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Hi My name is Debbie and I am not sure (yet) if I have MS-

Posted: Thu Sep 06, 2012 4:20 pm
by DebiW
20 yrs ago I went thru all the testing for MS and 1 doctor said I had it - another said I didn't - a third said I did. I left the city I lived in at the time and moved to one that had an MS Center the doctor there said I did not have MS. I was to say the least very frustrated so I decided that IF I had MS it would eventually become so apparent that it would be undeniable. Fast forward 20 yrs - Last yr I was very sick with multiple sinus infections, infected cysts and lymph nodes -during one visit to an ER they did a CT scan. I was told that I had a severe sinus infection and oh by the way you have a small basilar tip aneurysm and some brain atrophy. Since November I have had sinus surgery - surgery to remove an infected lymph gland - a MRSA infection - (all caused believe it or not, from a wheat allergy) anyway I was so sick that the other results on the CT scan were put on the back burner. I have been having these "spells" for lack of a better word where my arms ache suddenly and I loose the ability to control my arms (especially the right one) I can move them, but can't push down on a keyboard (very similar to having your entire arm go to sleep and being unable to use it). I mentioned this to my doctor who sent me to a Neurologist. I like this doctor - he spent 4 hours examining me then looked at the ct scan results and report. He ordered an MRI with and without contrast and an MRA (for the aneurysm) which I had last Saturday. All last week and this week I was having vision problems in my right eye (not a blind spot this time, more of a grey cloud) I have had Optic Neuritis 4 times. I made an appointment with my Opthomologist and saw him today. I have seen him for most of the last 20 yrs. I told him everything that was going on, including seeing the Neurologist and having the tests done. First thing out of his mouth was "Does he think it is an MS flare up?" We talked about the diagnosis 20 yrs ago (of which he was already aware of) and he did a field test. The field test in my right eye is so abnormal he had them repeat it. If you fried an egg and took a piece out of the right upper side and one out of the left upper side - that's what it looked like. He dilated my eyes and said he sees no active optic neuritis or anything else to cause the symptoms I was having. He does believe that it is an MS flare up and said they will probably do another spinal tap and wants to have the MRI results sent to him also and requested that my neurologist contact him. If it is MS it would explain a lot, if it isn't ???? I'm just wondering tho, if the diagnosis 20yrs ago was correct - could it just now be getting worse? Is there a form of MS that is that slow moving? Also when they did the allergy testing they also tested for Celiacs disease (which I do not have) but my allergist said the blood work done showed some abnormal results (they were to test my immunoglobulin or how well my immune system worked ) He said that my allergy to wheat kicked my immune system into overdrive - so I am wondering if that may have affected the (possible) MS? To quickly explain the wheat thing I have never been a bread or pasta eater until August when I got a bread machine for my birthday - went overboard baked 18 loaves of bread in a very short time and of course had to eat some to see how it turned out - the last time all I did was breathe the wheat flour while my granddaughter baked bread and ended up in intensive care. I am only bringing the wheat thing up because this all seemed to start around the same time as the issues with my arms etc. Is it possible that the allergy "kicking my immune system into overdrive" may have caused the MS to worsen?

Re: Hi My name is Debbie and I am not sure (yet) if I have M

Posted: Thu Sep 06, 2012 5:00 pm
by lyndacarol
Welcome to ThisIsMS, Debbie.

You seem to have a good medical team. Your symptoms COULD be MS or possibly something else. It is possible that your diagnosis 20 years ago was correct; MS often has periods of activity alternating with quiet periods. Optic neuritis is a common symptom of MS.

Although I have not found an expert who agrees with me, I suspect that excess insulin is involved in MS (it has already been linked to many other problems – high blood pressure, heart disease, obesity, diabetes, and even Alzheimer's); I encourage you to ask one of your physicians for a "fasting blood insulin test" (The optimum insulin test result is 3 UU/ML or lower.). The test has been available since about 1960; it is one of the least expensive blood tests. Anything that raises a person's blood sugar (like refined flour, sugar, white potatoes, white rice, etc. – even the mucus in a sinus infection) causes the insulin level to rise, too. A person can have a normal blood sugar level test AND the insulin level can still be high.

