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HELP- I am new... need some advice
Hey there, guys. I posted some questions earlier- but wanted to post again. This seems like a really neat place to talk about all these weird things! I have had many of my doctors tell me that I MAY have MS. No diagnosis yet and I need some answers.
I have been having some major problems for some time now. About 2 years ago- I got really sick with Mono, tonsilitis, and strep. When I was finally able to drive myself to the doc- he wanted me to go into the hospital, but I had my little boy and couldn't. He did much blood work and found EBV. Prior to that I have had 10 surgeries on everything you can imagine. All female parts- 2 bladder and kidney surgeries, etc. Since then I have had numbness and tingeling in my hands and feet. Feelings of confusion, partial paralysis of LT leg, burning sensations, itching really bad and horrible dizzy spells. Not to mention the problems with sleeping, IBS, interstitial cystitis, Fybromialgia--- geeezzz I could go on and on. I am 29- my doctor has me out of work for a year now. I need my life back and I need to know what is wrong.
I did take matters into my own hands and went to Florida to the Mayo Clinic and the Neurologist there found that I am not absorbing B-12, vitamin D, and a few others. She diagnosed me with being AUTOIMMUNE DIFICIENT and BRAIN STEM DISFUNCTION. She said she didn't feel comfortable with diagnosing me with MS at this point because I had a normal MRI and my spinal tap showed only elevated levels of fluid pressure.
DOES ANYONE HAVE ANY ADVICE ON WHAT I SHOULD DO NOW?????? I really have to get someting going here and I feel like I am at a stand- still. Things are getting worse and there is no help at the moment. PLEASE SEND ME YOUR ADVICE. Thank you very much and I am sorry this is so long.
Peace to you- Nay
I have been having some major problems for some time now. About 2 years ago- I got really sick with Mono, tonsilitis, and strep. When I was finally able to drive myself to the doc- he wanted me to go into the hospital, but I had my little boy and couldn't. He did much blood work and found EBV. Prior to that I have had 10 surgeries on everything you can imagine. All female parts- 2 bladder and kidney surgeries, etc. Since then I have had numbness and tingeling in my hands and feet. Feelings of confusion, partial paralysis of LT leg, burning sensations, itching really bad and horrible dizzy spells. Not to mention the problems with sleeping, IBS, interstitial cystitis, Fybromialgia--- geeezzz I could go on and on. I am 29- my doctor has me out of work for a year now. I need my life back and I need to know what is wrong.
I did take matters into my own hands and went to Florida to the Mayo Clinic and the Neurologist there found that I am not absorbing B-12, vitamin D, and a few others. She diagnosed me with being AUTOIMMUNE DIFICIENT and BRAIN STEM DISFUNCTION. She said she didn't feel comfortable with diagnosing me with MS at this point because I had a normal MRI and my spinal tap showed only elevated levels of fluid pressure.
DOES ANYONE HAVE ANY ADVICE ON WHAT I SHOULD DO NOW?????? I really have to get someting going here and I feel like I am at a stand- still. Things are getting worse and there is no help at the moment. PLEASE SEND ME YOUR ADVICE. Thank you very much and I am sorry this is so long.
Peace to you- Nay
Hey there, Sally- I was just wondering where is the best place to find info on Gluten free diets? I have looked online a bit, and have found some info- but I need more on what I can and can't eat!
Thanks for the advice! Have a good one!
Peace- Nay
Thanks for the advice! Have a good one!
Peace- Nay
Thanks so much. I will certainly try it. I can do it! I have been tested for Celiac and it was negative. I have to go back to him after I do this copper serum- (if I can ever remember to pee in the dog-gone jug!) I will ask him about Celiac again.
I honestly am so glad I came here. I have gotten so many ideas and it makes me feel like I am doing something!
Thanks again. I am still on my search for a good doc here and hopefully soon I will find one.
Peace to all- Nay
I honestly am so glad I came here. I have gotten so many ideas and it makes me feel like I am doing something!
Thanks again. I am still on my search for a good doc here and hopefully soon I will find one.
Peace to all- Nay
Hi Nay Nay,
Welcome. Don't give up. Another possible direction: with the Tummy problems and B12 absorption issues, have you been checked for celiac. This can cause IBS symptoms (IBS is NOT a diagnosis, it just means "I'm Bloo#* Stupid" - referring to a dr who can't work out the problem) and B12 and other absorption issues.
You have two choices. 1. Get tested for celiac. You may or may not have it. There is a high rate of false negative for this test (this means you have it, but the test says you don't), though if it is positive you are sure you have it.
