As it continues my numbness still exists, this left sided weakness and weird electrial pulses down my legs and in my back. I have EXTREME spinal pain. If anyone else has it too please- what can I do. I have tried ice, heat, meditation, relaxation, massage, and medication.....I am getting NO relief. I still am blurry in my left eye.
I went to a Neurologist.....and damned if she went there....she thought to believe my symptoms where those of depression. Hell anyone with a chronic illness at one point or another would be depressed, well I am to a point of understanding and deal with all problems head first...I regularly seek couceling so I dont believe a word this so call looney toon doctor has to say. Needless to say Im going on Neuro number 4..a 4th opionion. I am determined to get an answer, and if she expects me to pay my bill for her lack of service.....my goodness. I went to a Rheumatologist for the first time and got my offical diagnosis of RA with a twist of 'undetermined autoimmune disease' due to the numbness issue. I had a full spinal xray and more bloodwork which I will find out all the results in a few weeks....I am soo hoping to find something. Id rather I not find anything but that would lead me to think I was just crazy. HA. I am doing any and every test possible, next step Im going to request a spinal tap just to see what comes out of it.
I am trying some pain management and really any suggestion to keep things under control would be nice. I appreciate all the help and answers. You guys take care!!!
Oh and to make matters worse Im back on Plaquenil after it was determined it caused angioedema. Second try....so far Im just tired.
hi shannon, i'm melanie. bless your heart, you do sound like a train wreck! i wanted to put my 2 cents worth in and give you some suggestions. please take you meds, don't just quit taking them. it will only make your doctor mad. tell him/her the problem and let them change it. did the neurologist not refer you to a neurosurgeon? if not, why? also, what is the angioedema affecting, how did they find it? have you had only one MRI? i don't think i'm completely understanding your weakness, is it there all the time or just with headaches? are you taking neurontin or lyrica? you should be, it helps a great deal with pain like you have. that's something to ask for if you don't take it. if you don't have insurance, i know all this is tough. but here's something else to ask for. my doctor orders a compounded cream that has to be made at the pharmacy and it has ketoprofen in it. ketoprofen is an anti-inflammatory like motrin. the pharmacist can make you a cream with ketoprofen and/or any combination of flexeril(muscle relaxer), dexamethasone (steroid), xylocaine (deadening agent), ativan (sedative), and other meds. i had a fusion of 3 vertebrae in my cerv spine 2 yrs ago and i still have some pain and i hate narcotic pain pills. that cream and been a God-send. i swear i couldn't survive without it. i get just the ketoprofen in mine. i'm an RN and i've seen people get that stuff after having shingles, they have burning/crawling/electrical like pain around where the blisters were and they swear it relieves the pain tremendously. you have to find a coumpounding pharmacy to do this. call and tell them your symptoms and the pharmacist can give you an idea what to ask your doctor for - well, if they are nice they will. that cream works so well for me that i can't believe people aren't busting down the doors to pharmacys wanting it. i'm really lucky, my insurance pays for it. i get it in a 4 Oz container and i've asked how much it would cost out of pocket and they told me $120. i've had it filled twice in 2 yrs. each container lasts for an entire year and i put it on my neck and my lower back almost daily. a little goes a long way. also, please get a referral to a neurosurgeon. you need them to eval that tumor and see if it needs to come out. it's a day surgery i think. they go in through the nose to take it out. no scars! well, none that you can see!! don't give up and don't feel alone, each and every one of use have our own set of problems and it's scary. send me an e-mail any time. hope i can help. melanie meiel@aol.com
I have been to several neurologists. The first one did nothing, said I had migraines, wrote me out with pain meds and sent me away. The second found nothing conclusive to why I was having symptoms. He did mention to me at my last consult that I was borderline for some spinal something or other, and the bastard didnt put it in his notes so I have no idea what it was. He did sugest I get a spinal tap. This last neuro I went to like I mentioned thought it was just depression, she didnt order any tests. Got NOTHING!!! I am going to try again with another and Im not leaving that office untill they give me an answer or send me somewhere where Id get one. As far as my new Rheumy doc....she wasnt much help either. She did request a spinal xray and blood tests all of which I havent heard the results. she says I have RA and the mysterious autoimmune thing but isnt doing anything to figure it out. She points to a Neuro and the Neuro points to the Rheumy....Where else could I get an answer???? And to top it I do need meds that work but it would be right to figure out whats really going on before just medicating me. THe numbness thing comes and goes....it starts slow or all of a sudden, its always the same side, it was worse this time so thats why I went to the hospital. Sometiimes there are headaches sometimes not. I dont think headaches are dirrectly realated. and this last for several weeks before just hiding away for a next time.
thanks for your support. Appreciate it much.
shannon, that all sounds way scary to me. you need to pin these doctors down and tell them to explain exactly what they found out and make sure the neurologists have all sent their test results to your rheumatologist. the rheumatologist should be taking lead responsibility for your care. flat out ask if he/she is taking responsibility! be blunt! but over all, don't give up. find another if you have to, but i hope you have more doctors to choose from than we have in amarillo. there are now 4 rheumatologists and i think about 6-7 neurologists and that's it. if i have a brainstorm and think of some really enlightening ideas for you, i'll write again soon. good luck to you and keep me updated.
Hi I just stumbled on this site after doing a search on neurontin, actually. Read your post and feel your pain because I too am getting the run around, except I haven't even got a diagnosis yet(have no health insurance, been doing this dance for 5 months). I am in severe pain, the blood tests show no signs of RA all tests are normal, but have horrible bone pain muscle pain and numbness-and also, crooked swollen fingers. Will take months to see a Rheumatologist, I was told, so the doctor put me on neurontin, and said see you in one month
. The dose is only 300mg, it didn't do diddly, so I took it upon myself to up the dose...what a nightmare....All I can say, even though your situation sounds like hell, be VERY thankful you have some OPTIONS, I have NONE. I can't choose another Dr. or be referred to a specialist, of any kind, I am completely at their mercy. It could be worse, so hang in there ok
*I should also add this has actually been going on for a lot longer than 5 months. More like 7 years. I too was told it was all in my head, the extreme fatigue and muscle pain, so I just gave up and learned to live with it the best I could. It wasn't until 5 months ago, that I developed the unbearable pain, and couldn't do simple things such as the dishes, or even walking comfortably...I don't know what you went through to get where you are today- But ohhh do I feel what you are saying so sorry