I'm curious to know if you have received an accurate diagnosis in the last 3 years since that post. If you get this please let me know. I completely understand what you're saying about feeling like a mental case and having drs who are now tired of listening and are at a loss. I have been dealing with some time of Auto-immune disorder for almost 2 years now. From the research I have done I have narrowed my symptoms down to some type of CNC auto-immune disorder but all of my symptoms are the same symptoms for several different disorders. I have been MISDIAGNOSED with Fibromyalgia, Rheumatoid Arthritis, Lupus, Raynaud's Phenomenon, and now back to Fibromyalgia because they can't find anything through lab testing to back up the previous diagnosis. I'm now being sent for MRI's to check for MS. MS, describes my symptoms more than anything else. Although tonight, when reading PD page most of my symptoms are also listed there and that's something we hadn't even researched.
My symptoms include: (but not limited to because there are other things that I haven't tied into it that could be related)
tremors almost nonstop, twitching in the muscles & nerves throughout my whole body including torso & face, Severe back neck & hip pain. Severe pain in my hands wrists legs & feet. My fingertips & toes turn ice cold & blue (most of the time under stress or for no reason at all) once I get cold I have a hard time warming up and vice versa when I get hot. I suffer from swelling throughout my body including my face & stomach but mostly in my hands legs and feet. When I bend my neck down I have shooting pains that go down my back like lightening. I suffer from orthostatic hypertension. (my blood pressure is typically high when untreated and higher when sitting up, when I stand my blood pressure drops suddenly & causes it to be difficult to treat my blood pressure. Because when my blood pressure is normal at sitting/rest position when I stand it's drops too low. When it's high at rest it drops to normal when standing. Catch 22) I suffer from memory problems, dizzy spells, vision problems (blurred & double vision that comes on randomly and leaves just as random), I have also been diagnosed as "BIPOLAR" due to the constant highs & lows in my mood swings day in and day out. The majority of that is from frustrations of my new found limitations! I have weakness in my muscles. I can't lift my babies very easily, at times can't lift my glass or fork very easily. It is very difficult to stand because my legs feel wobbly & shaky & very unstable. I feel as though they could give out from underneath me at any given time. I had reached an all time high last year in my weight at 348lbs, this is when my symptoms progressed to constant every single day and very severe. I thought losing weight would help these problems especially the wobbly legs... but if anything it has only gotten worse even after losing 70lbs so far. I have constant joint pain in my fingers because I spend a great deal of my time on the computer, as I'm in school & run an online swap shop. My wrists hurt almost always. Was told this was carpal tunnel syndrome many years ago recently told it wasn't carpal syndrome and a few months ago was told again that it is.. Did I mention that my memory SUCKS! oh and I have trouble computing and processing information. This part of what ever I suffer from came on after I had a fainting spell and ended up crashing head first into a wall when I leaned forward from the toilet to reach the toilet paper I had dropped when my hand gave out when grabbing it. This too is a symptom that seems to be getting worse, My grasping. I have a hard time grasping things lately. It's very difficult and I drop a lot of the things I am trying to pick up, either because my arms/hands get shaking too bad or I get a spasm which causes me to drop them. Last week I had an episode where I was typing and suddenly I couldn't lift the fingers on my right hand to reach to type the letters above the home row keys. Upon this happening I had a severe spasm in the top of my hand and when trying to see what was limiting my range of motion I discovered that I couldn't cross any of my fingers over another. It was absolutely impossible. This lasted for a couple hours, then subsided. It is very uncomfortable to sit still it is very difficult to move it. My ankles hurt constantly. I have tingling, numbness, & loss of sensations in all parts of my body. I have had random onset episodes where I couldn't tell the difference between rough, smooth, hot or cold. Often I feel like I'm wearing rubber gloves. I have severe pain when I stand especially after sitting, sitting, walking or riding in the vehicle for more than 20 minutes. Sometimes it feels like I'm dragging my legs behind me. When I wake up, I have to lay in bed