United Brachial Plexus Network, Inc.

Hi all,
My name is Cliff and I’ll be 49 years old in September. I’ve only just discovered this site within the past week or so. I have an obpi that has left me with limited use of my short left arm. As you may have noticed I’ve been responding to some of the messages on the board. I hope those responses have been helpful. I haven’t seen any messages that ask this question so here it is. Has anyone with bpi found that they get clots inside the mouth? I get them near where the teeth touch the walls of the mouth, under the tongue, and on the roof of the mouth. I’ve noticed that they appear suddenly and painfully when I eat salty things or drink soda, and I’ve been getting them for as long as I can remember. Is this a symptom of bpi or something else? I’ve also noticed for many years that if I use rice in my stews for several days in a row, the first skin layer on the walls of my mouth begins to peal off and clots form. Are you familiar with these symptoms and if so can you tell me what they mean?
On another matter, I’ve created a yahoo group that is definitely worth a visit. There are a lot of links there that should prove useful to you. In addition, the message board there is dedicated to the subject of dealing with, what I call, the “actual disability” that is the damage done to our ability to meet our living needs, what the causes are, and how we might be able to correct the trouble. If you are interested in viewing the messages and/or links at my group you will have to create for yourself a “free” yahoo e-mail address and then join my group. Once you have a yahoo e-mail address simply click on yahoo’s groups feature and that will bring you to the group search screen. There you can search for my group ERBSBPP by any of the following key words. Erb’s brachial plexus palsy. My group is completely free and there is no obligation to post messages, but you are more than welcome to post messages there if you want to. If you have a yahoo e-mail address already simply click on this link and then join my group. http://groups.yahoo.com/group/ERBSBPP
Remember, it’s very easy to discontinue your membership if you wish and it’s completely free. I hope you find the subject matter of my group interesting and the links useful.

hi Cliff - I get blisters in my mouth from certain foods - salty and acidic foods. My eldest daughter gets itching, blisters and tongue and lip swelling.

When I took Maia to an allergist for her stuff I asked the doc about this and he said that there are two issues involved... one is pure food allergy and the other is just that with some people certain foods cause mouth reactions - it's not an allergy but it will just cause a reaction in the mouth but not a systemic reaction.

Have you gone to a doctor about this? maybe even ask your dentist....

-francine

Cliff:

I agree with Francine about going to the dentist or doctor. They have so many types of mouth wash or medicine to put on sores. I also get sores in my mouth from eating certain types of food (chips, hard candy etc) but I don't think that has anything to do with my Erb's. That is from my liking the wrong kind of food. *lol*

Take care,
Deanna

Sometimes these sores and skin peeling in the mouth can be caused by certain medications...check the patient insert information leaflet in the packaging of any medication that you are on. Long term use of many pain killers can cause this...as I found out.

Also, look at what you are eating...spicy and very hot food and particularly v. hot coffee or tea can break down the top layers of mouth skin over time and prevent it healing; this could then let in bacteria which could worsen the problem.

Cliff

I also get sores in my mouth or it peels when I eat certain foods. Honeydew, peppers, eggplant, spicy foods of any sort, vinegar chips, cloves on any foods, sometimes it happens from foods I would not expect but I think it is just an allergic reaction not Erb's.

When I went to the dentist he was using gloves and my mouth kept getting sore and finally we realized it was latex because I had a wheezing attack.

I figured it was just me or lots of people have allergic reactions to some foods. I never had clots but my mouth peels a lot ... from foods

Kath