gonkerette Posted July 16, 2007 Author Share Posted July 16, 2007 Good afternoon, Thank you everyone for keeping me in your thoughts and prayers. I have had quite a few difficult days of being overly tired and think it is due to my connective tissue disease. Anytime I have anything out of the ordinary, it seems to kick into high gear and I become extremely tired. Thanks again to all your thoughts, care and prayers as I am a firm believer that they are a great help and that is why I always come here as it is a great source of support for me!! I hope everyone is doing well and I encourage others to come here as often as possible to get the help, encouragement, support and prayers as well as it is has made a huge difference in the recovery process of my three strokes and my mental outlook of everyday living and challenges, as well as it helps my husband who is my caregiver as we go through this journey together. Link to comment Share on other sites More sharing options...
Guest thegoodlife Posted July 17, 2007 Share Posted July 17, 2007 Howdy: Really sounds like you r really having alot of problems but also sounds lke Dr.s are on 'the stick'. Just wanted to tell you that Topomax causes that loss of appetite and weight loss. Just FYO it really has some wierd side effects. Good to hear your bp is up. Stay with the program; you have all my best and are in my prayers I know TIA's are no fun. Get lots of rest and eat well those two things help alot. Nancy (thegoodlife) Link to comment Share on other sites More sharing options...
gonkerette Posted July 29, 2007 Author Share Posted July 29, 2007 Good afternoon, I want to first say hi to everyone! I want to let you know the continue saga of my adventures. I have taken the TEE test and thank goodness there is no hole in my heart!!! That is the good news. However, we are back to where we started as far as what has caused my three strokes. I switched neurologists who ordered a boatoad of bloodwork which showed I have antiphospholipid antibodies, which is a blood clotting factor which should be 10, but is a 14 which is too high. I now have to see a blood speciaslist. I did research and found a lot of people with Lupus have this problem with the antiphospholipid anitbodies. I was sent yesterday for more blood work and will let you know the results of the test as soon as I get them. In the meantime my regular doctor left the practice, so I have been referred by another doctor to a new doctor who is accepting patients. I loved my current doctor, but I will also have a fresh second opinion of someone to look at all my issues with the Connective tissue disease, RA, strokes, hypothyroidism etc. I am working, however Friday I had an episode at work was similar to the start of my other strokes, but thank goodness it didn't happen but I still don't feel right. They changed my dosage of thyroid so they are checking it again as well. I hope everyone knows how much this board helps me and supports me with all your thoughts and prayers!!! I want to thank each and everyone of you for all your support!!!!!!!!!!! :Clap-Hands: :Clap-Hands: :Clap-Hands: Link to comment Share on other sites More sharing options...
gonkerette Posted September 5, 2007 Author Share Posted September 5, 2007 Good evening, I wanted to let you know the course of events that have taken place since I have last written. But first, I hope all of you are as well as can be and steadily improving with each day!!! I have now been released by the neurologist after a very thorough check up until a time when or if I have need to see him again. But that would only be if I have any complications once again. My new family doctor has now requested me to be seen by a blood specialist as I have had three strokes, one this year and one in each of the past two years. I have a lab slip for 10 blood tests of which 9 I am not familiar with 1) CBC with auto diff 2) CRP, High Sensitivity 3) Factor V Leiden 4) Lactate Dehydrogenase 5) MTHF Reductase Mutation 6) Phospholipid (cardiolipin) Abs 7) Protein Electro, Serum 8) Prothrombin G20210A Mutation 9) Vitamin B12 10) Beta Glycoprotein Antibodies Any help with any of this would be greatly appreciated. I know I have antiphosholipid factor 14 which 10 is good 15 is not. I have lupus, mitral valve prolapse, ra, ad raynauds. Hopefully we are getting to the bottom of the cause of the strokes. I am to take the test in Mid September THanks for any assistance you can give or shed any light on all this new type of tests they are checking on me :laughbounce: Link to comment Share on other sites More sharing options...
Phoenix Posted September 6, 2007 Share Posted September 6, 2007 WOW! You are going through a lot and I admire your strength. I don't have an answer on the tests but I am sure some other member or members may have an answer for you. I just want you to know you are in my thoughts and prayers...I wish you well! :cloud9: Link to comment Share on other sites More sharing options...
bstockman Posted September 6, 2007 Share Posted September 6, 2007 CBC is complete blood count. which is red cells, white cells, (oxygen, iron ) I believe the Factor V leiden is also part of the clotting factor for clotting disorder prothrombin is the clotting time. how long it takes your blood to form a clot. vitamin B12 is for how you absorb B12 .. checking for b12 defiency some of the others i am not familiar with checking protein levels. antibodies. which could cause vitamin or auto immune defiencies. mutation or shape of blood cells, which could make them clump or stick together. the tests will help them deterimine if you are anemic .. or too much iron in your blood, the oxygen level your blood carries. Seem to be looking for the shape of the cells. and clotting time and thickness, stickiness of blood. Sounds like the new Dr is really working to determine cause and help get you on the right medications. Wishing you the best... These tests will help them determine which medications to use. and help them determine further tests needed. Link to comment Share on other sites More sharing options...
