Remudamom Posted February 19, 2009 Share Posted February 19, 2009 Dh has been sick. So sick that we packed up and went down south where my family is so that my doctor dad and brother could help us out. We managed to rule out neurological problems (whatever that means) but haven't diagnosed anything yet. Symptoms- horrible rash muscle weakness numbness and tingling loss of appetite so a severe weight loss really bad sinusitis It's the muscle thing that's the worst. The nurses drawing blood asked him to make a fist, and just doing that made his arms ache badly. He played guitar with the kids and that night his arms really hurt. His left leg is painful after he drives the truck and has to use the clutch. Any ideas? We are awaiting the results of a Lymes test. Quote Link to comment Share on other sites More sharing options...
elegantlion Posted February 19, 2009 Share Posted February 19, 2009 Shingles? Just a shot in the dark, but my dad had that and had rash and muscle weakness. Quote Link to comment Share on other sites More sharing options...
LaxMom Posted February 19, 2009 Share Posted February 19, 2009 Shingles is obvious. No doctor (let alone two) would have to run lab tests for that... they'd spot it walking through the door. This sounds very familiar... lupus? Long-term lyme disease? Something very recent that I was talking to someone about. Definitely an auto-immmune response. What does the rash look like? Quote Link to comment Share on other sites More sharing options...
Alice Posted February 19, 2009 Share Posted February 19, 2009 Dermatomyositis? http://www.ninds.nih.gov/disorders/dermatomyositis/dermatomyositis.htm Quote Link to comment Share on other sites More sharing options...
Colleen Posted February 19, 2009 Share Posted February 19, 2009 Shingles was the first thing that popped into my mind when I read your post. Second thought was Lupus, but that may be because I have a couple of friends who developed Lupus. Sorry he's dealing with this. Let us know what you find out, 'k? Quote Link to comment Share on other sites More sharing options...
Remudamom Posted February 19, 2009 Author Share Posted February 19, 2009 (edited) Shingles (my first thought too) and Lupus have been ruled out. As bad as Lymes is at least we would know how to treat it. He's seeing a rheumatologist tomorrow. Edited February 19, 2009 by Remudamom Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 19, 2009 Share Posted February 19, 2009 MRSA staph in his sinuses? These are symptoms of a MRSA staph infection. They would need to take a culture. Usually staph infections are on the skin, so look for signs of that. But my mom only had it in her sinuses. It can have all of those symptoms. If you are near Atlanta their is a great Natural Doctor their who will do a full Electrodermal body scan and know what it is without any additional tests or guessing, and has an excellent track record for treating seroius modalities. Quote Link to comment Share on other sites More sharing options...
Colleen Posted February 19, 2009 Share Posted February 19, 2009 Shingles and Lupus have been ruled out. Interesting. Curiouser and curiouser.... ETA: Just read Lovedtodeath's reply. It may very well be a staph infection. I'm really wondering now! Quote Link to comment Share on other sites More sharing options...
Mom0012 Posted February 19, 2009 Share Posted February 19, 2009 Be very careful about relying on the lyme test. I have long term lyme and the initial tests that were done at Labcorp all came back negative. I then had testing through IgeneX and my test still came back negative, but with some significant bands being positive. Because of my symptoms, and the fact that I was incredibly lucky to have a doctor that realized how prevalent chronic lyme was becoming, we decided to treat and see how I responded. Most of my symptoms completely resolved within a couple of weeks and the remaining ones improved by 90%. My worse symptoms were joint and muscle pain which had gotten to the point where I spent most of the day in a chair because I could hardly walk. I had also been suffering from anxiety, trouble sleeping, and memory problems for years, which I did not associate with the lyme, until they all resolved with treatment. Treatment is antiobiotics, by the way. After being treated for a while, my lyme test came back positive. From what I understand, it "hides" in the immune system when the disease is strong, so that is why my test was initially negative. After it had been weakened, it showed up on the test. Obviously, I don't know if your son has lyme or not, but I just want you to know that the lyme tests are supportive for a diagnosis, but a diagnosis should be made based on symptoms and maybe response to treatment. If the test comes back negative and you rule everything else out, please revisit it and find a lyme-literate doctor. Lisa Quote Link to comment Share on other sites More sharing options...
