Update on me
 

Hi everyone,

I just thought I would update you all with what has been going on with me as I haven't been on for months and months - well it seems like that.

Also welcome to all the newbies and I hope that you are managing to get answers to your questions.

I have been very poorly and been in bed a lot of the time. Unfortunately it seems I have developed a new condition on top of all the other poo I have to deal with!

I have been suffering with constant nausea, vomiting and stomach pains for around a year. In June I was hospitalised as my abdomen swelled so much I looked like I was 9 months pregnant. Since then I have been pretty much on a daily diet of morphine and tramadol.

I saw a consultant surgeon in August and after actually listening to me ( the first Dr in a long time) he believes I have gastroparesis - paralysis of the stomach / stomach doesn't work properly. I am vomiting undigested food from meals I have eaten 9 hours earlier ( sorry to be graphic) I am rarely hungry and somedays I can't even process liquids.

The consultant I saw believes that the gastroparesis is another symptom of this undiagnosed neurological condition that I have. Symptoms include plummeting blood pressure, blood pooling, breathing problems, weakness, fatigue, facial weakness, swallowing problems , ptosis. Maybe this is a weird presentation of MG or a totally new neurological illness that I have. As this guy I have seen is a surgeon I wont be seeing him again as I dont need an operation. I am currently waiting to see the gastro team.

I have spent weeks in bed with nausea, vomiting and pain.

For some good news I have resolved the issue with my numb feet and hands I had low b12 serum levels - 178, the cut off is 180 in the UK and it has been a battle to get treatment. Within 5 days the numbness went from my feet , mentally I felt a lot clearer and I only get numb hands/ fingers about once a week now. I opted for tablets rather than injections as I had some injections recently and the site was painful for weeks afterwards. Having got much worse sickness wise its a battle to get the darn things down and stay down!

Im really sorry its been so long since I have been on but I really have been awful. I just hapen to be having a reasonable day where I am only facing the battle of not vomiting, not swelling and pain.

Has anyone else on here developed gastroparesis?

Thanks
Love
Rach:grouphug:

I just wanted to reach out to say that I am so sorry you have been suffering like this. Thank goodness there is a direction now and that a gasto team is going to see you. I certainly hope you get some relief soon!! debra

Rach :hug:,
I am so very sorry to hear about your additional medical problems. Hang in there. Hopefully help is on the way and the endless maze of issues will begin to clear up for you. I will continually keep you in my prayers.

Loving Hugs, :hug:
Shari

Hi Rach,

good to see you here again. Sorry you have been going through so much.

Its interesting to hear what you've been going through, and I'm glad you've been graphic. About 2 months ago I devoloped pain in my abdomen, nausea, vomiting and running to the loo. I stopped eating, so much in fact I lost 7.5kg, I went to hospital 4 times totalling 2 weeks. Had heaps of tests, they found a polyp in my gallbladder. My surgeon said that was probably what was causing all the problems. Before I found that out I was wondering about gastroparesis. I finnally got well(ish) and am just starting to feel ill again, Noooooo I don't want to have to deal with this again. I hope the gastro team can help out.
Thanks for sharing!!!!

Keep taking care
Kate

Hi Kate, Shari and Debra,

Thanks so much for your replies. Kate its weird as I had a lot of pain in my gall bladder area and still do but all blood tests and scans are negative. Its the vomiting undigested food which has been the big give away as to what the condition is and the longer I think about it the more I realise that Ive probably had this condition extremely mildly for many years.

When I used to suffer with migraines regularly (more than one a week from age 11-15) I would vomit undigested food and just think oh well the migraine has caused my stomach to shut down. And there have been a few more instances over the last 10 years. But they were so few and far between that I never put two and two together until now.

It looks like it runs in the family as my sister has it as well, but as she is having heart investigations at the moment - her heart pauses and goes too slow and too fast, looks like she will get a pacemaker in her early thirties, she hasn't chased up the gastroparesis side of things.

I know this condition is common in diabetics I just wondered if there was a higher than normal amount of people with MG that have it when compared to the rest of the population?

Thanks
Rach

Hi Kate
 

Sorry that this is starting up for you again. I hope it settles down quickly as its awful to deal with.

Rach xx

Hi Rach!!

I have been wondering alot about how you have been doing over the summer and was so glad to hear from you....but so sad to hear what you have been going through! 2010 has been an exceptionally tough year for you and I truly hope you find some relief soon.

