I have been going to doctors since October. I've been bounced all over from one doctor/specialist to another. They all keep telling me I'm a mystery to them because my symptoms dont make sense. I could possibly have an autoimmune disorder (sarcoidosis) and I also have a large vitamin D deficency. I was also diagnosed with peripheral neuropathy, with the pain being in my arms more so than my legs. I have burning and tingling and sometimes all over knife-stabbing pain. My legs and arms are heavy. Anyway, my Rheumatologist put me on Neurontin.....how long will this take to start working? I am feeling nothing. I start taking 3 pills tonight at bedtime. I hope this works because I am sick of being in pain. Is anyone else in this boat?
Each of y=us needs a different pain regiment. There is no one size fits all. Neurotin is the first they try, It takes a while to work and can have side effects at first. There are other drugs if that does not work It too. it took me year to finds the right combo. I am at a pain specialist now. Sometimes the meds stop working and i have to try something new. Sometimes pain can only be made tolerable. Neurotin did not work for me because of side effects and another medical condition. Lyrica was great but expensive and I could not drive on iit. I do trileptal and Zanaflex, a muscle relaxant four times a day and a Butrans once a week patch for pain.
Thanks for your input. I'm just so flustered. I dont think my neurologist thinks there is anything wrong with me. I'm not making it up and it's not in my head. I have good and bad days. He would not give me anything so the Rheumatologist did b/c she was getting frustrated with him. I'm young, so that is why they keep telling me I am a medical mystery. And when it's cold, the symptoms are worse. Though they tell me I dont have arthritis and the cold does not affect my symptoms. But it's my body, and I know when I'm in more pain. I really dont have any side effects. Sleepiness sometimes, but not bad and nothing else. I still have some more testing to do and maybe I will get a second opinion from another Neurologist. Thanks again. It's just bad when you have a small toddler and cant hold him for more than 5 minutes b/c the pain is so bad.
You need to take your Neurontin as prescribed by your doctor. Call your doctor to find out how long it is supposed to take to begin working. And if it doesn't work after the prescribed amount of time, go back to your doctor or get another opinion. Neurontin (or any med) may be excellent for someone else with your pain but may not work on you. Our bodies and brains are EXTREMELY different and it isn't wise to take non-MD suggestions.
Have you been checked out for Lyme Disease? I don't know where you are located or if this is a possibility, but it is in every state in the US, Canada, Europe, parts of Asia, and Australia. Many Lyme patients who don't have the expected sore knees and a rash go a long time without a diagnosis as so many doctors are unaware of the many other symptoms it can cause.
My Lyme is neurological and I was checked out for MS, Sarcoidosis, Cancer, and Sjogren's. Many such patients are called a "medical mystery" because most test results don't show much, if anything. (Friends said I needed a Dr. house!) Some are even accused of faking it or told to go see a psychiatrist. This is a horrible feeling when one is truly sick.
Lyme is known to cause significant Vit D and magnesium deficiencies. You might try magnesium supplements to see if they help you feel a bit better. And definitely load up on Vit D. One of your doctors should have already recommended supplements.
You will want a Western Blot test. The screening test seems to miss a lot of neurologic Lyme cases. But even the WB can be false negative. You will want to see the bands in the results to see if you have Lyme specific antibodies that the CDC surveillance criteria doesn't look at.
I never would have thought of Lyme disease. I was also tested for Sjogren's and Cancer. Funny, we are alot alike in our health issues. My sister in law said I should go on mystery diagnosis. Thank all of you for the feedback. Of course I would take all medicine prescribed to me and would never think of doing anything without a doctor approval, I was just looking for more suggestions and someone going through the same situations. Thank you again to Ricobord....you gave me some more things to go back to my doctor with. They want nerve, muscle, and lung biopsies. They have done almost every test I can think of but this is a different angle. I will see what they say. Good luck to you also. Oh, and yes, I take 50,000 units of VD right now per week. Prescribed by my doctor. Then I will take supplements from here on out.
I too take Neurontin, I had Vitamin B1 defiency left my feet and legs with Peripheral Neuropathy symptoms. Feet ache and burn on the tops and bottoms so bad, electrode,tingling stabbing pains. I cant sleep so much pain. I also had a pacemaker put in a month ago, Sick Sinus Syndrome, Swollen Eustachian tubes Inner ear problems, PVCS, PACS,Kidney stones, Fibromyalgia symptoms, SOB all the time, have a hernia that I had CT scan with Barrium Dr told me no Hernia went to another Dr last week 5 mins in the exam you have Hernia I was like WTF I too am sick of bouncing around. Doctor to Doctor. I get the same thing all blood work and test look normal your a medical mystery. My primary says that all the time to me.I'm 29 yrs old someone has to help me out this is know way to live. Doctor tells me you need anxiety meds I'm like you think? who wouldn't be stressed and depressed running from ER, to primary to specialist ect ect. Take care and hang in there Thomas
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