for 15-20 minutes before I can even consider getting out of bed because if I don't I will hit the floor. It's almost as if I have no feet at all when I first wake up. They are numb cold & almost unusable. When I do stand up, I am very off balance, wobbly, my legs tremble & I have to stand for a minute or 2 before I am even able to move my feet to walk. It's almost like I have to consciously think and tell my feet to walk as if I had forgotten how. I run random low grade fevers for no reason. I have headaches sometimes severe & days at a time. I have twitching in my eyes & lips that are random and last just a few seconds at a time sometimes it happens on my cheeks also. On a really bad day I feel as if someone is hammering icepicks into my bones! My skin often feels like it's on fire from the inside. The lightening pains are some of the worst feelings. I get very dizzy in the shower. My hearing has also suffered. For some reason I don't hear as well as I used to. I often don't wake up with my 2 toddlers cry at night my husband has to get up with them. (thanking GOD that he's currently unemployed to some degree anyways!) This all started after I had my 2nd daughter, but was random. 2 months after my 2nd daughter was born I was pregnant again. I had several problems during my pregnancy that I attributed to the pregnancy but didn't subside once my 3rd daughter was born. About 2 weeks after she was born I started noticing some very strange things happening and suddenly I had no ability to stay awake. I would randomly drop off to sleep at any given point and I always seemed to be exhausted. (I attributed this at the time to being a new mother in post partum, again it didn't subside and she's now almost 2) I had problems with my epidurals during labor & delivery of both of the babies, in which I believe they messed up nerves in my back causing severe nerve damage that I am now experiencing. Which is sometimes the case found with MS, according to what I've read. I often get sick to my stomach, have difficulty swallowing, have chronic constipation, difficulty starting to pee and often feel like I didn't drain my bladder completely and more often than not all I do is trickle when I do pee. I am very forgetful all it takes is a split second distraction and I can't remember what I was doing only seconds before. Carrying on a conversation is difficult because I often lose my point in my sentence. I know there's things I'm leaving out but I can't remember them at this given time and this is plenty long enough as it is. Long story longer, my dr is tired of hearing me complain. He offers no answers or suggestions anymore, doesn't seem concerned when I find things alarming (such as when I couldn't lift my fingers suddenly) and I feel as though I'm now talking to a wall because all he seems to want to do is write me a prescription for pain medications, antidepressants, muscle relaxers, diuretics, B-12 injections & sleeping aids. I am not a pill popper & I refuse to take all these medications when he can't even tell me what is wrong with me. I am not going to mask the symptoms not even knowing why I have them in the first place. OH I forgot to mention my B12 is low and so is my Vitamin D. I forgot what my point in writing this extremely long message was but I guess I hope someone reads this and says OMG I KNOW WHAT SHE HAS! and not say OMG SHES CRAZY! She is such a hypochondriac. Which is what most of my family & my dr seems to think. OR at least that's the way everyone treats me. If anyone has anything to share please feel free to leave a message here and I'll check back or Please feel free to email me. Thanks to anyone who read this far and I am praying to find some suggestions or answers! I'm tired of living this life most days and if it wasn't for a wonderful patient husband & my 3 beautiful children. I'D SO CHECK OUT!
I was ever so glad to see your post, because I was wondering what in the world is wrong with me, and am I the only one with all of this stuff going on.
I was diagnosed with Fibro about 6 years ago, and have been just surviving ever since. And it seems that every time I turn around something new gets added to the mix of symptoms. I have been diagnosed with the begining stages of Parkinson's, and was given the so called best med for it, I can't recall the name right now...lots of forgetting... It cause severe muscle spasms body-wide, so I had to come off of it, and was given flexerill for that. I have a rare skin disease that came on after that, called PLEVA or Mucha Haberman disease. I also have other conditions going on, but I was glad to read your post because I have exactly the same symptoms as you, and am at a loss for what is going on here. I also live in a small town in Arkansas, it would be interesting to see which town you are from.