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An update and some questions (Read 3324 times)
ruth
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An update and some questions
11/20/11 at 07:44:45
 
Hi everyone, I haven't posted in a while as we have been through another international move, and just biding my time waiting to get on and find a new doctor and start the push for a diagnosis again. Cameron has continued to be much the same, although a little better since leaving the hot tropical climate of Singapore and now into winter weather in Europe. However he continues to be always itchy, with constant mild headaches which escalate to more severe, and migraine about once every month or 2, and all the other ongoing things like dizziness, fatigue, occasional abdominal pain and nausea.

A dermatologist we saw in Singapore for treatment of persistent warts said he has white dermagraphism - has anyone heard of this or know anything about it? He often gets white flares rather than red in response to pressure.

While in Australia (our home country) in the middle of the move he saw  our family doctor there. I was explaining Cameron's history over recent years and that I was looking into the possibility of it being an activation disorder. He was quite receptive to that likelihood, a real surprise to have a doctor agree and not need me to explain what I mean, let alone convince him. However, being a GP, and as we were only there for a month, he couldn't give me any more help to figure out where to go next, as he said he would have suggested antihistamines, MC stabilizers and singulair, and then referred us onto a specialist. The validation was really nice though.

Now I have found a new doctor and started the process of getting her to help us. She started by doing a round of blood tests, which ruled out a number of things, and showed that his IgE has come right down since last tested - now 191, which is still a bit high but nothing like in the past. The other significant results are that he is severely deficient in vitamin D (11.9), and his reticulocytes are low. She also mentioned another abnormal finding related to the ANA but I need to get a copy of the results to clarify that (got the results verbally over the phone, and she is not a native English speaker so it was hard to get that detail). He will start vit D supplements and it will be interesting to see how that helps with some of his problems, like fatigue. I have also read that it can have an effect on the immune system, particularly regulating it's reactivity, and that there is a suspected correlation with autoimmune conditions being triggered by low vit D. Has anyone else heard this and seen a correlation with their own symptoms?

Does anyone have any idea why he  might show borderline levels in blood tests, it seems every blood test he has something is a bit off to do with his RBC's, sometimes his haemoglobin, another time it was the shape/volume of them. Never anything too extreme or a definite condition, just never quite right. So often it is dismissed as post-viral, when he doesn't actually seem to have had a virus.

The other result that was off is uric acid. The doctor suggested dietary factors that could cause this, but does anyone know of another reason this could be high?

My next move is to make email contact with Dr Escribano in Spain, and to give some articles to our new doctor to read. She has a pretty open approach, but this is not something she has knowledge or experience of, so I don't know how far we will get with her. Even just trying to discuss testing for evidence of mediators went beyond her, and she didn't seem to know where to go with it. This trailblazing routine is wearing me down a bit, but I am thankful to this avenue for being supported and encouraged not give up.

Ruth
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Joan
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Re: An update and some questions
Reply #1 - 11/20/11 at 15:56:12
 
Did you see the post about the European Competence Network on Mastocytosis?  You might find a doctor or place to consult in whatever country you live now.

Good luck.  Glad Cameron's doing better.  Hope he continues to improve.
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ruth
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Re: An update and some questions
Reply #2 - 11/20/11 at 19:26:56
 
Yes Joan I did. Unfortunately no-one in Belgium but we are within  a few hours of a number of them. Just have to sort out the technicalities of seeing a doctor in another country. It is also directed at Mastocytosis, with only a handful for the MCAD list, none of them pediatric. Dr Escribano in Spain is further away but will probably be our best option.  I'm not sure if the Vit D finding helps or hinders, is this going to be seen as the explanation for many of his problems and therefore less likely that he has something else to look for like MCAD? Can't imagine he has been deficient his whole life without it being picked up before now, but he has never been tested before.
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Joan
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Re: An update and some questions
Reply #3 - 11/22/11 at 19:26:17
 
I have to agree that Dr. Escribano might be the best option.  Good luck!
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ruth
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Re: An update and some questions
Reply #4 - 11/22/11 at 23:12:09
 
Thanks Joan, I have just sent an email to him, I will post when  I hear back from him.

Do you have any opinions about the vitamin D connection with the immune system, and whether this will be seen as the explanation for many of his problems rather than the immune system being the underlying problem? I can't see the wood for the trees at the moment.

Ruth
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