2. Try a gluten free diet. This should be tried even if you test negative for celiac, given your history. This is important becuase of the high rate of false negative result from testing. Gluten free diet means nothing made from or having ingredients from wheat, barley, rye and Oats. It is difficult and means you have to check all ingredients, but doable and may help your symptoms. Focus your diet on basic foods, meats, fruits, veges, rather than processed foods and it is possible. Gluten is hidden in things like soy sauce, thickener for many products. I recommend trying the diet without cheating for at least 1 month.
Celiac is also associated with a lot of other autoimmune conditions like thryoid, and MS, among others.... another reason to give it a try....
I am not diagnosed with MS, though it is still on the books as a possibility.
I have hypothyroid and allergies. I was diagnosed with IBS and reflux/hyperacidity.
Drugs weren't helping. I tried gluten free and it really was like a miracle. The tummy issues, which had such a big impact on quality of life, nearly disappeared, and the improvement was pretty much overnight.
It may not work for you, but it is a thought! And you still need to pursue all the other avenues..
Just an idea.
Sally
Welcome. Don't give up. Another possible direction: with the Tummy problems and B12 absorption issues, have you been checked for celiac. This can cause IBS symptoms (IBS is NOT a diagnosis, it just means "I'm Bloo#* Stupid" - referring to a dr who can't work out the problem) and B12 and other absorption issues.
You have two choices. 1. Get tested for celiac. You may or may not have it. There is a high rate of false negative for this test (this means you have it, but the test says you don't), though if it is positive you are sure you have it.
2. Try a gluten free diet. This should be tried even if you test negative for celiac, given your history. This is important becuase of the high rate of false negative result from testing. Gluten free diet means nothing made from or having ingredients from wheat, barley, rye and Oats. It is difficult and means you have to check all ingredients, but doable and may help your symptoms. Focus your diet on basic foods, meats, fruits, veges, rather than processed foods and it is possible. Gluten is hidden in things like soy sauce, thickener for many products. I recommend trying the diet without cheating for at least 1 month.
Celiac is also associated with a lot of other autoimmune conditions like thryoid, and MS, among others.... another reason to give it a try....
I am not diagnosed with MS, though it is still on the books as a possibility.
I have hypothyroid and allergies. I was diagnosed with IBS and reflux/hyperacidity.
Drugs weren't helping. I tried gluten free and it really was like a miracle. The tummy issues, which had such a big impact on quality of life, nearly disappeared, and the improvement was pretty much overnight.
It may not work for you, but it is a thought! And you still need to pursue all the other avenues..
Just an idea.
Sally
Just wanted to say I'm glad you brought your post over here. As you can see, there are a LOT of people with a lot of good experience and knowledge. I knew you'd find help here. You seem to be fitting right in!
Penn
Penn
I have read a little about the spinal fluid (psuedo tumor cerebri) but not too much was found on it. I have gained some weight, but not much. I have always been underweight until now- but I couldn't believe what he was telling me! I had to quit him--- he was a QUACK! He told me it was over 200????? Not real sure about all that, though.
Thanks so much. I do appreciate it and just as soon as I can find a good doctor here in ALABAMA I think I will do a lot better!
Peace always- Davin
Thanks so much. I do appreciate it and just as soon as I can find a good doctor here in ALABAMA I think I will do a lot better!
Peace always- Davin
Hi, and welcome!
You did say that your spinal fluid pressure is high, correct? There are problems other than being overweight that can cause elevated spinal pressure. Therefore you definitely need the MRIs with and without contrast of your head and spine. High CSF pressure can be serious and cause many symptoms similar to MS. But it can cause different symptoms as well; and it can actually damage our nervous system over time if the pressure is high enough. We can have structural problems blocking our CSF flow as well as other reasons for its elevation.
I am not trying to scare you. It may only be borderline or be an erratic reading. I do not know what it was. Nor do I know why your doctor was stating that you have brain stem dysfunction. Do NOT allow your doctor to brush you aside without answering your questions.
Hope you get the answers you need soon.
You did say that your spinal fluid pressure is high, correct? There are problems other than being overweight that can cause elevated spinal pressure. Therefore you definitely need the MRIs with and without contrast of your head and spine. High CSF pressure can be serious and cause many symptoms similar to MS. But it can cause different symptoms as well; and it can actually damage our nervous system over time if the pressure is high enough. We can have structural problems blocking our CSF flow as well as other reasons for its elevation.
I am not trying to scare you. It may only be borderline or be an erratic reading. I do not know what it was. Nor do I know why your doctor was stating that you have brain stem dysfunction. Do NOT allow your doctor to brush you aside without answering your questions.
Hope you get the answers you need soon.
Thanks for the input. I got nothing whenever I had my tap... and I can take some pain, but- it hurt! So what are they telling you to do in the mean time? Just wait and see what happens??????
