NeuroTalk Support Groups - Another Newbie in Terrible Pain

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- - Another Newbie in Terrible Pain (https://www.neurotalk.org/peripheral-neuropathy/166304-newbie-terrible-pain.html)

Welcome to Neuro Talk. You will find lots of support here. I am so sorry for the pain that brought you to this site. However there are people who have these conditions, and they will help you to try and find another direction for help. I agree that PCP would be a good place to start. You have to invest the effort to find the physicians that can help. You mentioned you had a good Neruo. A pain specialist is also a source of help for the pain. Keep in touch here, and there will be more people to answer with suggestions. To be a mom, and have to deal with all that you are going through has to be difficult. I was not happy to hear that medicaid would not cover some of the medications you need. Your doctor can write a letter of appeal with medicaid, and that sometimes works. Don't let them tell you no, when it is your quality of life at stake. I too have medicaid, and have had to fight to get certain medications. Several appeals for one particular med. Your doctor and you writing the appeal letter can work. I hope that all of us here, can be supportive of you while you go for more help. I will keep you in my thoughts and prayers. Mrs.D is extremely knowledgeable about places to start with medicine and nutrition. I do wish you all the best. I am here to listen any time. ginnie

There have been some reports--

Thank you to everyone!

I'm in awe really of all the information and support you are giving me. Truly such a blessing, I believe!

The diagnosis of SS was after a lip biopsy...and the doctor that read my lip biopsy was one of the 'toughest doctors' at the University of Chicago to give a positive diagnosis for Sjogren's....at least that's what my Neuro told me. He said my Sjogren's diagnosis, in his mind, is 100%, not to mention the other terrible symptoms of constipation, dry mouth, and dry eyes that I've had for years.

The lesions are indeed what confuses me, and with all that we were doing when I saw my doctor, I am really surprised I didn't ask him what else could cause the lesions. Usually I'm very good at grilling my doctor on everything. Must have been the pain issue's and the begining of my bladder stuff that scared me so much.

Okay, so to understand what to do here, I guess I need to start one med at a time. Should it be the LDN since that seems to help pain? My Dr said the Cell Cept will take two months just to kick in. Ugh. Never ending it seems.

Also, I did see an excellent doctor on my Chiari, and he said NO to surgery for it....until I get the other symptoms I'm having under control. It's funny, well sort of anyway....I had seen two other surgeon's for the Chiari and both wanted to operate immediatly. I'd rather go with someone that is conservative in that area because once you have that painful surgery, there is no going back. :mad:

What do you all think of dietary changes? Do those make a big difference?

Thank you so much for any more information....you are all so wonderful. :)

Before starting a major dietary investigation, I'd keep a food journal for a couple of weeks. See if you find correlations between what you eat and how you feel. Some reactions are delayed next day or so...keep that in mind.

It may give you a direction to take.

One thing you must eliminate is MSG in all its forms, if possible.
This chemical is called an excitotoxin and inflames nerve receptors for pain.

mrsD,

Thank you for the heads up on MSG. So, are you saying I should eliminate all forms, even in canned foods and boxed foods? I'm wondering if MSG has any connection to the pain I'm feeling currently....I mean, when I think about it, I eat alot of chicken that has been marinated in those McCormick season packets. I have never paid attention to the ingrediants in those at all but you can bet I'm going to check into that now. I'm assuming that Sea Salt falls into the same category as table salt. I will have to look that one up.

I really don't mean to complain, however, it does look like all my habits have brought me to this place, and now need to be changed. Saving myself from all of this is worth it, that's for sure, yet I'm such a wimp. Ugh. :winky:

Sonya

MSG stimulates the NMDA pain receptors in the body.

It is insidious and hard to tolerate for some people.

Here is a video by Dr. Blaylock MD about it.
http://neurotalk.psychcentral.com/thread166327.html

http://en.wikipedia.org/wiki/Excitotoxicity

Almost all processed foods contain MSG or a variant of it.

And I agree it is difficult to avoid...but you may feel much better if you do.