Mast Cell Disorders Forum - Monty Python and the Black Knight and Me

05/16/24 at 17:26:30

	Welcome, Guest. Please Login
	Signup for free on our forum and benefit from new features!

Home

Help

Mast Cell Disorders Forum › Welcome! › Introduce Yourself/Share Your Story › Monty Python and the Black Knight and Me

‹ Previous Topic | Next Topic ›

Pages: 1

Monty Python and the Black Knight and Me (Read 3119 times)

daowebe

Tutor

Offline

I Love YaBB 2!
Posts: 34

Monty Python and the Black Knight and Me
09/14/11 at 16:27:48

My story sound the same as many others. 5 years ago I became very sick. My GP, God bless her, is a very caring and compassionate person but didn't know why I was getting progressively sicker by the day. She sent me on to specialists and by the time I hit the gastrointestinal guy my family was attending every visit with me. While at the gastrointestinal doctors I had a sever flushing attack and nearly passed out. He told my family that he thought I had a carcinoid tumor and due to my dehydration he wanted to admit me immediately. Even though that was not the correct diagnosis, he probably saved my life. It had been 3 days since I could keep even water down. After 10 days in the hospital the only results that indicated anything were very high IgE and serum tryptase. They started treating me for allergies and once I could keep food down for at least an hour, they sent me home.

My GP had me follow up with an Oncologist that had reviewed my results and suggested that I might have Masto. He referred me to a specialists in immunology, who said that if I had masto my tryptase level would be over 300. Then off for allergy testing where I found out I suddenly had allergies to foods that I had been consuming all my life. I didn't really know what to do but I just kept adding different H blockers and dealt with the symptoms as they arose. Since then I've had a string of issues that have included the ER and a few over nights.

I was also having other problems with blanking out (partial onset seizures) and migraines. Every time I got on a migraine or seizure med I would eventually end up having reactions to it or it would stop working. After a walking EEG and getting on a new medication I felt we had tackled the issue and I was functional. Then it started again.... I knew that some people get shots so they're not allergic to something anymore so I decided to give the medical world another shot. I went to an allergist who looked at me unbelieving when I told him about my allergy history. He ran a few tests and when I came back he told me I needed to see the Oncologist again. Off to the Oncologist who didn't seem to understand why I was there but he did set me up with an Immunologist. After waiting 4 months for my appointment, I was diagnosed with systemic mastocytosis using the test results from 5 years ago and the symptoms that I was presenting at the time of the appointment.

Although I now take over $3,000 a month in medication I feel much more confident that I am on the road to a better quality of life and I have the correct diagnoses. The best thing about my visit was what the Dr said to me. “Don't give up on me.” she said. “We've learned a lot about SM since you were last seen and we now have medications that will help you. We will keep addressing your symptoms until you can feel better.” She gave me her card and told me to call anytime if I had questions or issues. For the first time in 5 years I felt like there was hope.

So, Monty Python and the Black Knight - That's what I feel it's like to have systemic mastocytosis. The achy bones and cramping muscles are dulled with medication so I can handle it. The anxiety comes and goes with the flushing but additional medications helps. The stomach aches, diarrhea, queasiness, and vomiting are also managed to a tolerable level with other medications. The rashes come and go and adding more medication makes most of it go away. I don't really like to be touched and sometimes it feels like sand paper on a sunburn but more medication helps that. The sun gives me a horrible rash even with the 100 uv protection but I've learned to work in my garden as the sun goes down as long as it's not too hot out side. Sometimes I can't think straight and sometimes my vision is blurred. More medication controls the seizures and migraines. I may be dying a death of a thousand paper cuts but it's still just a flesh wound.
Wink

IP Logged

Joan

FORUM ADVISOR

Offline

Posts: 1502
Colorado

Re: Monty Python and the Black Knight and Me
Reply #1 - 09/14/11 at 20:02:21

Hi Daowebe!

Welcome to the forum! Sounds like you've been running a marathon through doctor's offices. It took me 16 years to be diagnosed, also SM, so glad you've found out sooner.

Have you been to see a mast cell specialist? Getting the right combo of meds isn't as easy as one would think, and it sounds as though your symptoms might be better controlled, as you still have a lot of them. If you want to post your meds list and dosages, etc., people on here will give advice and comment about what might be tweaked or added.

If you haven't seen the low histamine diet yet, it's been a great help for many of us. It's improved my daily life a lot.

Everyone is very supportive here, and we all care.

« Last Edit: 09/15/11 at 12:05:59 by Joan »

Joan

IP Logged

Ardyth Rookie Offline I Love YaBB 2! Posts: 7	Re: Monty Python and the Black Knight and Me Reply #2 - 09/15/11 at 06:14:18 Just to let you know i read your post and feel for you. I'm a newbie myself, still looking for a diagnosis. Ardyth
Back to top	IP Logged

Lisa

FORUM MODERATOR/ADVISOR

Offline

I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil

Re: Monty Python and the Black Knight and Me
Reply #3 - 09/15/11 at 12:21:59

Hi Daowebe! Welcome!!

It sounds to me like you've really gotten a lot of answers, and that's really great! It sounds like you're a real warrier and have been doing lots of study on top of it!! Keep up the hard work, because obviously it's paying off!!

