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Old 06-09-2012, 09:52 PM   #1
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Unhappy What Questions Should I Ask My Doctor?

Hi - I'm new here, so I hope I'm not going in to too much detail. I am hoping someone with experience with my symptoms may be able to offer some insight.

I am a 46 year old woman who used to be quite active. In my 30's, I began developing red and purple spots on my upper arms, shoulders, chest and neck. When I asked my doctor and a dermatologist about them they didn't have any answers about what was causing them, or any suggestions about how to make them stop or go away. The spots are about the size of a nickle, are flat, and now cover my upper arms and chest. Most of them have faded to a brownish-red color, but new ones (I still get them) are bright red. They are not spider veins (I have a few of those too).

Around the same time these started appearing, I started to notice that I would occasionally have periods of time when I felt ill - but in ways that were hard to describe. The skin all over my body would feel hot and irritated - and although it looked sort of "swollen" to me, it didn't get red or anything like that. When this would happen I would also feel achy and weak. I never saw a doctor for it.

Around the time I turned 40 I started feeling as if something was just wrong in my body, but I couldn't say why I felt that way. Looking back, I can see that I was starting to loose muscle tone, and I also became tired very frequently. I began to gain weight pretty rapidly - around 15 pounds in a 6 month period (but that was around 25 - 30 pounds ago), and I couldn't take it off. My stamina also started decreasing. I didn't see a doctor for it, and chalked it up to age.

4 years ago I started having severe muscle cramps all over my body. I have never been able to figure out what causes them or how to make them stop. Blood tests have shown that my magnesium levels are normal. I've asked my doctor about them several times and he's always just shrugged them off. These can be quite debilitating - I get them in my toes, feet, calves, thighs, chest (terribly painful), back, and hands. They happen day and night, and sometimes wake me up. They stopped happening for a few months last year - I can't figure out what to tie that to - but returned a few months ago.

3 years ago I came down with a bad chest infection (not pneumonia) that just wouldn't seem to let go. At the same time I developed severe pain on my left side. Several doctor's visits and x-rays later I still had the infection, and nobody could tell me what was causing the pain. It eventually cleared up (over the course of about 3 months), but I then proceeded to get sick again and again with the same thing. This last for a few months and then, miraculously, stopped.

A few weeks later I had a series of attacks that at first seemed to be heart attacks (hospitalized 3 times), but turned out to be a non-fatal blockage in a coronary artery. My cardiologist was surprised this had happened at such a young age, but didn't seem concerned about it. I haven't had any attacks since the angiogram, but that may be because the attacks were so painful/frightening that I stopped doing anything that might bring one on - so I became even more sedentary.

A few months later I started getting rashes of petechia on my wrists. At first, they seemed to be very isolated with no associated symptoms. My doctor looked at them, ran some blood work, and decided they were harmless. Within a few months I began to have flare-ups of these petechia that included the all-over skin "warmth and swelling/inflammation" I mentioned above, along with all-over muscle pain and severe fatigure. These bouts would last for anywhere from a few days to a week or two and then dissapear. I saw my doctor and began seeking a diagnosis in earnest. He initially thought I had an autoimmune disorder, but my blood test results came back normal except for an elevated WBC and NE# (which have been elevated - from 12 to 15 - since 2004 with no diagnosis). I was referred to a hemotologist who ran blood work twice (once the first visit and again a few months later). She discharged me from her care because I didn't have any kind of blood disorder.

A couple of months ago I began to realize that the muscle pain just wasn't going away, and I began walking with a limp. My feet began to hurt terribly when I walked - but stranger, it seemed as if they just had no muscle tone, and neither did my ankles. Within a few weeks walking was very difficult. Over this period of time I've also developed weakness in my arms and legs, and it's gotten difficult to do simple things like fold laundry or go the grocery store. I am also extremely tired all the time and get out of breath very easily. This is nothing like the sort of "lazy, out of shape" fatigue I got when I was younger -- in addition to the pain I feel very ill, and some days are spent mostly in bed.

My doctor is convinced something "is going on" (his words), and has referred me to a rheumatologist, a dermatologist, and a podiatrist - all appointments that are scheduled for the next several weeks. Today I got a copy of my latest blood test results and noticed that while everything else (besides WBC and NE, as well as a very low Vit. B6 level) was normal, I do have an elevated Aldolase level (it's 10.0 with a ref. range of 1-8). The only other abnormal test result I'm aware of is that when the doctor did a standard reflex test - when they knock you in the knee with a rubber mallet - my legs flew right up in the air. He repeated the test twice, and told me they were the reflexes "of a couch potato" (which I certainly am). Today, my doctor ordered all the same blood test results all over again -- I think he's hoping one of the autoimmune markers will show up (and I know those can take awhile to show).

