Multiple Sclerosis

[fwlady]

I will try to sum this up. After searching again, I wonder if my daughter is showing the signs of MS The biggest thing that I have recorded in her journal is that every flare up she has is worse than the one before. She is better today, but I fear that next time, she won't be able to walk at all.
Initially, she had hip pain with a limp but the xray was fine. By Monday, all her right joints were in pain, her knees and ankles. They found she tested positive for strep, which we know now came from a dog bite 4 mos before. But, she had no symptoms before or after, or the headache and fatigue she had at that time has not curbed when she is flared up. They put her on two different ABx. She limped for 6 weeks, and the dr gave us a rheumy referral. He said it could be reactive arthritis or the start of JRA. For that month, she would be bad and get better, then bad again. Flares were shorter but more severe.

A month later, she has improved greatly, and the rheumy said to bring her back in a flare. Six days later, she was doing worse than ever. She couldn't walk the stairs at all, and I had to push her in a wagon. She also had redness and heat on her extremities, but now we think that was from an allergy to the Aleve the dr wanted her on regularly. The rheumy said it was NOT arthritis, probably neuro pain, and referred us to the pain dr. Our ped tested her for Lyme. The rheumy didn't check her back as that was the next area that hurt her after a while. But ran some tests. Her bloodwork was all fine, again. Urine was normal, xrays were normal. Her ped did xrays of her back, at my request, all normal. Thought she could have a slipped disc or pinched nerve. Our ped said that if this cont, he will order an MRI

I zoned out when the rheumy said pain dr, because she is undiagnosed, and I am not comfortable hopping her up on Tylenol 3, or just masking the pain. She and I have already gone over the possibility of psychosomatic pain, and I am sure that is not it. We have childhood cancer in our family, but her bloodwork has been fine. I don't think it would come and go with cancer though.

So, when I saw pain that comes and goes, but gets progressively worse, I thought I would ask here if our story is familiar. We don't have MS in our family though, as far as I know.

The rheumy says it isn't arthritis at all, reactive or JRA, because she had no inflammation or swelling at the exam, even though she could barely walk. Her pain is all weight bearing or bending, not much by touching her except her back, she says. She did have one leg swell up one weekend on the first short severe flare up after the 6 weeks of limping.

If and when she flares again, I am going to ask the dr to do that MRI but full body, not just her back. She does have lots of headaches, but no dizziness This last flare, she could only walk 2 steps in the AM at a time. She is worse in the AM, and improves some or a lot during the day. She has a lot of sleep disturbance, and cannot swallow pills even at almost 12 yo. She has a really bad gag reflex. I am sure she is too young for this, considering it isn't in our family. But, I am desperate to find what is wrong with my daughter. It breaks my heart to see her like this. Kymberli

[Linda V.]

Ask your dr. to do some testing for Lupus. My granddaughter got it at eighteen. NO ONE else in our family had it before. She had a stroke, and they could not figure out what was wrong. After two years and two T.I.A.'s they found she has "Sticky Blood" and Lupus...Good luck! Read everything you can, and go with your gut feeling. We have to continue to TEACH the physicians!

[fwlady]

thank you very much. I have considered Lupus, especially after she started showing neuro issues, and this rash on her chin twice now. It is a strange rash, but it looks like RMSF, which she tested pos for. They said she couldn't have had RMSF, because it is a fatal disease if not treated, but I wonder if the dog bite had just a teeny bit of this, and it passed to her that way. But, they said that was impossible. Since she hasn't had any tick bites and this all started in the winter, RMSF doesn't make sense from her symptom onset, but it makes perfect sense if the dog bite caused it. Now, her pain isn't so much now, but she has had dizziness until noon, numb leg twice, forgetting how to navigate the store, when she goes in there ALL the time, pins and needle pain twice at night, etc. So, it still makes me wonder about MS, and of course, lupus. Thanks, Kymberli

[Linda V.]

Often times, Lupus is dismissed. It is not unusual to take many years for a diagnosis. Does your child have allergies to bug bites, or any other things? The symptoms can be so vague and not have a significant pattern. With SLE it can often consist of periodic joint pain, and itching. Especially during the night. Some drs. just take the "It will either get worse and we will figure it out, or it will just go away" attitude. Easy for them to say. I do believe that is why it is the "Practice of medicine." Not an exact science! Two and two do not always make four. Keep at them, and do not let them disregard your childs symptoms. They are real, and need to be addressed. Unfortunately, you have not found the RIGHT doctor yet. Please keep in touch!

[fwlady]

Thank you so much. She will see a neuro in 2 weeks, if not sooner at a closer hospital. I don't know if they can dx lupus, but she is having more neuro symptoms now than pain. So, it is the logical way to go. Initially, when the rheumy said neuro, he wanted to send us to the pain dr, and that didn't make sense to me. If it is neuro, a neurologist would be more logical, and this was before we noticed the other neuro symptoms besides pain. Now, she seems to keep adding symptoms, but it is still tolerable. thank you again. Kymberli