lady k Posted September 6, 2007 Share Posted September 6, 2007 glad to see you are still working o things, good news about neurologist. marbe this next set of blood work will help narrow it down. looks like they are checking all the clotting factors and anything to do with clotting. hope this narrows things down so you can take another med LOL, but one that will fix the underlying problem. Link to comment Share on other sites More sharing options...
gonkerette Posted October 8, 2007 Author Share Posted October 8, 2007 Good evening, I wanted to touch base with everyone. First I hope everyone is doing well, with taking everyday a day at a time. I have been in and out of the MRI at least 4 times this week. I started with a sensation of burning up inside all over inside my body several weeks ago. They thought it was an infection, but didn't find one. Then this past weekend I became weak and clumsy on the right side of my body. After a visit to the er on Tuesday they stated it was a probable TIA number 4. I disagree has I have had three and this is not one. I went to the neurologist, who asked me if I wanted to be sick. After getting very defiant and telling him I was takng charge of my own health, he said he would take an MRI of my neck. I had the MRI done at the same medical building,was told to wait for the pictures. I then was told to take the pictures right away to the neurologist as he needed to meet with me right away. The MRI shows three bad vertebrae with no spinal fluid six inches below the neck. We were then sent to meet right away the next morning with the neurosurgeon who is going to operate, put in a titanium plate, heated cadiver bone. He then stated I will be off work at least month, I will have a very raspy voice for a month, and a very very weak right arm for a month which will need physical therapy. He called it Cervical Spondylotic Myelopathy I was shocked as i thought it was a flare up my mixed connective tissue disease or possible MS, which a nurse at the hospital stated it showed on the tests after my second stroke. ANY HELP OUT THERE WITH SUGGESTIONS, IDEAS OR BEEN THERE DONE THAT'S I WOULD REALLY AND TRULY APPREICATE!!! THANKS SO MUCH FOR ALL OF YOUR HELP AND SUPPORT!!!!!!!!!!!!!!! DEB Link to comment Share on other sites More sharing options...
scrapdoo Posted October 8, 2007 Share Posted October 8, 2007 Deb, I have just gotten caught up with your post here. You are a VERY strong lady! I am excited that they have found the possible link and will be working to correct it. I have not been there or done that. I do know you are a SURVIVOR. You will be feeling better and recovering more soon! Beth Link to comment Share on other sites More sharing options...
dstraugh Posted October 8, 2007 Share Posted October 8, 2007 Deb, Thank you for the update dear. I haven't been there or done that, but wanted to jump in and wish you the best. You ARE a Survivor and will conquer this latest obstacle. (((hugs))) Link to comment Share on other sites More sharing options...
kanderson Posted October 8, 2007 Share Posted October 8, 2007 hi deb, i agree you are definitely a survivor. so are they saying this is what has caused your strokes. i think i would ask for a more detailed explanation of what exactly is going on before i would let anyone operate on my spine. i know you want all of this to end, but can you get another opinion. have you had the xrays and mri explained to you and have seen the films yourself. i would do some research yourself, drs don't always tell you everything and are knife happy sometimes. this is your body and life, just be cautious before you go into this. i wish you the best on whatever you decide. i will keep you in my prayers. Link to comment Share on other sites More sharing options...
