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Posted: 29 November 2015 04:58 PM   [ Ignore ]  
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Hello everyone,
My name is Chasity and I have an 18 year old son who has been dealing with something for the past 8 years. We have been to every doctor and specialist imaginable. This started when he was like 10 and has gotten worse of the years. His main complaint is that he feels like he is burning under the skin especially in the sun or under UV lights. He describes it as if his blood is boiling. Sometimes he will get little blisters. He also has migraines which we have under control with medicine. He get dizzy. He has nausea to the point that sometimes he doesn’t want to eat. Certain foods make him feel worse than others. He has stomach pains. When he spends the day out with us then he spends next couple days trying to re-cooperate. He sleeps alot during the day and is up alot at night. He has trouble with his eyes and his eye dr says he has keratoconus where his eye is starting to bulge and flatten. We have to go back every 6 months as his prescription keeps changing and possible will require surgery. We live in TN and we took a trip about 3 years ago to Minnesota to the Mayo Clinic. They thought he may have POTS and said a tilt table test would confirm it. We did the tilt table test and it came back normal. They said it is still possible POTS but I just dont know for sure. We have continued seeing other drs. as our pediatrician was not sure either. We have currently been seeing genetic dr and has two sun allergy test ran both came back normal. Going to see dermatologist who specializes in rare diseases Tuesday. Hoping he can help us. Does any of this sounds like POTS? Is there any direction you could give us to help finally get answers for my son? Thank you for your time.

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Posted: 30 November 2015 10:02 PM   [ Ignore ]   [ # 1 ]  
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Typed a reply last night but it never showed up.  Weird.

There is a condition fairly recently named called Mast Cell Activation Syndrome or MCAS that you should look in to, and it commonly coexist with POTS and EDS.  It is basically when mast cells that the immune system stores pre-made chemicals in get triggered to dump their contents (degranulate) inappropriately.  The process acts quite differentry from traditional allergic reactions, and most of the time triggers won’t show up on traditional allergy testing.  Stomach pain is quite a common symptom, uv sensitivity less common but I’ve heard more than a few patients mention it.  There are a myriad of different skin reactions I’ve seen described.  Other common reactions are flushing, hives, swelling, blood pressure goes high or low or fluctuates between, headaches, and quite a few suffer anaphylaxis with throat closing/swelling or loss of blood pressure and need epi pens for this emergency situation.  There is no clear explanation of how MCAS gets kicked off, some like me have had symptoms since childhood but got worse suddenly at some point, others it’s out of the blue and suspected to be from insect venom, viruses, powerful antibiotics,  etc.  Common triggers are alcohol, insect venom, nsaids, opiates, antibiotics, fragrances/smells, foods, various medications or the fillers or colors in them, stress, weather, and the list goes on. 

Treatment is usually antihistamines to block the cascade of histamine released from the mast cells, you will see references on this site to zantac+zyrtec being a good starting point to try.  There are also mast cell stabilizers that help keep the mast cells from degranulating.

Since you are going to a dermo, you could start with asking for testing for mastocytosis, which is a related condition but consists of the body over producing mast cells.  It is more rare than MCAS, but must be ruled out. Most dermo’s should be at least a little familiar with mastocytosis since the disease often includes skin involvement.  First test is generally a blood test for Tryptase, a high level would point to possible mastocytosis.  You could ask the dermo to biopsy any spots that regularly itch or swell up and ask for them to be specifically stained to look for mast cells.

It’s tough to be concise with this info, but there are now many resources out there.  Tmsforacure.org is the US Mastocytosis Society site, mastocytosis.ca is the Canadian site.  Feel free to ask me any questions, I’m a moderator on one of the Facebook groups.

Cheers,
Leslie

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Posted: 01 December 2015 09:21 AM   [ Ignore ]   [ # 2 ]  
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Yes, I’ve lost many a long post, so I’ve learnt to type my reply out first in wordpad, then copy and paste it. That way I can still read the post I’m replying to at the same time. Thanks for the explanation of Mast Cells too Leslie.

Chasity, it would be a good idea to get a true picture of the full extent of your son’s suffering, Dr Diana has created some ‘symptom checklists’ where you can check off and keep a record of the things your son experiences, below is a link to the one for Chronic Fatigue which, it sounds like, is part of your sons condition.

http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e

Here’s the direct link to the download:
http://prettyill.com/downloads/Chronic_Fatigue_Syndrome.docx

You might also want to watch the following video, as migraines and other body pains can simply be a magnesium deficiency - easiest way to replenish this is Epsom Salt baths.  Unfortunately certain drugs further deplete magnesium in the body (particularly some painkillers and some stomach meds).

http://prettyill.com/videos/watch/the_magic_of_magnesium

Let me also tell you that I was diagnosed with features of POTS, even though I was basically ok on the tilt table test.

His nausea could be being caused by raised intracranial pressure, which may improve with the epsom salt baths (or footbaths - if he doesn’t have the energy) only time will tell, just something you can be doing in the meantime until his doctor gets to the bottom of it.

I would also try to ensure thay your son takes a good multivitamin and mineral supplement every day because this will help his body to carry out some of it’s tasks, in the event of insufficient nutrition, which can easily happen when you’re often feeling nauseous. This may improve his energy levels (B vitamins, copper, zinc, manganese), his sleeping pattern (B6), his immune system (Vitamin C, Vitamin D, zinc, selenium, etc), his skin (Vitamin C, etc), multiple body processes (Iron, Vitamin D), his memory (Vitamin E, Vitamin C, B Vitamins, Omega 3, Selenium).  I can’t recall all the full lists from memory but, you get the picture, he needs these every day.

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