Feel like I'm getting nowhere.

[frenchiemum]

Hi everyone, I wrote a post a few weeks back regarding my first heamotology appointment. I had the appointment and was told that my neurological symptoms are common in aps sufferers. I felt relieved that I finally found someone that understands and now I can start on the road to treatment. The specialist put me on low dose Aspirin and told to come back in four weeks. Today I had my second appointment with another heamotologist? She said that she doesn't understand why I'm fatigued, have joint pain and cognitive issues. These symptoms are made worse when I have alcohol/vinegar and I think other foods that I have all of a sudden become allergic too. These bring on huge flares and now we are back to the maybe you have ME diagnoses or maybe it's just allergies. I'm so confused. I understand if I have both issues running alongside of each other, but I've also read that many aps suffers also have these nurological symptoms.

After I pressed she did mention that they may start my on a heprin trial in two months to see if the injections releive my symptoms.

Also, they keep mentioning they see nothing on my MRI scans.

Sorry for they confusing post.

[KellyInTexas Administrator]

Hello,

I would propose to you that you likely have MCAS ( Mast Cell Activation Syndrome) running in tandem with your APS.

A well known and recommended APS Specialist Rheumatoligist told me that about 50% of APS patients do have this, but there is a very high false positive testing occurrence.

It’s more often seen when Sjögren’s syndrome accompanies the APS, and very often Sjögren’s syndrome symptoms ( sero negative Sjögren’s but presenting as sicca syndrome ) may proceed positive tests for Sjögren’s for as much as 10 years.

Alcohol and vinegar are both known triggers for activating MCAS. ( avoid all canned foods, and pineapple. Only fresh foods. Avoid left overs. The only fish to have is fresh salmon. Avoid chocolate. Avoid night shades. ) That’s a basic guide line. The overarching principal of MCAS is a histamine intolerance. The foods I have mentioned are high in histamines.

[KellyInTexas Administrator in reply to KellyInTexas]

Sorry, meant to say false negative very common with MAST

[Yllek]

Oh no! You need to contact the hospital and tell them you only want to be seen by the original consultant you saw.

Tell them she fully understands APS and you want continuity of care.

I have only ever seen the one doctor there, as you know, and this is the reason why.

I’d phone her secretary and tell her what’s happened and she will relay the message to her and is able to bring your appointment forward to see her specifically again.

Let me know if you want her name and number. Don’t leave it like this x

[frenchiemum]

I had 2 appointments yesterday as I'm still under a clinical pharmacist, she explained the same as the other heamotologist that I seen, that it might be allergies. I said to both of them that it might also be autoimmune, as I have ulcerative colitis also. She said that they have tested for them all, so to air on the side of caution I requested a copy of all my tests. This way I can make sure which disease they have tested for and can see if I've been for sjogrens, hashimotos and celiac.

After reading a bit on MCAS alot of the symptoms seem to match my own. Have you any suggestions on how i would suggest testing for this by my doctor? Will this show up on the allergy test they are have taken.

I will also get in touch with Dr martlews secretary and ask for continuity of care. You really do have to become your own advocate don't you.

Thank you all again for your great advice. It means so much.

[Yllek in reply to frenchiemum]

Oh I forgot to say that I have suspected MCAS but wasn’t tested at Liverpool - I went to see a Dr in Lincoln! I’ll tell you about it when I see you x

[bookish]

It may be MCAS but histamine can be hard to process for other reasons - have a look at

purehealthclinic.co.uk/hist... to give you some ideas. (A very useful site and lots of info about testing if needed). Autoimmune conditions involve loss of tolerance to foods and chemicals - as Datis Kharrazian puts it "oral tolerance, the term researchers use to explain the immune system’s ability to appropriately tolerate foods while protecting the body from bacteria and other harmful compounds" - linked to barrier hyperpermeability (not just 'leaky gut' but leaky skin etc). Have a look at his site too drknews.com/food-sensitivit... Cheers

[MaryF Administrator]

Hi, I have a mast cell disorder, I have terrible episodes of Steven Johnsons Disease with infection and also various drugs including antibiotics. I also have a Thyroid problem and various other diseases in including Lupus. I have a problem with gluten, so never eat it, been free of it for years.

I am fine on nightshades and also vinegar, but certain things like Soya upset me a bit, not drastically but certainly enough for me to notice. I did my own Thyroid tests to find out what was going on, as the TSH, (the test done in most GP surgeries and clinics), originally did not reveal much. I also made sure that my B12, Folate, Ferritin and D was all up to scratch. and either I or my various medical doctors keep an eye on it all.

It is really not uncommon to have allergies with this disease, and as Prof Hughes often says, the trio of disease is often Hughes Syndrome/APS, Sjogrens and a Thyroid problem. In fact a lot of this will be discussed at our next Patient's Day in London. MaryF