lyrica for these problems.

To: Neurosarcoidosis Sent: Thu, December 2, 2010 6:36:40 PMSubject: Re: Re: Another Health/Disease Related Question

I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up.

How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly?

The bottom of my feet have been hurting. What is that about?

To: Neurosarcoidosis Sent: Thu, December 2, 2010 11:32:11 AMSubject: Re: Re: Another Health/Disease Related Question

I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure!

Vivien

Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here.