Jump to content

Jeanie60

Members
  • Posts

    9
  • Joined

  • Last visited

Everything posted by Jeanie60

  1. Hi Everyone, When I saw this post on bone pain, I had to chime in. I have rather severe Raynauds and I have dealt with a lot of bone pain. My docs were rather stumped as to what was causing it, but when my doctor started treating my Raynauds with a drug called Tiazac, the bone pain subsided greatly. I would get a lot of bone pain in my forearms and elbows. I still have some problems with it, but for the most part it is better while treating the Raynauds. If you get pain in your arms, try going into your freezer and handling some frozen vegetables, meat etc. and see if it makes it hurt worse. When I went to my rheumy appt. this last week, I have also found out that I am getting infarctions in my toes. I didn't really know what that was, but anyways, I get these blood blister type looking things on the tips of my toes. It is because I am not getting enough oxygen to my toes. My Raynauds is rather severe in my feet as well as my hands. This can be rather dangerous as they told me that it can lead to tissue death. That was the blood blister like things I saw on my toes. Pretty scary stuff. Anyways, vascular problems may be something for you to think about and maybe do a little research on. I have not found anything on Raynauds that says it can cause bone pain, but with my history, it seems rather likely that my bone pain has been vascular. BTW-I am not sure if the infarctions are caused by Raynauds, but they are vascular. Take care! Jean
  2. I have been getting the flu shot now for the last few years and my docs seem to recommend it. I don't have dysautonomia, that I am aware of at this time, but do have several hard core autoimmune diseases as mentioned in my first thread. The first time I had a flu shot I became really sick. What we think happened is, it take the flu shot 2 weeks to get into a persons system. They believe that I was exposed to the flu before or shortly after the shot. Perhaps I caught something at the clinic where I had the shot done. I think everyone is so individual with this and that a patient really needs to weigh the options out with the guidance of their doctor for their own personal situation. Something else to consider is the shot is not the same every year. They chose the most likely flu virus that they think will cause problems, but they can be wrong and chose to cover the wrong one. So perhaps a shot that made you sick one year, will not make you sick this year due to the different components in it. I know it is a hard decision to make. Especially when you had a previous bad experience. For me, I feel like Angela, it is much riskier for me not to get it. Take care! Jean PS-When I can tell I am getting a cold, I use the product Zicam. It is homeopathic and I use the kind that you put in your nose. I'm not endorsing this product, but just letting you all know that it has worked well for me. When all of my family has been sick with terrible colds, I have squeaked by and have not been affected by using it. At the first sign of a cold, put in nose. For me it has knocked it out before it gets started. At first your throat may seem a bit more irritated, but then it does its job. I have several friends and family who have tried it and it has worked well for them, too. My oldest daughter could not take it as it irritated her nostrils too much, but she is the only one that I know of that has complained of that.
  3. Hi Everyone, Thanks Tanz for the advice. I went to see the Nurse Practioner today that works with my rheumy. She is doing a battery of tests. I didn't get your message until I came home so I didn't get a chance to ask about the saliva test. For thyroid, I know she is doing a TSH and a T4 Free test. There were some tests I have never heard of. She did a cortisol test this afternoon and then I will have one done at 8 am tomorrow. I guess the best time is in the morning, but there is some sort of formula that they use for afternoon tests so it isn't impossible to do. I suppose because if a person is in a crisis they can't wait till morning before treating to get the labs. Anyways, I am to start back up on prednisone again after my blood draw tomorrow. They did the blood pressure test laying, sitting and standing and I think that went well. I don't think they are leaning toward dysautonomia at all, but the thyroid/adrenal/maybe pituitary gland way. Time will tell. I have had the sweats and chills for the last several days and wouldn't you know, today I did pretty good and temp was fairly normal. I'm thinking there could be a lag in blood changes. She also said that I am getting infarctions on my toes. I'm not sure what that is, but she said it leads to tissue death and to keep a vigilant eye on that. I'll let you all know how things work out. Thanks again for kindness. Jean
  4. Thanks for your input Tammy. I'm not sure how they can catch it when it has the ability to flip flop from one to another. I was able to talk to my rheumy this afternoon and she said that she is concerned about adrenal insufficiency and/or thyroid problems. She has set up an appt. with the nurse practioner in her office and will follow up on Monday at my regular appt. Hopefully I can start to find some things out yet this week. Keep your fingers crossed for me that I can find out some information as to what is going on. Best wishes to you too. It is so frustrating, isn't it?! You know something isn't right, your body just tells you the best it can, but sometimes not always good enough for these tests to pick it up. It took me almost a year for my doctors to find a tumor (thymoma) in my chest after complaining for months. One doc even took X-Rays on two different occasions and told me eveything was normal. Come to find out the tumor had presented itself on the X-rays, but the doc I had at the time didn't feel it was worth mentioning to me. Radiologist had recommended a CT scan both times and my doctor didn't feel it was necessary. Finally my rheumatologist that I had at the time did his own X-ray and zeroed right in on it. I don't know what the other doc was thinking. Unfortunately, my rheumy moved out of the country shortly afterwards, but he sent me to the one that I am seeing now and she is very good. So I have lucked out there! LOL Take care, Jean Thanks, Jean
