Immunologist/Allergist Appointment

[Pumpkin2009]

I had an appointment with the immunologist/allergist. As I had written earlier, I was extremely nervous and doubtful about the whole thing. He turned out to be very nice, a great listener, didn't look at me like I had 2 heads, knowledgeable. I started with only 2 main concerns - the almost daily diarrhea and sinus drainage, told him about the lupus and the still no taste from Covid Nov. 2020 and that is when these symptoms got worse. My blood was tested for tyrptase for Mast Cell Activation for a baseline before I left. He had already mapped out a plan for MCAS. The results came back for the tryptase as slightly elevated, but to really know what is happening, you have to be in the midst of an episode which is extremely difficult. That is why if is they suspect it, they start treating it to see what happens. So, I am taking 4 Zyrtec a day and nasal spray. At first I was ecstatic thinking this was going to be a magic bullet. Then the more I have learned about it, not quite like that. Much more complicated and I have so many of the symptoms and like everything we come up against, there is the overlap of what is lupus, hyperparathyroidism, etc. of what we already have going on. Just have to go from here. He said that this is just a start to see how my body reacts. Lupus is linked with mast cells, but in particular with the skin. It can affect organs like lupus does. It targets the gastro and sinuses.

So will just have to see what happens. He was very interested in the Covid as well.

If anyone knows anything about this or is experiencing the possibility of mast cell activation, I would so appreciate some help.

Healing hugs.

[PMRpro]

Did you have the diarrhoea before Covid? There is a form of IBS that is triggered by a viral infection - always worth considering.

[Pumpkin2009 in reply to PMRpro]

I have had gastro/intestinal issues before Covid, but much different than this. They actually got better when I discovered by accident that generic plaquenil filler can cause problems. I switched to non generic which I pay more for, but seemed to have been the culprit in those problems. They were episodic and very frightening.

The mast cell activation is linked to Covid as well as other viruses and IBS. IBS seems to be a catch-all for intestinal problems that there isn't any answers or fixes. Will see how this plays out for the moment. The other issues that is really bothering me is worse fatigue and exhaustion that from lupus.

Thanks so much for your help. You are always so knowledgeable.

Healing hugs.

[KayHimm]

Pumpkin-

I was worked up for mast cell activation disorder after I started having weird symptoms from heat, chemicals, changes in temperature, touch.

In my case it turned out to be autoimmune dysfunction. The mast cells apparently sit next to autonomic nerves and inter-relate.

You might want to check out some of the patient mast cell sites. I found them helpful. I was taking Zyrtec and at times benedryl for the three months before seeing the specialist. I noticed no improvement. If you see see improvement, that will be very positive.

Do you have episodes where you sort of crash? I was not like that - had a feeling of being etherized after contact with a trigger. I was vasodilating. Doctor said my presentation was wrong. Mast cell patients crash - not sure what that means. Maybe more like a bad allergic reaction?

I am so happy you have an immunologist who knows the disorder. There is also an autoimmune-related MCAD. Maybe that is what he thinks you could have.

Treatment is effective.

Hoping the best for you.

Xx k

[KayHimm in reply to KayHimm]

Pumpkin -

Have you noticed a difference on the Zyrtec? I meant my problems turned out to be autonomic dysfunction, not autoimmune dysfunction.

As you said, mast cell disease is systemic so symptoms can seem like lupus. It would be great if you could see a change in some symptoms.

XxK

[Pumpkin2009 in reply to KayHimm]

I am afraid to jinx anything, but it may seem to be helping a bit. I am trying to be cautiously optomistic as with lupus also, sometimes it is false change in what is going on in our bodies. I see that autonomic dysfunction shares a great many symptoms so it complicates everything. Thank you so much for replying. Always good to hear from you and your intelligent responses.

Healing hugs.

[KayHimm in reply to Pumpkin2009]

May it continue and hopefully be much improved. He can adjust medications too. 😘

[Pumpkin2009 in reply to KayHimm]

Have a great day!

Healing hugs.

[misty14]

Do hope the new treatment works pumpkin. I think you've got a really good consultant there. Sending lots of healing thoughtwaves. Xx

[Pumpkin2009]

Thank you so much. Hope you hear something soon.

Lots of healing hugs and hope.