I am a 34 year old female who has been experiencing weird symptoms for some time now. It started with severe vertigo and hives when I get cold in 2003. For several years I had no new symptoms and the vertigo was on and off. I did notice that I would tire out easily and assumed this was due to having 3 kids and a busy lifestyle. This April I was shopping when all of the sudden my world changed. My legs became so heavy I could hardly lift them, and I had a strange over all feeling. I came home and immediately went to bed. The next day I woke up still feeling bad and my legs had a strange heaviness to them. While surfing on the net my vision went hay wore. I could not even read anything that was on the screen. Although I was alarmed, I once again assumed it was just me being tired so I rested some more. The next thing that happened is what made me realize that it was not just in my head. My right eye was blood red and I had many floaters in it. I finally decided that it was time to see a doctor. They did an mri on me with contrast(head, neck, and total spine) this all came back negative. Over a course of a few months they tested me for other things such as Lupus and Bechets syndrome. I did not have ulcers in my mouth or vaginal area but I did have Uveitis and I assume that this goes with Bechet's. I am now on my third round of Uveitis and the fatigue is still there. My legs no longer feel heavy unless I do walking. By this I mean I cannot even walk thru a grocery store because my legs get so heavy. I was having numerous twitching and muscle pain that has ceased. My ANA and ESR were supposedly normal however I have not looked at this with my own eyes. I have requested that I get all of my medical records and test results so that I may see this for myself. Anyone have any ideas on this?? I am growing desperate. My life has completely did a 180 and I feel like I am losing my mind. I know how I feel and I know that this is not normal.
One other thing. I stay cold all the time. My feet and hands freeze and change colors. I have been told that this is something called Raynaud's Disease. Could this also cause the hives that I get when i get cold??
I would just like to say have you had a thyroid profile done,as ive got thyroid disease and have cold hands and feet,also with the weight gain and swollen neck and rash you say you get, are common off thyroid disease.I would definately ask to have my thyroid tested.and maybe anti-body testing for thyroid.
I hope this off help to you, and you get better soon.
I have looked at Lyme and while doing so something came up that intrigued me. I had Bell's Palsy twice. Once when I was 16 and again when I was 21. The latter time it did not completely go away. I have heard that it is very hard to get tested properly for it. Do you know anything about the testing?
There are places that specialize in testing for lyme (as for US, i don't know where..). The tests are very specific, as Lyme isn't a "disease" in itself, but a placeholder for many possible subclinical problems. Generally they look for certain bacteria or virus, that might be the root cause. I've been suggested to test for this myself, but I'm pretty confident that is not my problem. Very often your kind of symptoms are caused by compromised immune system, auto immune or other immune dysfunction (tend to reak havoc and surface with several symptoms). Uveitis most certainly has strong relation to subclinical issues, and once resolved, will go away. The problem with these things, is that tests are so hard, and orthodox medicine really has little to offer. This is where most people seek alternative methods, and often find them more successful.
Interesting that you had Bell's as its often related to just Lyme. Ever had a tick bite?
Yes I did when I was a kid but no bulls eye rash or flu like symptoms. I really think that mine is more auto immune simply because because most of my symptoms are not on the list of Lyme. Some of the problems have gone away which I also find odd. I wish they all would go away as I feel like hell most days. SO are you dx'd yet?? How long have you been ill?
It sounds like you may have multiple schlerosis. It is possible that your tests would be negative and the MRI negative in the beginning and later the MRI may show the telltale "lesions". My nephew's wife had an episode about 5 yrs ago when she was driving home from work. She went blind, could not see anything, had to pull off the road and call her husband to come and get her. She had been having some "weird" feelings in her legs as well, such as the heaviness and the fatigue was terrible. She thought maybe the blindness might be a migraine, so she went to bed with some meds. She awakened the next morning and still could not see, therefore went to the ER. She was admitted and further tests did not show anything specific. She was told she probably had MS, but MRI was negative. Now, she is having problems again, and it is seeming more likely she does have MS. A lot of times with MS, the first symptoms is problems with the eyes. Also have an aquaintance which has MS and her first symptoms was while she was shopping, one of her legs just gave way. She said it felt "heavy" and like it was an extra limb she was having to drag.