  5. Hi All, I saw my neuro last Weds. and told him everything that is going on and he told me it appears to be an another autoimmune disorder going on. I don't know if dysautonomia is autoimmune or not, but while poking around on google, I looked up some thyroid issues. I have a lot of symptoms that may be considered thyroid. My average temperature is 96. At times when I take it it can be as low as 94. I seem to be very sick during those episodes. Yesterday wasn't too bad and I was in the 97's. I think there may be a pattern that I'm finally realizing. From what I understand it is not impossible for a persons body to teeter between hyperthyroid and hypothyroid which can give reason for having terrible sweats then being cold and the cycle starting all over again. Many things that I currently have going on seem to fit in this catagory. My next appt with my rheumy was Oct. 16. Twice my neuro said during my appt. that I need to call the rheumatology clinic and get my appt bumped up sooner. He told me to call and tell them that he is concerned and that the 16th is too far out. My new appt. is Oct. 2. If my rheumy doesn't figure this out I am going to ask her for a referal to an endocrinologist. From what I understand, certain thyroid problems can be extremely tricky to figure out. Especially when it rocks back and forth. Because a person can be in between hyper and hypo and they call it euthyroid in between. Many tests can come back normal when there is big problems going on. Has any one here experienced this? From what I understand a person can have a tumor in the neck and CT's and ultrasound may not even see it. This is Riedel's thyroiditis. Since having a tumor removed from my thymus, this is certainly one concern for me. But Hashimoto's thyroid is another, rocking between Graves thyroid. It certainly is an interesting subject and I can't help but wonder if this is what is going on with me. I have had several relatives with thyroid problems, so I think it is very possible that this may be what is going on here with me. I would be very interested to know if any of you have had thyroid problems dx and whether you had a similar experience. Thank you for your help. Jean
  6. AJVDK, Thank you for the warm welcome. Everyone is so nice here. I don't know if it is dysautonimia that I have, but until it is figured out, I appreciate having a supportive place to hang out until I know what's really going on. Thanks, Jean
  7. Hi Ernie, Sorry to hear about the hospital visit. Hope you continually are on the mend. This just seems like a very nice and caring place to visit. Thanks for the warm welcome. Jean
  8. Thank you to Everyone for your kind responses. As you all know, whatever our health challenges, they are ours and they can be very difficult to understand and to cope with. None of us asked for these problems and as you all know as well, we deal with them one day at a time. Some times one hour or one minute at a time. Some days are just easier than others and other days we don't want to push the covers off of ourselves in the morning. Thank you for the information that you have given me. I see my neuro today, so I have several questions for him. He's not the best communicator in the world, but I will go with a list. Usually when he sees a piece of paper in my hand he slows down a little bit knowing that I have additional concerns. Dionna, I too have lots of knots in my muscles. Some things that I have found helpful is warm water pool therapy and theraputic massage. Massage can be expensive. I hope that someday that insurance companies will see the medical benefits from this. This has helped my muscles more than any medication could ever touch. But if you have the means, I recommend it. If not, you may try asking them if they would do a trade. Some spas will trade having someone answer their phones for an afternoon or whatever for trade for their services. I was just told this recently. At least in my area I guess it is rather common. I don't have fainting spells, well, at least not in a long time. I do have insomnia. My sleep meds help to get me to sleep, but I tend to wake up a few hours later and can't fall back to sleep. As I mentioned in my first post, at times I feel like I am suffacating. I have a small window in my day, usually between 12 and 3 that I can get something done. Then I'm done. Been having problems with chewing as well. I had problems at first with swallowing and double vision, but this was due to my MG and it is better now with treatment. The Mestinon and Cellcept have helped that. I still get it occasionally, but has greatly improved. My husband says that I snore. I never used to, but I know it has become more of a problem in the last few years. I have never been evaluated by an electrophysiologist. I have never heard of them, actually. I will have to check with my university hospital and see if there is someone I could see. Thank you again for all of your help. I'm sorry to know that you all are going through such a hard time yourselves. I guess that is how we find our strenghth sometimes, to know that we are not alone. Hope to get to know you all better in the future. Hugs, Jean