Autoimmune disorders run in my family (my father has Wegener’s granulomatosis), but other than the elevated Aldolase, my markers are normal. I've had "flares" of whatever this is for years, but nothing that's lasted like this, or gotten worse like this has. I feel myself getting weaker by the day, less and less mobile by the day. Worst of all is the rapid decrease in stamina and increase in fatigue and generally feeling ill - if pain was the only thing I had to deal with it wouldn't be nearly as debilitating. Some days I feel like I just ran a marathon and have the muscle pain to prove it.

I used to be pretty active - I rowed in a competitive league and enjoyed jogging and walking. I have always (previous to this) had a lot of energy. I haven't done much of anything to improve my physical fitness level in a few years -- and now I'm too weak to do much. I'm also now about 50 pounds overweight :-( I so hope they find an answer soon.

In researching online I read a bit about myositis disorders, and also read the abstract of a neurological study about these types of symptoms in people with elevated Aldolase but normal CK. Should I ask one of these doctors for a muscle biopsy? Does the types of rash I described above sound like the rash associated with dermatomyositis?

Sorry to be so wordy, and thank you for reading - any suggestions would be helpful.

Last edited by txpacotaco; 06-20-2012 at 06:06 PM.

 
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Old 06-20-2012, 05:22 PM   #2
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Re: What Questions Should I Ask My Doctor?

Myositis can be part of autoimmune disorders such as lupus, mixed connective tissue disease, dermatomyositis, polymyositis and others. I would be sure your blood work has included a recent sedimentation rate, CRP, ANA, CPK, Rheumatoid factor, and thyroid studies, as well as urinalysis, liver and kidney function tests. Hyper(excess thyroid)thyroidism and hypo(insufficient)thyroidism can both cause muscle aches, pains, weakness and fatigue, as well as hyperactive active reflexes (hyperthyroid). There is a new lupus test out that is more sensitive than the standard, and I would ask for that. It is called AVISE-SLE (blood test).
A biopsy of your skin spots might help and the Dr. should ask for immunofluorescence studies with that to look for immune complexes deposited in the skin layers. Dermatomyositis usually causes extremely high CPK and aldolase levels, so that is unlikely but not impossible. Given your age and description with minimally elevated aldolase, lupus would be my first priority to rule out. Pursuing a diagnosis is important because then you can get on treatment and feel better!

 
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Old 06-20-2012, 06:00 PM   #3
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Smile Re: What Questions Should I Ask My Doctor?

Your answer is very reassuring because other than elevated Aldolase, WBC and NE# (and a very low Vit B6), my blood tests were all normal - including those you mentioned, but not including the new test for Lupus, which hasn't been run. I've tested very low on Vit D in previous years' physicals, but don't know where I stand on that one this year. I was a bit panicky when I saw the Aldolase test result because my dr didn't mention it, and all I knew was what little I could find online about it (hadn't heard of it before). Hopefully, it was simply an anomaly - or elevated too little to worry about.

I see the rheumatologist for the first time tomorrow and will mention the skin biopsy and new Lupus test to see what she thinks. I've also been referred to a dermatologist (in July).

Another approach I'm trying (and plan to try before I introduce any of the heavy-hitter drugs, if suggested) is a major lifestyle switch to a whole-foods, plant-based diet. I'm also going to ask her about the possibility of a therapeutic fast (have been doing some reading about this lately) -- maybe my body is headed towards something autoimmune related, and maybe I can turn things around with some improvements in my lifestyle.

Thanks for your reply - good timing!

Last edited by txpacotaco; 06-20-2012 at 06:02 PM.

 
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Old 06-21-2012, 02:22 PM   #4
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Re: What Questions Should I Ask My Doctor?

Just wondering-what range do your neutrophils run in and your lymphocytes must be low to balance that out. Have you ever seen an infectious disease Dr. to rule out a hidden infection, such as abcessed tooth, occult abdominal abcess, etc? Some Dr's will order a gallium scan of the body to rule that out. Are you on medications that could cause the elevated white count and neutrophil count? The high WBC is opposite what you'd expect in lupus. Many lupus patients run a LOW WBC but high neutrophils and low lymphocytes, called lymphopenia, as they balance each other out. Inflammation by itself can cause a high WBC, but I would expect a high sed rate and CRP with that. Not everyone shows the "textbook" picture though. This high WBC and left shift is usually seen with some sort of infection, so I would consider seeing an infectious disease doc just to make sure there is no occult infection making you feel sick.

 
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