I have lupus and have had it for approx 17-19 yrs. Your symptoms do not sound like lupus at all. Can you tell me whether you have back pain or joint pain included in your symptoms?
Hi there! Thanks for your input. I also thought MS but when they said no then I took the doctors at their word. I am slowly learning that they do not always know. My mom's cousin has MS so there is a family link. I do have some lower back pain and between my shoulder blades I get really bad burning sensation ....sometimes my back even feels numb but again the MRI showed nothing. Lately my lower back hurts me so bad that I have to go lie down just to ease the pain some. I am also missing my periods. I took a pregnancy test, even though I had my tubes cut and burned, and it was negative. I have no idea what is going on with me but I know for sure it is some sort of illness. I just hope we can find it. It is so strange how my symptoms tend to come and go. It takes months for them to go but all the same they go. I have had no treatment other than my eye. When your sis in law complained og leg heaviness was it all the time or mainly of she was walking? At first mine was constant but now it is like when I walk more than to my mailbox and back my legs become so heavy and my walking gait gets all out of whack. My husband says that he can always tell when my legs feel this way because he can see it in my gait. How did you sister in law finally get a dx? Are they treating her? The only reason I thought that maybe lupus was because of the strange rash that I get when I am in the sun....it is on my arm. Thank you for caring!!
Well, no, I have no firm Dx, but it's pretty clear to me what it is (was tested positive for antibodies), so highly likely autoimmune (unfortunately against my retina). Symptoms surfaced some 15 year ago, very subtle, but got bad 3 years ago. Pretty much on my own at this point, no point going through the medical system, as noone cares nor have anything to offer really (...steroids? I think not.) I'm currently taking LDN (www.ldninfo.org) which has been a lifesaver for a lot of people with AI probs (especially MS). This and staying healthy, taking supplements and staying clear of toxins is my strategy. And treasuring life with my 3 year old daugther..she is my lifeline in this mess :)
I am sorry that you have suffered for so long. I feel the same way about doctors not caring....in the big picture of things it is us who have to be our own advocates. I go back to retinal doctor today so I will post later as to what is new. Take care friends!
Well I was treated like a piece of trash at the doctor. I came home so depressed but my spirits are back up today. I made another appointment with my original eye doctor. This one was with a so called specialist that really did nothing more than pee me off...lol. He wants me on 6 weeks of Pred Forte which I would not mind taking if he seemed more confident in his latest findings but to me he seemed to be guessing and that I do not like. So now here I sit with an eye that is driving me nuts and not knowing rather I should take this med or not.....any thoughts?
My last trip to the emergency room a couple of years back I was told I showed signs of MS in my upper body. They ran all the test and couldn't find anything. If they can't see it then it doesn't exist. It is all in your head. My primary care physician put me on blood pressure medicine and told my it was just a sign of old age and I would have to learn to live with it. I couldn't accept that and did research on line to try and find out what I had. Seems all these neurological disorders have similiar sympthoms. In my case I was able to identify my problem as being with my teeth. My gums were bleeding and I had many root canals and fillings. After starting a detoxification program which involved taking vitaimins and supplements my sympthoms started to disappear. I saw a mercury free dentist and had this problem taken care of. When I explained to my doctor what I thought the problem was and about the supplements I was taking he knew all about the supplements because his wife was a nutritionist. These doctors are not trained in nutritional healing but that is the only way to heal the body. Think it is important for you to examine your enviroment and see if you can identify any toxins which you can get rid of. These toxins are everywhere and in items you wouldn't even think of. Examples are aluminum in deorderant, salt, baking powder. Mercury in amalgam fillings, vaccinations, high in certain types of fish. Important to make sure you have clean water and pure air to breath. A good diet can help your body to detoxify yourself. If you google the paleo diet it has shown success in treating these neurological diseases. It cost nothing. It involves eating mostly fruits and vegetabls which contain the compounds which allow the body to heal itself. I have tried to cut back on sugar, protein and processed foods as much as possible because when you put this stuff in your body your body has to get ride of it. Same as when you put drugs in your body. The body has to get rid of this stuff. Your body is constantly trying to repair itself and if you put less of these items in it your body can concentrate on making itself well. There are many things you can do to help your body repair itself. Google words like JUICING, FASTING, BODY PH, BODY DETOXIFICATION and you can find information which might help you. Following a healthy lifestyle has allowed me to get off the blood pressure medicine and I do not get sick anymore. Before we had all these drugs Hippocrates the father of western medicine stated "Let you food be your medicine and your medicine be your food". He understood that healing is done by the body and if you give the body what it needs you have a good chance of getting well. Good luck in finding something to make you feel better.