LaxMom Posted February 19, 2009 Share Posted February 19, 2009 I want to say that it sounds a lot like Lyme's that a friend's MIL was diagnosed with last year - body aches, excruciating fatigue, visual disturbances, dotty rash... Please keep us updated. I hope it's something easily treatable. Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 19, 2009 Share Posted February 19, 2009 Lisa is right too! There is information about labs that find things that typical labs and doctors miss at www.endfatigue.com. Lymes Disease will turn into a chronic disease like CFS if it gets overlooked. Quote Link to comment Share on other sites More sharing options...
Alice Posted February 19, 2009 Share Posted February 19, 2009 Here are some pictures of the rash in dermatomyositis which presents with rash and muscle weakness. http://dermis.multimedica.de/dermisroot/en/39386/diagnose.htm Another thought is scleroderma, although I don't think it usually involves muscle weakness. http://www.mayoclinic.com/health/scleroderma/DS00362/DSECTION=symptoms And finally, there is mixed connective tissue disorder which has some characteristics of lupus, polymyositis and scleroderma. http://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675/DSECTION=symptoms Quote Link to comment Share on other sites More sharing options...
Remudamom Posted February 19, 2009 Author Share Posted February 19, 2009 Be very careful about relying on the lyme test. I have long term lyme and the initial tests that were done at Labcorp all came back negative. I then had testing through IgeneX and my test still came back negative, but with some significant bands being positive. Because of my symptoms, and the fact that I was incredibly lucky to have a doctor that realized how prevalent chronic lyme was becoming, we decided to treat and see how I responded. Most of my symptoms completely resolved within a couple of weeks and the remaining ones improved by 90%. My worse symptoms were joint and muscle pain which had gotten to the point where I spent most of the day in a chair because I could hardly walk. I had also been suffering from anxiety, trouble sleeping, and memory problems for years, which I did not associate with the lyme, until they all resolved with treatment. Treatment is antiobiotics, by the way. After being treated for a while, my lyme test came back positive. From what I understand, it "hides" in the immune system when the disease is strong, so that is why my test was initially negative. After it had been weakened, it showed up on the test. Obviously, I don't know if your son has lyme or not, but I just want you to know that the lyme tests are supportive for a diagnosis, but a diagnosis should be made based on symptoms and maybe response to treatment. If the test comes back negative and you rule everything else out, please revisit it and find a lyme-literate doctor. Lisa Well, they ran a Western Blot on dh and it came back negative, but we are awaiting the results of a more comprehensive test through IgeneX too. Dh has had a lot of anxiety, not surprising since he's having trouble working/sleeping/eating. My sister got about three negatives before a positive came through. Quote Link to comment Share on other sites More sharing options...
Tammyla Posted February 19, 2009 Share Posted February 19, 2009 Hope they can get it diagnosed and treated, it sounds like he's feeling miserable. I've known several people who had fibromyalgia or Lupus with similar symptoms. All were difficult to diagnose.:grouphug: Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 19, 2009 Share Posted February 19, 2009 Just don't forget that Fibromyalgia is a diagnosis of exclusion. There are many that have been diagnosed with it and it turned out to be something else, after years of not having the right diagnosis.:glare: Quote Link to comment Share on other sites More sharing options...
SapphireStitch Posted February 19, 2009 Share Posted February 19, 2009 This is probably something that would already have been considered, but is he taking any meds for high cholesterol? We've known several people who have had really bad muscle pain and other issues as side-effects of cholesterol meds. Low Vitamin D levels can cause pain problems. I have a relative who has psoriasis and psoriatic arthritis, and found out his Vit. D levels were frighteningly low...his doctor also tested him for low testosterone and found him very low on that as well. Between prescription-strength supplementation for both those issues he is like a new man. I'll pray that you'll find some answers soon! Quote Link to comment Share on other sites More sharing options...
Marie in Oh Posted February 19, 2009 Share Posted February 19, 2009 Yes, I repeat, CELIAC DISEASE! Rash, joint pain, muscle weakness, lack of appetite are all symptoms of Celiac. It is autoimmune in the same family as Lupus. I think fibermyalgia is often undiagnosed Celiac Disease. Quote Link to comment Share on other sites More sharing options...
muffinmom Posted February 19, 2009 Share Posted February 19, 2009 Please do have them check for MRSA. A boy we know lost his life to this yesterday. Surely your husband's doctors have considered this. From what I understand, it's easy to find out. Quote Link to comment Share on other sites More sharing options...
