NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › New member questions
- This topic has 3 replies, 3 voices, and was last updated 8 years, 3 months ago by Dr. Diana.
November 18, 2014 at 8:26 pm #746lsmason56Participant
I found this website watching you tube. I just want to tell my story and see if anyone can give me insight. I am 58 year old and have been ill for the past 50 years it seems with stuff. Sick with inner ear infections my whole life. I was around 30 a virus or autoimmune reaction left me without balance function of the vestibular system. I also have always had stomach problems. I had what was called spastic bowels and would have D to the point of malnutrition. Was put on stomach relaxers. I still have a spasm in my bowels that comes and goes. I have fibro and Osteo arthritis. The OA is in my neck and spine probably a genetic problem. My mother had OA. On last xrays I have lost the curvator of my spine and neck. I use to have a correct curvature but because I have spent years sleeping propped up with a pillow in a certain way to help avoid dizziness has deformed my spine and neck. I have pernicious anemia and had low b-12. I am sensitive to all medications smells sound light. The last medication I took acyclovir caused my face to become like on fire without any hives. I was told it was an allergic reaction or maybe the start of stevens johnson syndrome. Which really scared the heck out of me because that can cause blindness in it worst form and I get my balance visually now. I suffered migraines for 30 years and was told some of my messed up balance could be from that. I get a feeling of a band around my head and pressure. I can’t do any kind of exercise. I was sent years ago to an ENt that had knowledge of dysautonomia and synocopy. I was told I have a mitro valve prolaspe and some problem with blood pressure adjustment on tilt table. This was very much a problem when I was young and at a normal weight. As I have gotten heavier my blood pressure is better. More normal range and not as bad with change in position. I always feel a tightness in the back of my head. I can’t look straight up at all or look straight down for to long or get dizzy.When I walk I feel like I am being pushed forward. I had MrI where I was sitting down. I was told I had some cord ad spine involvement but on one laying down didn’t have cord spine involvement. Had mra that was normal. I had 2 miscarrages before my 1st child he was 6 weeks early and then with my second child I was on bed rest for 6 months because of trying to miscarriage. That was 30 years ago. Were going to sew up my cervix. I did my own genetic test for gluten intolerance through entro lab online. It says I have to gluten intolerance markers so I took it to my doctor to get celiac testing and that turned out I didn’t have high antibodies. I had a high AnA for a few years 1:1280 but was told Pernicious anemia can cause that. I have no doubt that I will probably end up dying without ever knowing if I had something treatable or not. I am mainly told I have an ear disease and that is all that is wrong with me. I still suffer stomach problems get D and throwing up a couple times a week. I seem to feel better after one of these d and throwing up things. On eye testing nothing like glaucoma now. Just a little bit of cateracts that has started. I do have a problem with my eyes focusing but am told it the ear thing. But as a child I had a lazy eye and when I was a teenage was prescribed glasses with extra prism in them. I was told my eyes don’t fuse. And the glasses helped to bring the image to my eyes instead of my eye muscle having to work to see the image. That is what I was told have no idea if it was true. This was a problem for me while working at an air plane manufacturing company. I inspected airplanes and had to look at hundreds of rivets. I would then get a problem where I felt like I was seeing out of my side vision more and it was terrible. Seeing the eye doctor was told it was some nuerological problem not visual. I don’t drink at all can’t tolerate any alcohol or coffee or spicy foods can’t eat spices like nutmeg or cloves. My face get flushed if I smell or eat a lot of things. One rhumetologist told me I have a thing called Css, Central Sensitivity Syndrome. Right now was sent for PT for gait training and help with pain in my shoulder and back that feels like my skin has turned sensitive. Like I can’t stand to even have a light feel of clothing touch it. What he wants me to do is get on a exercise bike there and ride it. I dropped the PT because that isn’t going to help me. I told him I want help with the pain in my shoulder and neck mainly. But all he wanted to focus on is that I have no muscle tissue in my legs. The reason is because I can’t exercise when my blood tries to pump through my head I get a pendulum start and then I can’t walk right and it doesn’t go away for a while. At one time an ear doctor told me that I might be having a problem where the ligments aren’t able to support the vestibular apparatus as to part of my balance problem. I have been told by a rhuemtologist I am hyper flexible but I don’t have joints slip out of place. One thing I have always wondered about. I was having a small amount of clear fluid coming out one ear few years back. I didn’t see my doctor while it coming out. I felt better though. It only lasted 3 or 4 days. I thought it was fluid the fluid like when they look in your ears and say there is fluid in your ears. My ears didn’t hurt when this was happening or anything. I thought maybe that was my answer to feeling better. I mentioned it when I saw him next visit. I was hoping maybe he thought it was fluid from the middle ear and put in tubes that maybe they needed draining but he said I didn’t have fluid in my middle ear. Never happened again. I looked it up when I got the internet and spinal fluid was mentioned. I just always thought it weird. Doctors hate seeing me. I have ask for other test like Lyme, MFRT, sticky blood ect. They say its just my ear disease.November 19, 2014 at 11:26 am #5111BarbaraParticipant
I think there will be a few on this forum who have suffered symptoms similar to yours. Sad that it’s been going on such a long time though.