I meant to direct the previous post to deebrown30. You mentioned that your sympthoms are recent and I believe it is important to address them as soon as possible. The longer the toxins we get in our bodies remain the harder it is to detoxify. Think you could see good results through diet and it will not cost you anything to find out.
I figured that post was directed to deebrown :) No worry. And I've also gone through almost everything you mentioned in your post (except having my mercury fillings removed, but that is on my list of things). And I completely agree with that picture.
I'm so sorry to hear you got the usual eye MD treatment. And yes, the retinal specialists seems to have an even higher a**hole factor than the rest of them. Prednisone is a steroid (to above poster asking), and you might be right, do not take them. However, every healing has it's place. The problem here is, you do not know what it is, and the steroid can be just as bad as your symptoms, and worse. Earlier when I just started to realise my problem was most likely AI related, I was begging my MD for prednisone, but he would not give it to me. Now 2 years later, I go to his office, and he asks me if I want to try a week worth of steroids. I told him no, I really do not want to take the risk. He assures me 1 week has no risks, but I don't neccessarely agree.
You have to decide if you want to take it. If you do, I would not take a whole 6 weeks worth, unless you feel it's working after 1 week. And also, steroids cure nothing, they can only lower the antibody counts, and keep them low, but will never cure your problem. In the long run it will also supress your immune system severly, which can have significant health risks. The last Eye MD i saw 2 years ago, put it this way, "the treatment is worse than the disease."
I'm not trying to scare you away from it, but do keep that in mind, and follow your own gut in this. I know how frustrating it is to have eye problems, in fact, it's probably the worst thing that can happen to anyone. I've been scared for 10 years, but now I'm at peace, but still hoping my body can smarten up :) If you do decide to take them, I would strongly suggest not taking it long term.
I am at a big crossroads in my life with these steroids. I did take them in the beginning and I feeli that it only MASKED the problem. The problem keeps recurring and at this rate I will be on steroids for the rest of my life. I have 3 kids to take care of. The "specialist" was a huge a**hole. He basically acted as if I was some nutcase just escaped from the ward. I told him I could except his answer if I did not have so many other things going on with this but seeing that I have so many symptoms and NONE of them can be explained I feel that it is all related. It was only then when he said, "yes i feel there is something underlying causing this." DUH!! I am no doctor but hello I KNEW THIS. I have never felt so terrible in my entire life. I was walking 5 miles a day, doing aerobics, and had just joined a weight loss fitness group. I lost 90 pounds on my own and felt the best that I had felt in YEARS. Then one day in April that all changed. I have very little muscle tone in my legs now I am assuming due to being non active. Steroids scare me......I just do not think 6 weeks will change much...it will take this problem away for 6 weeks and I guarantee it will be right back...I have been down this road too many times before. Last night I noticed that now my left eye is inflamed too....same feelings, same redness, same sensitivity....oh well...maybe I will look into natural meds. It is so scary not knowing what will become of you though. Thanks, Thomas for your help. Chatting with someone who truly knows where I am at in life really does help.......take care friend!
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