Mast Cell Activation Syndrome? Severe 'functional' neurological symptoms

lizbeth1990

Hi everyone.

It's hard for me to know what to write here without the floodgates opening so i'll try and keep it brief.

I've been having horrible neurological symptoms for a very long time, but had been misdiagnosed and just left to exist. I have been extremely isolated.  I have finally got into the medical system with the help of a friend who i owe the world to right now. I haven't got a proper diagnosis yet, but I know that almost all of my sypmtoms are caused by eating, drinking -- basically ingesting anything including medications. I suspect Mast Cell Activation Syndrome (immunological condition that can cause brain inflammation and multiple organ damage) caused by untreated coeliac disease. I am now finally waiting to see an MCAS specialist.

I am havinga ll kinds of tests now, have also had brain and spine MRIs and they found a syrinx (cyst that forms in spinal cord) that may be accounting for some symptoms, but i have noticed that all my symptoms starts to go away when i fast. Obviously that is not a long term solution so I just have to try and eat the foods that cause the least sypmtoms. This is easier said than done and there's a lot going on that i still don't understand.

I have extreme cognitive impairment most of the time, communication problems, brain fog, vision problems, mood swings, impulse control problems, balance and walking problems, numbness, impaired senses, neck spasms, etc etc. I really can't do anything most of the time and just have to keep watching my sypmtoms start to fade between eating, before having to eat again and bringing them all back. It's been so long since i've felt anything like myself. INtereacting with the very few people that I do is so, so hard.

Hopefully it's safe to say this here: I aslo have ASC/aspergers traits and they seem exaggerated the worst my neuro symptoms are. So i'm sorry if this is long winded - trying my best.

Ross_Alumni

Hello @lizbeth1990

Welcome to the community and thanks for introducing yourself.

I am sorry to hear of the challenges you have faced with the misdiagnosis and feeling isolated, it certainly appears as though it has been a long road for you of just trying to get some answers. 

Your friend sounds superb and I'm glad they were able to help you, it must be such a relief that you are finally getting some support and are on your way to a diagnosis of some kind. Do ensure you keep us updated with your progress.

Have you considered seeking support with daily tasks? You could speak with your GP or health professional to see if they have any suggestions about avenues you could go down, if you are finding a lot of things challenging to do on a daily basis.

lizbeth1990

Thank you very much Ross.

It has been a long road.  It has been traumatic for a lot of reasons, feeling invisible, little real help from family despite good intentions and feeling like I had to fight doctors for help when i am completely out of it. I realised that I didn't really have a voice at all and had no idea why people could not see how bad things were. Biases are of course everywhere, so definitely exist in the medical profession, especially when doctors are doing such a hard job in near impossible circumstances. I look forward to when I have the ability to work through all that and start to live my life.

Thank you - they really are one of a kind - and I know I will do all I can for them as soon as I can.

I will definitely consider trying to get help from local services. It is easy how so much becomes normal especially when there's no one to really point out any decline. But I have hope and am now able to look to the future for the most part.

Liz

chiarieds

Hi @lizbeth1990 - welcome to the community & thank you for sharing your medical problems. I'm sorry you don't have a diagnosis as yet tho you're suspecting MCAS, which can affect several of the body's organs (but doesn't necessarily cause damage, nor brain inflammation). I wonder if you have hypermobile joints at all? An association has been found between the hypermobile type of Ehlers-Danlos Syndrome (which myself, & family have), or Hypermobility Spectrum Disorder, & MCAS, so mentioning this just in case, as understanding about some aspects of MCAS is in it's infancy.

My son additionally has a syrinx, & eldest grandchild has coeliac disease. Myself & son may have MCAS, but we haven't sought a diagnosis for this as it's been enough of a fight getting the diagnosis of Ehlers-Danlos Syndrome associated with a neurological problem, so I do understand some of the difficulties you've faced.

Dr Anne Maitland, who herself has MCAS, gives really good lectures about MCAS. You may be interested in listening to one. Please see: https://www.youtube.com/watch?v=LddITjni4G0

Tori_Scope

If you're thinking of accessing some local support your GP is a good place to start, as Ross suggested @lizbeth1990. You can also refer yourself for a needs assessment through your local council, which could enable you to get the right level of support. You can do this by putting your postcode into this gov.uk page and following the instructions on your local authority's website.

How are you feeling today? Are you up to anything this weekend? 

lizbeth1990

Thank you very much for your helpful replies everyone. I will reply as soon as I can.

lizbeth1990

chiarieds: Thanks very much for these suggestions.  No, I don't have hypermobile joints, but I know that there is known to be a potential link between autism and diseases such as EDS, MCAS and several others. Thanks very much for the video - i think i did start watching that video before, will definitely watch it when I can.

Tori: Thank you. I will do that if possible. It's a bit complicated at the moment. I was in Suffolk.

I'm just zoned out all the time and not really able to move or anything. I can type ok here about this stuff, but in reality i can't actually carry much out. I'm trying to stay with my brother for a short while for a few days  soon if I can travel there because in many ways it's easier for me to manage the condition more if I'm not alone with my thoughts constantly and can achieve something, think about other people.

This isn't related to anything anyone's said here, but I just wanted to emphasise to everyone in case anyone gets me wrong!

I never set out to push one specific diagnosis, or become a kind of hack health investigator. I just very strongly suspect MCAS now, and in my specific circumstances I have experienced what happened if I leave things completely up to medical professionals. They all set out to help people get better I'm sure but in reality I felt it was more about other things. There's also very little knowledge about MCAS in general as chiarieds mentioned so it's not something they tend to consider. It could obviously still be something else or a few things, all that's important to me is that they listen to my account and don't just skew what i say to fit a diagnosis that doesn't make sense to me as the person dealing with it.

All I know for sure is that my symptoms are connected with the food I eat. When I eat anything at all I get a lot of anaphylaptic symptoms, plus all the other stuff.

It's been hard enough trying to get any physical treatment at all after having my initial interaction with mental health services on my health records that started in 2006 (when I was 16). No joke.

Anyway, thank you everyone for not preventing me having a little rant, even though I probably offloaded far more than I should on a public forum!! I just console myself that being so raw about things can really help other people who might even be going through something a bit similiar.

Thanks again. I will keep trying to do all I can and i'm sure there'll be progress soon enough.  I do have several appointments lined up for this year, one next month.

Take care everyone.

Tori_Scope

You're more than welcome to get things off your chest here any time you need @lizbeth1990 And you're right that this can help other people to feel less alone, too. 

I hope that you're able to stay with your brother soon. It makes sense that it'd be easier not to be alone with your thoughts all the time. Do you think he'd be happy for you to stay? Are you facing any particular barriers with travelling there? 

Fingers crossed the upcoming appointments go well. Please do keep us updated with how you're getting on!

Schanios

@lizbeth1990 HI there, I haven't been online in a while and came across your post. It looks like we are very much in the same position, how're you doing now? I ended up getting a wheelchair in October last year because my nervous issues had become so bad I 'didn't trust my legs' anymore. I finally bit the bullet and went to see a specialist in MCAS privately in August, I've been introducing drugs slowly, and I am feeling so much better. My brain-fog has almost cleared, my imbalance issues have pretty much gone, my migraines are a lot less frequent, and the tingling, numbness, and sparking pains in my arms and legs have massively improved. There's also a wonder drug, which has me sleeping at night time which is a  first in recent years! 
Happy to chat whenever you'd like, just thought id check in, say hi, but also let you know there is hope, there are people who believe you, and there are things that can help xx