Today, the doc said that all the labs looked good; Celiac panel neg, thyroid, liver, and kidneys good. Sed rate and CBC normal, and CK retest normal. And, she said she had her ANA tested twice 3 mos into this, both negative, so that may rule out lupus. Since the heat can cause her to flare (or get worse), and seems to be the only consistant trigger, I wondered about lupus, which can take a long time to show up.

I have been told that it still happens that after many years of symptoms, the child can finally have positive tests, be diagnosed and treated.  A friend related to me 8 yrs her DD suffered with flare ups, before being Dx, after waking up unable to walk. Dx JRA in a week, and 8 mos in a wheelchair. Ugh. I sure pray this isn't our fate.

Our doc didn't give us much hope for diagnosis either. She said sometimes an ailment can be too mild to show in the bloodwork, and we never find out what it is. But, she did do a good physical on her, and is going to MRI her lower back. She also ordered PT, because her thigh muscles are tight. I don't know if it is because of all the issues she has had, or if the tightness is a symptom of her true diagnosis. Her CK is fine, so that rules out possible muscle/metabolic issues, as this was a concern if it continued to be low.

So, that is our update. I think the PT is well overdue, and it is possible that the Doxy takes care of her. If this is residue from RMSF through the dog bite, then the Doxy will kill the bacteria, and either eliminate or lessen anymore flare ups. We are always hopeful that the last flare up will be the last. KWIM? Kymberli

Antibiotic Therapy - Road Back Foundation

http://www.roadback.org

 

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter.  Doing well on Methotrexate and Remicade.

I remember your postings from a few months back. I'm sorry to hear that your daughter is still struggling with this. Can you list her symptoms again? My daughter has been having some problems (not related to her previous JRA) as well and her doctor is ordering tests to look at her glands (pituitary and adrenal). When there are hormone related problems it can cause a number of strange symptoms. Is that something you have already ruled out?

They have done multiple xrays; feet (her 2nd toes are odd but ok), rt knee (variant inflammation of rt knee they said was unremarkable and said was normal), hips and back (normal). They have done tons of bloodwork, sed rates normal, ANAs normal, CBCs normal. One CK low, the 2nd normal. Lyme negative. RMSF (Rocky Mountain Spotted Fever) positive twice, but this could only be possible if she got it through a dog bite on 8/8/08, which most drs would say was impossible. Not treated for it until these past 2 weeks. Strep numbers were high, also from dog bite. Never had the full blown illnesses. Rheumy said no evidence of arthritis, reactive or JRA. EEG and head MRI done by Neuro, all normal. Her thyroid, liver, and kidneys all working properly. Urinalysis normal. I also read that if you have had RMSF, you can get a false positive for strep. Since she had strep titers, I am not sure hers were false. Celiac panel negative.

She had the stiffer thigh muscles, like I said. Just not for sure why this is. And, if we should take her in for the PT when she is flaring immediately, or if we should cancel, and only do it when she isn't. I will ask the PT person of course.

They haven't tested her pituitary or adrenal glands as far as I know. Someone else mentioned this hereditary blood clotting disorder, that is lupus with clotting. I may have her tested for that if the Doxy doesn't keep her well. I have had a blood clot at 15yo, my grandma and aunt had very early mini strokes, my grandma had full blown ones at a relatively young age. So, this could be very likely. I know this is in our history. So, that may be promising to get to the bottom of this. But, if it is Lupus, we have to find a different rheumy, obviously. DD's therapist does have several referrals. And, I applied to Shriner's, and we will see if we get a call from them. The closest is St. Louis, but I have family there. Kymberli

Multiple Sclerosis: Recognizing Multiple Sclerosis

Multiple sclerosis symptoms generally appear between the ages of 20 and 40. The onset of MS may be dramatic or so mild that a person doesn't even notice any symptoms until far later in the course of the disease.

The most common early symptoms of MS include:

• Tingling
• Numbness
• Loss of balance
• Weakness in one or more limbs
• Blurred or double vision

Less common symptoms of MS may include

• Slurred speech
• Sudden onset of paralysis
• Lack of coordination
• Cognitive difficulties

As the disease progresses, other symptoms may include muscle spasms, sensitivity to heat, fatigue, changes in thinking or perception, and sexual disturbances.

• Fatigue . This is the most common symptom of MS. It is typically present in the mid afternoon and may consist of increased muscle weakness, mental fatigue, sleepiness, or drowsiness.
• Heat sensitivity . Heat sensitivity (the appearance or worsening of symptoms when exposed to heat, like a hot shower) occurs in most people with MS.
• Spasticity . Muscle spasms are a common and often debilitating symptom of MS. Spasticity usually affects the muscles of the legs and arms, and may interfere with a persons ability to move those muscles freely.
• Dizziness. Many people with MS complain of feeling "off balance" or lightheaded. Occasionally they may experience the feeling that they or their surroundings are spinning; this is called vertigo. These symptoms are caused by damage in the complex nerve pathways that coordinate vision and other inputs into the brain that are needed to maintain balance.
• Impaired thinking . Problems with thinking occur in about half of people with MS. For most, this means slowed thinking, decreased concentration, or decreased memory. Approximately 10% of people with the disease have severe impairment that significantly impairs their ability to carry out tasks of daily living.
• Vision problems . Vision problems are relatively common in people with MS. In fact, one vision problem, optic neuritis, occurs in 55% of people with the condition. Most vision problems do not lead to blindness.
• Abnormal sensations. Many people with MS experience abnormal sensations such as "pins and needles," numbness, itching, burning, stabbing, or tearing pains. Fortunately, most of these symptoms, while aggravating, are not life-threatening or debilitating and can be managed or treated.
• Speech and swallowing problems . People with MS often have swallowing difficulties. In many cases, they are associated with speech problems as well. They are caused by damaged nerves that normally aid in performing these tasks.
• Tremors . Fairly common in people with MS, tremors can be debilitating and difficult to treat.
• Difficulty walking. Gait disturbances are amongst the most common symptoms of MS. Mostly this problem is related to muscle weakness and/or spasticity, but having balance problems or numbness in your feet can also make walking difficult.

