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Years with no diagnosis, several tests, sever pain HELP!!!(long post)

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Old 09-02-2012, 10:15 PM   #1
Join Date: Sep 2012
Location: Green River, Wyoming
Posts: 1
KimBokor HB User
Exclamation Years with no diagnosis, several tests, sever pain HELP!!!(long post)

My husband is 25 years old this month. In 2008 he began having muscle pain and fatigue and began seeing doctors. DNA tests show nothing, multiple other blood tests show nothing, MRI and CT Scans show "slightly enlarged thymus" (doctors claim that is unrelated and not a problem), muscle biopsy of bicep muscle shows INTERNAL NUCLEI (doctors say it doesn't show a conclusive diagnosis), EMG shows some myopathy (again, doctors claim not severe enough for a conclusive diagnosis).
He has severe muscle pain all the time, no relief. When he exerts himself it does get worse, and he fatigues quickly. MS and myasthenia have essentially been ruled out (I don't trust anything at this point). Finally after two years of seeing a neurologist at the University of Utah hospital in salt lake city (a 3 hour drive for us) they prescribed lyrica to see if it would help with his pain and it did SOME at first, but little now. Everyday his pain is increasing. He has an appointment with a rheumatologist on Sept 28, 2012, but his neurologists don't think it will yield any answers. His physical exams at every appointment (push doc's arm away, pull it, squeeze etc etc) all come back fine. He is strong. He has nearly zero body fat naturally, never works out and is solid muscle but thin at around 5'9" 147lbs.

ANY help regarding a diagnosis would be greatly appreciated. We honestly don't know how much longer he can handle this pain, he is missing work sometimes and struggles daily at work with this pain and fatigue. He cannot play with our son (and I just found out I'm pregnant with child #2), he can only go to work and come home and rest (not his personality, we have been together since 2003 before these problems began). Outwardly, he seems fine. And the only real clue has been the muscle biopsy. His neurologists will probably try to refer him to the Mayo Clinic in Arizona depending on the rheumatologist appointment this month, but we aren't sure when we will be able to go. Along with all of this, I currently have a 4 inch blood clot in my arm, my other was just diagnosed with cancer, and I just found out I'm pregnant so the stress and medical bills are really adding up and we need answers NOW.

I apologize for the length of this post, but there's a lot of info to get out.
And I appreciate any help, referrals, etc at all. Thank you- Kim

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Old 09-18-2012, 02:34 PM   #2
Join Date: Sep 2012
Location: Virginia
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ChefT HB User
Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

Sounds similar to what I've been dealing with for about as long. My neurologist put me on a betablocker (propanolol) and it worked almost immediately. Problem was, my condition has continued to worsen, so we have increased the dosage as far as we can. Now I'm also on anti spasmodics, and after 6 months, those are starting to lose effectiveness too. Anyway, ask his Dr. About trying a could give him some relief in the short term until he gets a diagnosis. It worked great for two years. (I'm 34)

Old 10-05-2012, 04:12 PM   #3
Join Date: Oct 2012
Location: Halifax,West Yorkshire,uk
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hetupsuzi HB User
Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

hi-your husbands presentation reminds me of mine some time ago.about 16 years ago i had a very similar presentation.i went for 3 years without a diagnosis -told it was all in my mind etc-until eventually i saw a sympathetic neurologist.he send a vial of blood for testing (for antibodies for voltage gated potassium).this blood test came back positive and at long last i was diagnosed with issacs disease which is a rare form of muscles used to twitch a lot when i got tired and were very stiff and painfu and the fatigue was unbearable.l.i live in the uk and was fortunate that at the time a world leading specialist lived in this country and i got to see him.issacs disease is rare although it is thought a lot of people may have it but do not get diagnosed as some neurologists have never heard of it.i know that some people have been treated with the lycral and it has helped them a bit.may be worth googling it to see if he can identify with some of the symptoms.there are also posts from sufferers on the NORD board of rare diseases-i wish you both luck and lots of hugs-by the way i recovered 80% in time.

Old 10-15-2012, 09:46 PM   #4
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Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

Hello. I don't understand why don't they check him for fibromyalgia.
Today, by the way, you don't need to have tender points to be diagnosed.

muscles pain all over the body could be a sign of fibromyaliga and it can happen to men too.

Old 01-29-2013, 03:40 PM   #5
Join Date: Jan 2013
Location: Marion, Ohio USA
Posts: 1
Jrun19 HB User
Re: Years with no diagnosis, several tests, sever pain HELP!!!(long post)

I deal with the same symptoms and have not received a definite diagnosis either. I was first told that I had fibromyalgia and they gave me GABA supplements to take and it helped some. Over the next few years I continued to get worse and got into a specialist at OSU and went through ever test possible but everything came up pretty normal. They originally thought maybe I had some sort of autoimmune disease and thought it was stiff person syndrome. This almost always shows up in blood testing but they thought I might be the exception to the rule. They recommended IVIG treatments, which can be very helpful for all kinds of muscle disorders/disease/syndrome. I had a very bad reaction of migraines after three treatments and they had to stop. They felt that I must have something else since I had such a bad reaction so they diagnosed me with Muscle Overuse Syndrome and sent me on my way. They said that it usually gets better over time and to call if I feel worse. Well, that didn't help me much so I continued on my journey.... I should let you know that i have dealt with this for 10 years now and I gradually got worse over the years. I have tried all kinds of things, acupuncture, therapy, massage and medications with little effect I found a pain management doctor and he actually gives me Myobloc (form of Botox) shots. I get 20,000 units, he gives me shots in my upper back, shoulders, back of my neck, both sides of my entire neck and my upper chest area around to my under arms. This has probably helped me more than anything else that I have tried. I get these shots every 12 weeks and go once a month and get some nerve block shots if I have anything, like lower back, that is bothering me. I haven't given up on a diagnosis so I did get into a neurologist that is on the list of best doctors in the U.S. he looked over all my info and all my test results and did an evaluation and we went through everything I'm dealing with. He said its some type of muscle disease and the name really doesn't matter because its not anything that can be cured. He agreed that I have tried just about every option out there and the treatments that I'm doing are probably going to be the most effective. He did say there was one other thing that I could try to see if it helps me feel any better and it's Plasma Exchange. I'm not really sure of the technical name of the treatment. He said its an aggressive treatment but one that I haven't tried yet. They pump blood out of you, separates plasma, cleanses it and pumps blood back into your other arm. He said if it helps great and I can continue treatments. However, he said there really isn't anything else out there for me to try if it doesn't help me. I am going to try it in a couple of weeks and see if it helps me out at all. If not I guess I just keep doing what I'm doing and cope the best I can. I hope this gives you some insight of some kind or maybe a few ideas of things that he can try.
Good luck!

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