Question: My name is XXXXXXX and I have been seeing Doctors for over 20 years My first symptoms was extremely sore skin and flu like symptoms one night while I was at work around the age of 19 I then suffered from cyatica for at least 2years as well as a burning pain at the base of my rib cage on the LHS this lasted on and off for at least 15yrs and now only plays up now and again and is no where near as painful as it was. I then started developing headaches that involved certain spots in my head however my eyes were very sensitive to light and hurt a lot this was sever for about 2yrs. I then develop aching muscles and have trouble walking when I walk a lot (very stiff) and I get a lot of muscle spasms in any muscle in my body including in my chest and sometimes breathing in will set off a spasm and I have to take very small breaths until the pain & spasm goes away. I get burning spots in my thighs when I am on my feet a lot, I also get very painful skin that hurts even when my clothing touches it at the same time I get flu like symptoms. this can occur at anytime and can last from 1 hour to 2 days however it does respond to panadol - I find it occurs if I have been very active and at times I can even have temps. 4 years ago my tongue also started being affected and if I talk to long or for even any unknown reason my tongue will go to sleep and it is very hard to talk at times my throat also plays up and I am unable to swallow ( I can have food in my throat and no matter how hard I try it just sits there) so now when my throat muscles start getting stiff I only have liquids. 3 weeks ago my what ever it is became very active and my left hand has become very numb when ever I use it and sharp pains all of my muscles are playing up (stiffness & spasms) as well as pains in my head (Usual spots) I also lost my right kidney to a rare inflammatory disease in 2009 as well as my gall bladder in 2005. I have had blood test after blood test since I was 19 with no results or diagnosis the last one showed elevated crn but the XXXXXXX was negative I am also developing contact dermatitis when ever it is very active. I am tired and exhausted and I have 2 doctors but they are at a loss I have been told it is possibly some autoimmune disease but my blood tests apparently are not showing anything I do have a copy of my last test.Could you please let me know of any possible causes or other tests my doctors could try thank you XXXXXXX west

Thank you very much Dr XXXXXXX I will be speaking to my Doctor later this week and I will request to see an Immunologist. Thankfully this latest episode is subsiding and now I am getting back to my usual aches and pains with any activities and occasional muscle spasms but my hand does not seem to be improving and still goes numb when ever I use it. I keep a bandage on my hand which stops the numbness when ever I am not using it. I saw a Rheumatologist when I was 20 who basically told me it was in my head and I do have to admit until 4 years ago I did Doctor hop as I felt as though I wasn't been believed one of my doctors even laughed when I went and saw her about my tongue going numb for long periods at a time and she originally diagnosed me with Fibromylgia and then when I told her that my tongue was going to sleep and I was experiencing trouble swallowing at times she stated that she didn't know why that could be happening because it was not a symptom of fibromylgia. I have asked to see a specialist but my current doctor is not sure who to send me to and is not sure if any specialist will see me as nothing really shows up on my blood works. My biggest concern is that I have experienced new symptoms over the last few years so it is progressing and I strongly believe that the issues with my kidney that was removed is related to to it as well as the inflammatory disease that was in my gall bladder before it was removed and now I am booked in for a D&C and a histology on friday as my uterus is enlarged and they have no idea what is going on with it. I am very concerned that all these issues are related to what is going on in my body and I am very worried about losing my other kidney as I already have 3 cysts on it and multiple small stones (and I have never drunk alcohol in my life) I try to limit the use of medication such as panadol and neurofen however I carry panadol where ever I go as my legs play up while I am walking (it feels as though there is a rubber band around them and it is very hard to take normal steps and I can ache or getting shooting pains through them I also have a spot on my left thigh that burns sometimes when my leg plays up and I also fear what I call getting toxic while I am out which is when my skin hurts and I get flu like symptoms. I also usually have to have painkillers during my house work (most days) as I start to have trouble in my legs either pain or immobility. I have had painkillers atleast every week since atleast 18 for pain and "getting toxic" which has included celabrex, voltarin, neurofen, panadol and now endone & valium (I only use these with chronic spasms especially in my chest or back muscles as these can have an affect with breathing or headaches - my headaches are usually above my eyes or specific spots on my head and they have been the same spots for years - one doctor told me that it was ligaments in my head straining, and valium works on my tongue or throat is playing up, however I have been having 5 mg of valium every night while it has flared up but I think I can start reducing that. I do try other remidies before pain killers including heat packs, resting, heat rubs, and anti inflammatory gels I also watch what I eat and try to limit processed foods and fat foods however I am over weight but I was not over weight when I started with these symptoms. I do try to go to the gym my body shakes while I do weights and I have a hard time on the cardio machines with my legs and arms and pain that occurs with them but I will continue to go to the gym when it is has not flared up. I would love to do my house work or take my dog for a walk without concentrating of breathing through the pain and concentrating on making my legs walk. I know that once there is a diagnosis it can be better controlled and hopefully I won't lose my other kidney or worse. could you recommend anyother test my doctor could do?