Sue

Rach, I don't have time to respond right now, too much going on. I thought you'd find this story VERY interesting and maybe helpful.

http://abcnews.go.com/Health/ohio-gi...ry?id=11100570

http://today.msnbc.msn.com/id/304142...y-today_health

Take care of yourself.

Annie

Okay, I'm back. This woman had gastroparesis, they think from a virus, and they implanted a pacemaker to stimulate the nerves around the stomach. Can you remember if something set your symptoms into motion or if they have been there as long as you can remember?

I can't remember - have you ever had a sleep study? I am wondering about a central nervous system issue.

I wish I had an answer or more ideas for you. I can't stand that you don't know yet, at least for certain, what is going on. Is the Mestinon still working or is it only doing just so much?

I'm glad you at least have one doctor helping. You need more!

Are you taking the sublingual B12? That way, you don't have to "swallow" anything and it goes to work in the bloodstream right away. It can take MONTHS to recover from a deficiency, which you obviously had. And who knows how long you had it. I hope you will take higher doses of it (5 mg or more) and a few times a day.

hi Annie
 

Thanks so much for those sites I have had a look at them this morning and have emailed them onto friends and family as it explains it much better than I ever could.

I dont remember having a virus which triggered it off and having thought about it over the last few months I have realised that I have thrown up undigested food for many years. The first time I can remember was 1993, the second time I remember was in 2000 after my hen night - I was pretty drunk but we had started the evening with a chinese and that came up 10 hours later completely undigested - sorry for being graphic.

I have also suffered with migraines from age 11 and can remember when I had a migraine I would vomit but again during a migraine attack it would be undigested food.

So it has been going on for years but not enough to actually trigger something to say that something isn't right. Its only in the last year I have developed constant nausea and only in the last 6 months has this really developed into the vomitting of undigested food on a regular basis.

Despite requests to Drs to have a sleep study reuest this has been denied, as have requests to see a pulmanologist with a speciality in neuromuscular disorders. As many of you will be aware I have actually been dropped by my neurologist as their is nothing neurologically wrong with me in their oppinion. Funny that I have now manifested a neuro muscular disease.....alongside all my other crazy symptoms.

I dont really use Mestinon anymore, I only use it when my eye drops completely or my face drops or I have breathing issues. It resolves these problems in around 20 minutes. I probably take it once or twice a month now. I had to limit the mestinon as it makes my stomach pain so much worse as it stimulates the gut. Even if I take probanthine it still is excruitatingly painful.

Due to weakness caused by MG? or Lack of food my energy level / activity level has dropped significantly. I probably spend around 6 hours a day out of bed maximum. The rest of the time I am asleep or resting. So my need for mestinon has greatly reduced becuase of this.

I dont take sublingual B12 I am taking 50MCG of cyanocobalamin a day. I supposed to take them in the morning but I usually find my nausea is at its peak then, so I wait until it subsides and then take it. I dont think I am processing it as well as I was as my feet have started to go numb again in the last day or so and my hands are worse than normal. I didnt have the injections as I find them so painful - afterwards not during. I had two intra muscular injections back in May and the injection sites have only just stopped being sore.

I am hoping to get some better B12, however I am waiting for a blood test at the end of this 3 month course. I dont want to take any extra as I would like to see what has happened with my serum levels after this course and if I have absorbed enough through my stomach. As if the serum levels haven't incresed dramatically is further proof my stomach isn't working. A b12 deficiency tends to go hand in hand with gastroparesis. Hence why I want it to show up. Once and this may take time ...diagnosed then I will sort my self out with some heavy duty sublingual B12.

I think I am probably suffering from all sorts of deficiencies at the moment I have a crazy sore tongue, with a great big strawberry red patch on it, I think this means aneamia? So again its just more proof that Im a bit poorly lol.

Suev - thank you so much for your post. Fingers crossed 2011 is a better year for all of us.

Love
Rach:grouphug:

ps sorry about the spelling mistakes but Im loaded on morphine!!!

Can't remember rach - have you been tested for Celiac Disease? If so, how long ago was it? If you are on steroids, you may get a negative result even if you have it. You may want to try a gluten-free diet, if you aren't already on one. CD is quite common, and many researchers think that gluten sensitivity is even more common than CD.

Here's a link, if you're interested in more information:
http://neurotalk.psychcentral.com/post8767-2.html
Hope this helps!