Other rare symptoms include breathing problems and seizures.

Did you ever get an MRI done? Did they do one of her brain or were you at that time looking to get one of her back? I found another site with more symptoms of MS....

http://www.mult-sclerosis.org/mssymptoms.html

Doctors can be frustrating. They all only want to work within their small area of specialty. You have to go from one to the other and keep pushing forward. Trust your instincts... Don't give up and you'll find your answers.

I am not convinced it is JRA, but since she has been doing so well from being on the Doxy, then it was most likely the Rocky Mountain Spotted Fever, from the dog bite, that has caused all this. Which would make her joint pain a tick borne arthritis. I just don't know, maybe she did have arthritis that will go away. But, if she had no real evidence of arthritis, perhaps we are still barking up the wrong tree. We just have to wait and see if it all goes away, or if it turns autoimmune since she went undertreated for nearly a year if it was the RMSF. Of course, it isn't clear in the research if the joint pain is arthritis or neuro pain in the joints. So, talk about confused. LOL

She did have an MRI, to your question. It was just her brain and without contrast. I wish they would have used contrast. The neuro did an EEG too. And, now that you mention it, we were told to call the dr in a week if we didn't get the call for the back MRI. I better check my answering machine upstairs. They usually call my cell too, so I would think I would get the call. Even if she does  have MS, it could take YEARS to get the lesions on the MRI.

Someone told me that they found 2 articles that said RMSF can be transmitted by a dog bite, although my dr told us that was impossible. I think that is our answer. It think that is what we have been dealing with. I have always thought that, especially after she tested positive, but I thought it would be Lyme that she would test positive for. RMSF was a real shock. So, it is just a matter of time before it all gets out of her system. In my optimistic viewpoint. Kymberli

I hope the antibiotics finally get this under control for her. I still just can't believe a doctor told you your daughter was faking it! I would be really upset about that if someone said that to me. Mothers know when our kids are in real pain.... no child would fake months of pain. It upsets me that someone would treat you that way! Keep us posted on how she is doing. I think I would see someone else for a second opinion if this medication doesn't have lasting results.

Take care,

Julie

Christiaan had her PT eval today. I went back with her, since they usually need the parent's input anyway. From now on, she should be able to go on her own. Since I have no diagnosis, they wanted to know all about her journey, and so I had to go over that again. She said it could be residual from the bacterias. But, we all really just don't know. Christiaan still says AM is worse for her. Heat brings on the pain. Her back was hurting today, and her legs the last two nights, but not too badly. They said to bring her, flaring or not, to all appts, which they said we only need twice a week for 2, and once a week for 2. So, that is good.

They were doing her posture, and were talking, that her left hip is just slightly higher than the right. And, her lower back seemed to have less mobility. They said to def get that back MRI, so we can get more info. They did notice the muscle tightness down the side of her right leg, and her right hip is a little tight too. But, it is all very slight.

I asked with their experience, is this from all the pain coming and going, or is this a puzzle piece to what is going on. They said, only time will tell, they can't know now. But, usually, kids get better with PT. So, that is good.

I asked if we should do another xray of her hip to compare, and she said it won't show soft tissue. So, I wonder if we should have her hip MRI too. We can wait and see what the back MRI says. I called the dr today, as I was told to call if I didn't get an appt this last week. No call back. Grr. I have to call again tomorrow.

So, that is how it went. She has been feeling pretty good today.

One more thing. The dr said at our visit last week, that she would have the month of PT, and in 6 wks, she would do a complete physical on her to see where we are at. She even mentioned a "bottom check", which I guess she was just giving us a heads up about. But, why??? And, I sure pray she was NOT talking a pelvic for a 12 yo virginal girl. I am going to ask to clarify, but I don't think that my daughter is going to be comfortable with this. We are a modest family, and since she had an issue at 8yo (got this taken care of instantly), I think this could be traumatizing for her. So, what do you all think? Do I tell the dr that it doesn't apply, so I won't consent to it. Which could open its own can of worms. Or, do I just tell my daughter what to expect, and see how she reacts. She could tell the dr herself that she isn't comfortable. But, then the dr may wonder why, and we have nothing to hide. It really doesn't apply though. Kymberli

And, as far as yearly checks, they don't do paps on girls just because they start their periods. This shouldn't be done until they are s*xually active. I don't want to start a debate or argue over this topic. I would NEVER consent to a pap on my child unless she was having major female problems, or s*xually active and needed an STD check, etc. It would destroy her hymen, introduce germs, cause an infection, and probably anxiety, etc. And, since we teach the girls modesty, it would be confusing to them why we would have the dr do a check that is unnecassary. I was told by others that they don't do paps on children who are virgins. I never considered this is what the dr could be talking about. EEEK!!! That horrifies me, really.

Anyway...back to why I came over. They did her back MRI, and her PT is going well. I was told by the tech they would send results over today, but that is pretty quick. So, I guess we may find out why she has "less mobility in her lower back" as the PT ladies put it. I really think this is all RMSF and strep related, and she will just get better over time. But, I read that it can take 6mos-2 yrs to get it all out of her system. She has been quite a bit better since the Doxy, even though she did have one flare up, it wasn't as bad. And, she has discovered that if she ices her joints, they get better. If she gets in the cold pool, the pain is gone for a long time. So, at least we can fix her pain. THAT is important. Kymberli