It also sounds like you have some wonderful doctors there helping you. Would you mind sharing who they are and where you live because there might be another member here who may live near you who is hunting for a good doctor too.

Thanks!

Lisa

Don´t forget, there is so much more to life than being sick!

IP Logged

peter Mentor Offline I Love YaBB 2! Posts: 294	Re: Monty Python and the Black Knight and Me Reply #4 - 09/15/11 at 12:49:40 Ha Daow these are the words of a true WITE NIGHT the cutts will heal and you WILL win peter
Back to top	IP Logged

daowebe

Tutor

Offline

I Love YaBB 2!
Posts: 34

Re: Monty Python and the Black Knight and Me
Reply #5 - 09/15/11 at 15:34:18

Thank you all for such kind words! I am currently on:

Allergy stuff:
Hydroxyzine HCL 50 mg every 4 hours
Allegra 180 mg 2 times a day
Pepcid 10 mg 2 times a day
Gastrochrome 2 vials 4 times a day
Benadryl if sudden symptoms occur
Venotlin inhaler as needed if sudden symptoms occur
Epi pen as needed - only used this once in the past 2 years but had it out of the canister a number of times while I waited to see if the sudden symptom stuff would work. My doctor told me that I should take it anyway because it doesn't last long and should tied me over until the other stuff kicks in. I avoid it because I don't want to go to the ER. (probably dumb)

Seizure stuff:
Vimpat 300 mg
Amitriptyline 50 mg
Had one other but began reacting to it. I think I need more but we are upping my allergy stuff first to try to quell some of the masto flares before adding more. Most seizure medications have allergic risks so this has been a tough area. The only way to tell if a medication is going to work is to try it and it takes a while to build up an effective level.

Other stuff:
Lorazepam .5 mg as needed - anxiety
Ondansetron ODT 4 mg as needed – vomiting
Zomig 5-10 mg as needed – migraines
Tramadol – 50-100 mg as needed – pain
I try not to have to use these but I am very glad I have them available when I need them.

100 spf full spectrum block – sun protection
I get a bad rash from the sun. This helps but it does not stop it completely. It does allow me to be outside for longer without overwhelming consequences as long as I don't get too hot. I don't seem to get the rash on my face as much as my chest and arms. I have even gotten the rash through the car window on a long trip.

Things that hit me hard and always:
Milk protein – this can send me to the ER but I have gotten good at avoiding it.
Medications – almost all pain medication, many seizure meds, some over the counter stuff.
Hard shellfish – clams = visit to the ER but I have been successfully avoiding this too
Alcohol – Wine especially makes me flush and sometimes has made me feel like my chest is being crushed. I'm not sure why but every once and a while I'll try some again. (again, probably stupid)
Heat – I love hot showers but I come out with welts, looking like I was trying to rip my skin off instead of washing. In the summer I will sometimes feel really sick if I am in the heat to long. I try to listen to my body and go back to my room where there is an AC unit when I first start feeling ill. I don't always think I'm that hot but my body seems unable to deal some days.
Exertion – I can walk a 10 miles but one dance makes it hard for me to breath and I sometime start flushing. As long as I pace myself I can do anything but it seems if my heart rate is elevated it sets me off. I built a patio, including digging out a 40 x 20 area by myself. I had to work like a lazy man but I refuse to give up! My heart is fine so I just keep working at a pace my body will deal with.

Stuff that is not controlled that I think there might be a solution for:
Blurry/Double vision – looking for some ideas for eye drops to try??
Insomnia – I think this might be seizure related but who knows.
Seizure activity – working on this now but it's been really hard. One of the medications I tried made my brain swell and one side of my face was a little droopy for about 6 months. A lot of them don't seem to work and I have developed reactions to everything I've been on that has.

Stuff I really miss:
Being drug free
Spending the whole day working in the garden
Cheese and a good bottle of wine
Being able to go out to eat without fear
Having the energy to do something after work
Use my vacation time for vacation!

Stuff I'm really grateful for:
My family
The doctors that believed me and didn't think I was psychosomatic
All the information on the web. I know I would be dead by now if it wasn't there.
Thank God most allergy stuff is over the counter.
Finding a website where I could ask questions without risking my personal information would end up in the hands of my employer

IP Logged

Jennifer R.

Tutor

Offline

I am not a mushroom!
Posts: 30
McAlester, OK

Re: Monty Python and the Black Knight and Me
Reply #6 - 12/02/11 at 06:08:40

Heh, Had to read your post just because of the Black Knight reference.

I just wanted to say about the Epipen comment. Take it! I was told when I was younger by my allergist office staff not to take it unless I'm having to go to the ER. I could have saved myself so much trouble if I had known that it is there to KEEP YOU from going to the ER. I learned this after getting married to an RN and all the nurses I've talked to since have confirmed this. So now my only hesitancy in taking it is that I hate needles. So I go running to my husband who's favorite saying is that it never hurts HIM to give me a shot, he wont feel a THING. LOL And from experience I can say that the Epipen is short acting, but perfect for the 20 min's it takes for benadryl to stop my reaction.

IP Logged

Pages: 1

‹ Previous Topic | Next Topic ›

« Home

‹ Board

Top of this page