That is basically what they have sent me off with! I am frustrated about the whole thing. I have seen every kind of Dr. there is to see. They have diagnosed me with everything under the sun. I have had 12 surgeries for all sorts of things. I have managed to work and raise a family except for the past year- I haven't worked. Dr. took me off work and then I lost my job! CRAZY- I am tired of all of this. I need to find a Neurologist!
Thanks again and any advice you can give me will help!
Peace- Nay
That is basically what they have sent me off with! I am frustrated about the whole thing. I have seen every kind of Dr. there is to see. They have diagnosed me with everything under the sun. I have had 12 surgeries for all sorts of things. I have managed to work and raise a family except for the past year- I haven't worked. Dr. took me off work and then I lost my job! CRAZY- I am tired of all of this. I need to find a Neurologist!
Thanks again and any advice you can give me will help!
Peace- Nay
I kind of know what you are going through.. I too am probable MS but they can't say for sure. I had a couple of MRI, but the lesions were not in the area? I havn't had the spinal MRI yet. I've had a spinal, the Dr gave me Valium (I think) a few minutes before, I think the worrying about it is worst then the procedure. It did hurt, but nothing to what I thought it would be..the freezing is the hard part. But if you have a good Dr it shouldn't be that bad....mine came back NEG..?? I also had a Bone Marrow thingy...that is worst then the spinal...good luck with everything and hang in there. I know it's hard waiting...I've waited about 5 years now..they won't give me any meds other then Celebrex and Tyn3...
I had the MRI with contrast on my brain. I have had a few the past couple of years. I haven't had one on my spine. I guess I should ask about that. I am looking for a neurologist here. I can't go to Fl everytime!
I had the spinal tap done Sept. of last year and I am not going to lie- it hurt. Ask for some sedation, because my doctor said I could have sedation but he didn't give it to me. The only thing he said about my fluid levels being so high was that I needed to loose weight. I have gained some weight since everything has gotten worse. They (of course) put me on prednisone for a while. The other doctors thought the high fluid levels were markers for something but never would really say what. The spinal tap lasted about 20 minutes I think- If I can remember right!
I have had the nerve tests and EEG's and all those things. Everything always comes back fine. It is just aggrivating- I certainly know something is really wrong and the doctors seem to blow it off if they can't find a quick cure!
I am sure you know what I am talking about!
I wish you luck and if I can help you with anything- I certainly will. Any more advice you can give me- I will take it and appreciate it!
Peace to you- Davin
I had the spinal tap done Sept. of last year and I am not going to lie- it hurt. Ask for some sedation, because my doctor said I could have sedation but he didn't give it to me. The only thing he said about my fluid levels being so high was that I needed to loose weight. I have gained some weight since everything has gotten worse. They (of course) put me on prednisone for a while. The other doctors thought the high fluid levels were markers for something but never would really say what. The spinal tap lasted about 20 minutes I think- If I can remember right!
I have had the nerve tests and EEG's and all those things. Everything always comes back fine. It is just aggrivating- I certainly know something is really wrong and the doctors seem to blow it off if they can't find a quick cure!
I am sure you know what I am talking about!
I wish you luck and if I can help you with anything- I certainly will. Any more advice you can give me- I will take it and appreciate it!
Peace to you- Davin
When you say that you had an MRI, did you have it for your brain, and entire spine? Was it with & without contrast? If not, request them. I think that they use contrast for new lesions and without is to diagnose old lesions, but these can be anywhere on your spinal cord or brain. Also the lesions don't always show up on MRIs. There are different machines that work at different levels. Find out what type of machine was used. What did the doctor say about the spinal tap levels being elevated, did he explain to you why that might be? I am in your shoes also, by the way. I have had 3 MRIs so far, and numerous tests. I am having the nerve conduction test later this month, then a possible spinal tap, but I am scared to do that. Did it hurt? How long did it take?
Yes- I did take the B-12 shots. I went to see my Gastro shortly after the Mayo Clinic so we could figure that out and so far, everything has come back normal. He wanted to test me for Chrones Disease, but all is well there.
These symptoms are still going on and now I am having really painful headahces along with everyting else.
I just need some advice as to what to do next. I need to know something. I have done everything all the doctors have wanted me to do- but I am still stuck and now even the doctors are at yet, another stand still.
These symptoms are still going on and now I am having really painful headahces along with everyting else.
I just need some advice as to what to do next. I need to know something. I have done everything all the doctors have wanted me to do- but I am still stuck and now even the doctors are at yet, another stand still.
Did you get vitamin B shots? Have you taken care of the vitamin issues and you still are having symptoms?
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