All the best to you.

Re: Hi My name is Debbie and I am not sure (yet) if I have M

Posted: Fri Sep 07, 2012 1:58 am
by DebiW
lyndacarol wrote:Welcome to ThisIsMS, Debbie.

You seem to have a good medical team. Your symptoms COULD be MS or possibly something else. It is possible that your diagnosis 20 years ago was correct; MS often has periods of activity alternating with quiet periods. Optic neuritis is a common symptom of MS.

Although I have not found an expert who agrees with me, I suspect that excess insulin is involved in MS (it has already been linked to many other problems – high blood pressure, heart disease, obesity, diabetes, and even Alzheimer's); I encourage you to ask one of your physicians for a "fasting blood insulin test" (The optimum insulin test result is 3 UU/ML or lower.). The test has been available since about 1960; it is one of the least expensive blood tests. Anything that raises a person's blood sugar (like refined flour, sugar, white potatoes, white rice, etc. – even the mucus in a sinus infection) causes the insulin level to rise, too. A person can have a normal blood sugar level test AND the insulin level can still be high.

All the best to you.
Thank you for answering! I have a fantastic medical team, especially Dr Sam my opthomologist - just love him. I haven't had a fasting blood sugar done in about 10 yrs or so and then I was told I had hypoglycemia. I am on a strict gluten free diet and while I do eat rice occasionally I rarely eat potatoes - no sugar - never really had a sweet tooth and don't even have any in my home. There is gluten in things you would never expect it to be in, so I pretty much stick to meat and veggies and nuts. I love veggies! I have yogurt and almonds and a banana for breakfast every morning and I cook all my own food (terrified of getting sick again from the wheat) so I'm not sure if the insulin is an issue, but I ask them to do the test. I have been wrong once or twice before :) I do know that in the past (when I was still eating flour) and I would go on the Atkins diet the difference in how I felt was amazing, more energy, brain seemed to work, didn't get that "I'm lost in a fog" feeling, etc so I am not ruling that out at all. I go back to the Neurologist on the 26th, so I should know then.

Re: Hi My name is Debbie and I am not sure (yet) if I have M

Posted: Fri Sep 07, 2012 4:22 am
by want2bike
When you mention the sinus issue could be a problem with dairy. Have you consider elimination of dairy? Do you have a lot of dental work? Dr. Glidden does a good job of expaining why glutin is bad. Not sure if you are taking a probiotic but a healthy gut is very important to our health. I do Kombucha tea everyday. If you cannot find out what your problem is might consider a holistic doctor.









http://www.livingpaleo.com/probioticsgo ... ia-part-2/


Re: Hi My name is Debbie and I am not sure (yet) if I have M

Posted: Fri Sep 07, 2012 8:51 am
by DebiW
My sinus issues are caused from the gluten allergy. My allergist calls it "Bakers Rhinitis", similar to Bakers Asthma only thru sinuses instead of lungs. Apparently what happened is that the gluten caused an allergic reaction (1st sinus infection) and since I was not aware of the problem, I kept eating it between August and Feb. of this year I was on 9 different antibiotics, had sinus surgery in November and according to the doctors this opened my sinuses and then my wonderful immune system went into action and I started getting cysts on my armpit - more antibiotics and then I sat and watched while my granddaughter made whole wheat doggie treats ( showed her how to measure a cup of flour and didn't touch anything else) there was a lot of flour dust flying around and the next morning I woke up having chest pains and with a 2" x 4" very infected cyst under my arm. I was admitted to intensive care, had surgery to remove cyst, lymph node and resulting MRSA infection. I have been gluten free since having the allergy testing and the difference in how I feel is amazing, no sinus problems, no more cysts. I have no problem with dairy or any other foods.

Re: Hi My name is Debbie and I am not sure (yet) if I have M

Posted: Fri Sep 07, 2012 8:54 am
by DebiW
Oh, also wanted to add that my doctor doesn't recommend an probiotic - he says as long as I am eating yogurt with active cultures I really don't need anything else. I tend to be one of those people that likes to let my body do the job it is intended to do - probably why I don't get flu shots (don't get the flu either). One of the girls I work with sees a holistic physician and is setting up an appointment for me.