One or two things spring to mind, the first being your migraines. This can be a sign of magnesium deficiency and can be easily remedied, have you seen Dr Diana’s video on Magnesium Deficiency ? It’s very enlightening
or you can read about it at:-
or one by Dr Mark Hyman:-
With reference to the fatigue, muscle weakness, pain, etc, this is another clue that you could be Magnesium deficient (I was grossly deficient, despite serum Magnesium tests coming back within normal range). To increase your magnesium, use Epsom Salt baths/foot-baths, as this is the best way, as your body will only absorb what it needs. You can buy (or make) Magnesium skin spray/cream if not and include more magnesium foods in your diet, I would keep away from the magnesium in oral supplement form though, especially if your suffer from diarrheoa.
The trouble with magnesium deficiency is that it raises intracranial pressure in your skull, this could be a cause of the clear fluid coming from your ear – if this had been cerebro-spinal fluid (CSF).
Just to mention, I’ve read that you must discuss taking Magnesium with your doctor first, if you have kidney or heart problems.
I wonder if one cause of our thick sticky blood, is our bodies attempt at lowering intracranial pressure by bailing out our body fluid – causing dehydration! Thick sticky blood can be a sign of dehydration, so make sure you take adequate amounts of salt daily, the daily recommended amount is 2-3 grams but we often benefit from more. In fact POTS patients are given salt tablets (6 grams springs to mind but don’t quote me!) to bring their blood volume back up to a more normal level, amongst other things.
P.S. Sorry to have to ask this but please could you break future posts into paragraphs, as many of us find it difficult to read solid blocks of textNovember 19, 2014 at 5:23 pm #5113lsmason56Participant
Thanks for your suggestions. I have tried magnesium but like you said bad for the D. I then tried taking it in liquid form with calcium and it didn’t give the D as much. I quite using any because I was afraid it would make this loose feeling with my muscles worse.
I can’t talk to my doctor about much. Having have a physical problem like the ear disease they just want to use it as a catch all for everything else. I am signed up with new insurance the coming new year. I won’t have to have a referral so maybe I can go to some other doctor who will listen.
I read others stories and surprised how some people are able to get tested. I’ve had tests here and there but it has taken years.
I will look at the magnesium video. The migraines are much less now in my older years and since I went through the change this year. But think some of the tightness and other problems is a migraine equivalent.
I would like to get a blood test for sticky blood haven’t had that checked either. I have all the symptoms of sticky blood but have not had a clot or stroke thank goodness. Would be nice if the doctor would look at all the symptoms connected with sticky blood and mine. I get so tired of them saying if I had this I would have all the most serious symptoms like a clot or stroke. Maybe they are right.
I eat low sodium for the most part. I have worried it would cause my ear problem to be worse. Causing fluid in the ear.
Sorry about the post and not breaking it up. It is hard to read that way. A lot of times if I see one like mine I won’t even try to read them. I should have been more considerate.November 24, 2014 at 12:56 pm #5117Dr. DianaKeymaster
HI Mason, This may be an obvious question, but did you rule out high intracranial pressure as a cause of your headaches? Diamox can help you figure that out. 😉
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