  9. Hi Everyone, I?m new here, 46 yr old, female and not sure if I have dysautonomia or not. Perhaps you can give me some advice and maybe help me to know better what questions I need to address my doctor with. I see my neurologist tomorrow and my rheumatologist mid October. A little history, well actually a lot: I was dx with Systemic Lupus in 99 along with severe Raynauds. In 2001 I was dx with a thymoma, a tumor of the chest, that was surgically removed and associated with Myasthenia Gravis. After the surgery I became more ill, I was dx with MG in 2002. Should have been dx in '01, but no one thought to check until ?02. Not something I would have thought of since I never had even heard of it. In 2003 was dx with Fibromyalgia and in ?05 was dx with Autoimmune Hepatitis. Also have osteoarthritis, osteopenia, have had a complete hysterectomy due to my second round of teratomas and then a twisted fallopian tube. I have had my gallbladder and appendix removed and thymus(with the thymoma). I also have Livedo Reticul?(sp?) and at times, very low blood pressure. Have spinal problems as well, and surgery for ruptured disk in '88. I am on many medications, some of the main ones, Plaquinel(for Lupus), Mestinon (for MG), Tiazac(for Raynauds, but went off for the summer), Cellcept (for MG and AH), Nexium, Provigil(severe fatigue), Oxycontin for pain, Ambien, Flexeril, and Trazodone for sleep, and several more. I have had problems with severe sweats that just come on without any notice. I don?t believe they are related to my hysterectomy. I never had problems like this at time of hysterectomy. I flush very easily and I can be sitting still and all of a sudden the sweat breaks out of my skin in BULLETS, everywhere. My clothes and hair are soaked. I feel like such a slob even though I shower a couple of times a day. It is so embarrassing when it happens, especially when others are around. I find myself not going places because of it. I feel like my thermostat is broken. Sometimes I think it is brought on by stress, sometimes physical position, warm or hot food and other things unknown. I occasionally have problems with bowel control. Not often, I am generally constipated, but even then, out of the blue, some will slip by me and there is no holding it in no matter how hard I try. It is not a full movement, just a very small amount. I sometimes have problems with urination. When I have to go I can?t always get it to come out. Then when I stand up, it decides it wants to come out and I can?t stop it. I have been having trouble with sharp pain in the tips of my toes and fingers and occasionally get blood like blisters on the tips of them where the pain is. I don't think it is petechia, I have that in other areas and have never had pain associated with it. I recently had pleural effusions on my lungs and went through antibiotic and an anti-inflammatory regimen. It helped, but chest still feels full and sometimes hurts. I have shortness of breath often and sometimes just feel like I am not getting enough oxygen and that I have to concentrate on my breathing to get a full breath. Sometimes at night I feel like I am suffocating and wake up. It happens many times in the morning with bad dreams. Not sure if I am having apnea episodes. Sometimes I even dream I am suffocating prior to waking up and then have to try to catch my breath. Then I'm scared to go back to sleep. I suffer from joint and muscle pain all over(neck, shoulders, feet, hands, knees, you name it), severe fatigue, all over weakness, especially neck, arms and legs. Occasional nausea and dizziness. I also have problems with eating a meal. I fill up fast and get stomach aches easily. I do better grazing through the day with a light meal. Savory foods tend to bother me the most, but unfortunately my love for sweets hasn't changed, though I do have to eat that in moderation, as well. I talked to my rheumatologist, who bumped up my next appt. (mid October) and she wants me to take my temperature while feeling normal and then again while going into severe sweats. Except for while dealing with the pleural effusion, temp was over 101 then, I usually have an extremely low temperature. It will be 95 and 96 degrees, point something. The highest is usually 97 something. I?m not sure what she is looking for. Sometimes when I am in the sweats my temperature will get even lower. A few times it has stayed the same and once I think it went up a smidgen. Sorry this is so long, and I know I didn?t get to tell you everything, but I think I have bombarded you all with more than enough information already. I know that many of the symptoms can be related to the things that I already have been dx with and I certainly don?t need anything else on my plate, but I just feel like I am going down fast for my age. I used to be a very active fit person, who loved to exercise, dance, cook, and even work. I?m very frustrated and feel like my life has been ripped away from me. I have been tested for MS. My last MRI of the brain showed possible white matter in a few places( with the term, could be technical), but neuro thought all in all the scan looked pretty good and wasn?t too concerned about what the radiologist possibly was looking at.. At least not at this moment. So just waiting to see if anything else arises. Though he said even MRI?s don?t always show the true picture. I currently see my neuro for the Myasthenia Gravis. MG/MDA is his specialty and there are very few neuro?s who specialize in MG, so haven?t been out to get a second opinion because of that. Thank you for any insight you may be able to give me as to whether I may have dysautonomia going on as well. Maybe my docs already suspect it but haven?t really emphasized on it with all of the other stuff going on. If there are any self tests that I can do, I would appreciate any info. Sometimes I feel like I am dying a slow death with all of this stuff. I'd appreciate any info you can give me. Thanks again, Jean
×
×
  • Create New...