*LC Posted February 20, 2009 Share Posted February 20, 2009 I'll 2nd or 3rd dermatomyositis. My mom had this nearly 20 years ago. She had a rash. The muscle weakness got so bad, she could barely brush her hair. We were building our house at the time, and she couldn't walk up the stairs. Two months earlier, she had been hiking in Hawaii. I don't remember if she lost her appetite. She was put on prednisone pretty early on when doctors couldn't figure out what was happening. Lupus is one of the things that was considered. Good luck getting him feeling better. LC Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted February 20, 2009 Share Posted February 20, 2009 Please do have them check for MRSA. A boy we know lost his life to this yesterday. Surely your husband's doctors have considered this. From what I understand, it's easy to find out. My mom had symptoms for a year. They did all kinds of blood tests. They finally found the MRSA because of a benign tumor in her sinuses. We are so thankful she had a tumor or they still would not have done anything about it. Quote Link to comment Share on other sites More sharing options...
Soph the vet Posted February 20, 2009 Share Posted February 20, 2009 I know your hubby is not a horse or a dog but here's my list of rule-outs: Lymes Rocky Mountain Spotted Fever Auto-immune (Lupus, or other) And I'll include the Celiac and Dermatomyositis that others posted about because they seem plausible but I don't see them under those names in animals. Did they put him on Doxycycline pending test results? Quote Link to comment Share on other sites More sharing options...
kalanamak Posted February 20, 2009 Share Posted February 20, 2009 Yes, I repeat, CELIAC DISEASE! Rash, joint pain, muscle weakness, lack of appetite are all symptoms of Celiac. It is autoimmune in the same family as Lupus. I think fibermyalgia is often undiagnosed Celiac Disease. To look at the rash associated with this, google images dermatitis herpetiformis Usually by the time celiac is giving this many symptoms, labs will be off. I've seen b12, iron, folate, vit D and K deficiency all in one patient! Quote Link to comment Share on other sites More sharing options...
Sugarfoot Posted February 20, 2009 Share Posted February 20, 2009 This sounds like something that someone we know dealt with recently. Rocky Mountain Spotted Fever was my DH's guess. He was right. The correct antibiotic finally got him back to normal. It was getting worrisome. Quote Link to comment Share on other sites More sharing options...
Kanga Posted February 20, 2009 Share Posted February 20, 2009 My dad had a lot of the same symptoms and it turned out to be a reaction to his cholesterol medicne. However, I would think that the docs would have ruled out drug side effects by now. I will be praying for wisdom for the doctors and relief for your husband! Quote Link to comment Share on other sites More sharing options...
alpidarkomama Posted February 20, 2009 Share Posted February 20, 2009 Before I got to the end of your post, my first thought was "Lyme disease." Years ago, a co-worker's son went through exactly the symptoms you describe. Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 2, 2009 Author Share Posted March 2, 2009 Two of the bands came back positive, so we're going with antibiotic treatment until we can get in to see the infectious disease doctor. Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted March 2, 2009 Share Posted March 2, 2009 Have you read about how long you need to be on antibiotics? My cousin's son had it...and they didn't give it long enough and he has permanent issues.... They live in Colorado..and ended up going to CA for treatment... Quote Link to comment Share on other sites More sharing options...
Remudamom Posted March 2, 2009 Author Share Posted March 2, 2009 I think the first round lasts six weeks, then another and another for three months?? Quote Link to comment Share on other sites More sharing options...
Melinda Posted March 2, 2009 Share Posted March 2, 2009 I'm so sorry. At least you know what it is now though, and it can be treated correctly. I hope he recovers quickly, fully, and amazes the doctors with his progress. Good luck! Quote Link to comment Share on other sites More sharing options...
SonshineLearner Posted March 2, 2009 Share Posted March 2, 2009 Good about the length of time.... His was quite a few years ago... But I guess that some Drs still are on the short side for the antibiotics.... I'm glad they found out what it was! Carrie Quote Link to comment Share on other sites More sharing options...
LaxMom Posted March 3, 2009 Share Posted March 3, 2009 I was thinking of you the other day and wondering if you'd heard anything. I'm glad there is a diagnosis and a plan. I hope he gets back to normal soon. Quote Link to comment Share on other sites More sharing options...
Lizzie in Ma Posted March 4, 2009 Share Posted March 4, 2009 I hope the treatment he gets is correct/long enough. So many folks I know struggled both for diagnosis and treatment. :grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted March 4, 2009 Share Posted March 4, 2009 :grouphug:Prayers for a full recovery. Quote Link to comment Share on other sites More sharing options...
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