[Ja515y]

I apologize for the length, but I feel every detail is important.
Hi, I'm Jason. Reason I'm posting is to see if anyone can give me ideas on what could be my underlying causes are for my symptoms and idiopathic diagnosis. I'm 33. Never suffered any trauma. 1 surgery to have my tonsils removed when I was a child. I'm skinny. I'm adopted (closed) so I don't have any family medical history records. I'm pretty sure, because of nature of my symptoms, that there has to be something deeper going on. I'm not normal. I've come to terms with that already, and just want to figure out what exactly is wrong.
My Symptoms:
\Trouble swallowing since I was a child.
\Trouble waking up in the morning, which turned into severe daytime sleepyness. I had a sleep study in 2010 and was diagnosed with PLMD (periodic limb movement disorder). I'm currently on clonazepam and Ropineral which have drastically reduced the problem. I do experience muscle tremers during the day on occasion.
\Gastrointestinal problems. In 2002 I started feeling a dull pain in my abdomen below my ribcage. My ability to eat had reduced slowly from my mid 20's. At times differents parts of my GI system have cramped or bloated and caused pain. Idiopathic Gastroparesis was diagnosed in 2011. I'm almost never hungry in the morning. It's day to day, but generally I can only eat smaller portions of food before feeling full. I was prescribed Reglan, but it didn't help. One aspect that seems to be baffling is that it's worse in the summer, specifically when it's very hot and humid. Doctors haven't heard of that, nor have I seen it complained about with other GP sufferers. I don't vomet, but when it flairs it can be very painfull, and I can go day's without eating. Somehow I've maintained a weight fluctuating between 165 and 180 lb's. since I was 17. I'm 6'4".
\Lower back Pain. In my late teens, after a long sleep I would experience lower back pain, but this went away shortly after waking up. Mild most of the time, but a little more painfull later on. One morning in 2008 I woke up with the same pain pretty severely. This time it just didn't go away. It's a deep sharp pain that starts from about 2 inches up from my tailbone. I also feel it in my butt, and a little down my legs. to Saw 2 chiroproctors a few times. No results. Got an X-ray. No results. 3 months of physical therapy. no results. Got an MRI and saw a back specialist. Only thing found was a small amount of arthritis, but nothing that should cause that much pain. Amazingly, after taking medicine prescribed for my PLMD, my back felt better. It's not 100%. Still hurts, but not nearly as bad anymore as long as I'm on Ropineral and Clonazepam.
\Eczema. In my early 20's I started getting very itchy and would get rashes when I was hot. In 2006 I noticed that wounds from minor scratches in certain areas would not heal right. Saw a specialist and was diagnosed with eczema. Dryness is much worse in the winter. soaking in a bath helps.
\Asthma. When I was 15 I began having breathing problems sometimes at night. I was diagnosed with asthma and prescribed a rescue inhaler. Over the years I smoked cigarettes which made it worse and I needed a preventative inhaler. I quit smoking in 2009 which made it much better. I still use a rescue inhaler a few times a week.
\ADD. As a child I was all A's and B's until about 4th grade. I was never considered a special needs child, but at the same time I struggled to maintain mediocre grades. I had trouble concentrating in class. Reading became a big problem. It's not as if I don't know how to read, but when I would try to read a book I would have to read the same line over and over again to understand it. When I was 17 I was diagnosed with ADD and Depression. Prescribed Welbutrin which had no effect. Then Ridlin, and I didn't like the side effects so it's gone untreated. Memory and concentration is difficult.
\Bladder issues. These have been very sporatic, but I'm sure worth mentioning. Once and a while I will have the sensation of really having to pee, but then hardly any comes out. Sometimes I'll be back and forth a few times. Protien was found in a urine test, but a 2nd one was done with no protien found. Once and a very great while I will see a semen like substance come out with or instead of urine.On a handfull of occasions urinating was painfull and took a very long time. I think each time I had drank alcohol. I drink on occasion and It doesn't usually happen. I didn't pass a stone or anything.
Hope this was interesting enough to get through. I do have 1 idea that really would explain a lot, but I'm in no way a Dr. and it's just a guess. I'm going to ask my Dr. if I can get tested for Myotonic Dystrophy. If anyone has any other suggestions or ideas I would love to hear them. Thank You.

[Magirose]

hi, I'm nor sure I can make any definite suggestions but am interested in reading your story because I have a lot of your symptoms and I have an auto-immune disorder diagnosed some 8 years ago following years of symptoms which occurred in childhood disappeared for a few years and then recurred when I hit early 20's.

The things I recognise are the back pain you describe. It's exactly the same as the lower back pain I have with pain down my legs too....more so left leg. I've had problems with my throat and that has sometimes led to difficulty swallowing. Eczema and other skin irritations and rashes. But you mention about the heat making you worse. Hot weather makes me feel absolutely dreadful. It triggers Behcet's flares and does for other people I know who have the same disease.

Bladder problems...weakness and gastroporesis I also get. Asthma type symptoms I also get though I don't test positive for asthma and asthma inhalers don't help (ventolin does to a certain extent but not the steroid inhalers).

Memory and concentration issues I also have. Big time.

When I hear these stories from people with similar unexplained symptoms I believe they have a similar disorder to me. I mentioned I have Behcet's which is a specific immune system disorder but there are others with similar symptoms. Many of them. I strongly suggest seeing an immunologist if you can and having a chat with them. It's such a minefield really....even my current specialist when he gave me treatment recently said 'oh well at least we know we can rule out lupus....if it had been that the treatment would have made you worse'. Because there are so many auto-immune disorders and because they are so sort of similar, they sometimes struggle to diagnose properly. There is no blood test for Behcet's and some other auto-immune disorders can be present without your blood work showing anything remarkable.

I so strongly advise you to go down the road of speaking to an immunologist. I struggled for such a long time to be diagnosed and I know exactly what you mean. You know there is something wrong and you struggle to get a diagnosis. Very disheartening.

[Ja515y]

Thanks Magirose. Sorry to hear about your afflictions. Especially if you have the same problems I do on top of what you described. And that's exactly what I'm worried about. If I have this many issues at 33, what's it going to be like when I'm 43, 53, when your body is already starting to break down from natural aging processes.

I will definately ask my doctor to send me to an immunologist. After reading up a little on what you posted it seems like a good route to go. I hope it's a "good summer" for you. Good luck and thanks for the advice.