gonkerette Posted November 30, 2007 Author Share Posted November 30, 2007 Hi Everyone!!!!! I am glad to be back and to be able to say hello!!!! I missed being on the site. I hope each day finds you a little better than the day before !!!!! :Clap-Hands: :Clap-Hands: :Clap-Hands: A lot has happened and I need your help!!! I do believe and hope you know we must be in charge of our own health. As most of you know, I had another stroke in April. I was just getting over that when for some odd reason I started burning up inside all over. I could have heated your whole house for the winter if I could have found a way to get the heat out of my body. I was cold on the outside and shivering!!! This went on for several weeks and then it was though the right side of my body went to sleep on September 29th. After three MRI's the neurologist asked if I wanted to be sick???? even though I could not walk heel to toe or do anything else he asked me to do!!!!! I told him luckily our insurance did not need a referral and NO I did NOT want to be sick and would get to the bottom of it. He looked at me and decided to do the fourth MRI soecifically of my neck since my regular doctor had ruled out MS. As soon as the MRI was finished and read he wanted to see me immediately that same day. "See I told you I would find the problem" at which I repsonded No, I told you there was a problem and I would get to the bottom of it by insisting I knew something was terribly wrong. As it turns out, he stated I needed a neurosurgeon immediately and was in that office the very next day to schedule a corpectomy which took place on October 18th!!!! Needless to say I will have a new neurologist who is with the spine institute with the Neurosurgeon who could not believe what I had been through. I am very fortunate as they state with the lack of spinal fluid and the amount of compression on the spine, I was approximately three weeks away from being permanently paralyzed on my right side. I am so glad I do believe in being in charge of my own health and I hope everyone else is to. You know your body better than anyone else!!!! I had an been sent to the hospital emergency room by that same neurologist who said since they couldn't figure it out he guessed I had a fourth stroke, but thank goodness I knew I didn't as I have had three and knew it wasn't that but they couldn't figure it out either. If not for my persistence who knows what shape I would be in today. I have multiple connective tissue disease and am wondering if anyone else has this and also had to have a corpectomy?? Also, if anyone had a corpectomy, how in the world do you lie down in bed as I am in a recliner. The place that made the neck brace stated his clients all state the recliner is their best friend for quite a while. The surgeon states it is hard to get comfortable and most do spend their time in a recliner. I was wondering if anyone found an alternative and could go to bed as I feel I would perhaps rest better?? Any help with these questions would greatly be appreciated. REMEMBER, BE IN CHARGE OF YOUR HEALTH AND YOUR BODY!!!!! :laughbounce: Link to comment Share on other sites More sharing options...
bstockman Posted December 1, 2007 Share Posted December 1, 2007 I have never had anything like this. But one thought is a bed wedge. that would fit under the sheet. I know many Department and Bed and Bath store sells them. Maybe a Home Health Care Store has something. Or an adjustable bed... craftmatic comes to mind. If the Dr writes a prescription, you may be able to get Insurance to pay for some of the cost. Or possible renting a hospital bed for a few months. SO glad to hear you were persistent.. Yes we often know our bodies better, I hope that Neurologist learned a valuable lesson... sounds like he had both feet stuck in his mouth after that comment.... Sounds as if the Neurosurgeon has much more empathy and better bed side manor. Best Wishes.. I know it's a rough recovery, but so glad you were so active ... and You are doing better Link to comment Share on other sites More sharing options...
gonkerette Posted December 6, 2007 Author Share Posted December 6, 2007 Hi Everyone, Hope all is well. I had a fourth stroke October 2 and from there found I was burning up inside and after living in a MRI machine off and on for practically a week found out I needed a corpectomy. I needed to be off all blood thinners for two weeks and then the corpectomy was done. It was to be a three hour operation which turned into a five hour operation. The recovery has been very slow. I have mixed connective tissue disease which is really rarely it's self at this time. Has anyone else experienced this? At first they thought I had MS due to all the burning sensation but were able to rule it out fortunately, but then I needed to have this done at the c5 and c6 or in three more weeks I would have been permanently paralyzed as the spine would have been compressed too long without any fluid. I took charge of my own health as the neurologist looked at me after the third mri and asked me if I wanted to be sick???? and that was when I couldn't walk heel to to without falling over. After I got angry he then order the fourth mri specifically of the neck and then told me he was glad he found the problem and I needed a neurosurgeon like a day late and a dollar short. I found a terrific neurosurgeon who I can't thank enough at our local Spine Institute that is fairly new in our area and has a neurologist on staff. I want to let everyone know how important it is to get answers since we are the only ones who know our own bodies and know what is going on and whether we are sick or not!!!!!!!!!!!!!!!! Thank goodness we do not need a referral for a specialist!!!!!Always rembember to be in charge of our health since if we aren't no one else will!!!!!!!!!!!! Please if anyone else knows about a corpectomy and the healing time especiall with immune disorders, mine is mixed connective tissue disease, a mixture of lupus, scleroderma, etc, please assist as I am always looking for information and to be educated. I am glad to finally be able to be back online where I know my support group is always here for me!!!! Link to comment Share on other sites More sharing options...
gonkerette Posted December 12, 2007 Author Share Posted December 12, 2007 Hi everyone! I hope everyone is doing okay today! I am still sleeping in a recliner as I have not found a way to be able to sleep comfortably in bed. What I can do is try to sleep and keep my husband awake all night which is not a good thing as he as to work the next day. He never complains but I know he didn't get any sleep. I am in the hard next brace but at least my head doesn't feel like it still weighs 100 pounds. I am doing exercises to strengthen my neck and back muscles. I just get tired very very quickly. I just got the results of another xray and then did C3 thru C7 which they thought they would only have to do C5 and C6. It has been quite a roller coaster. I passed out the other night as I apparently was running a high fever during the night. I am going for another xray to make sure everything is still in its correct place. I have not found anyone else who has had a corpectomy to be able to compare. It still feels like I have a golf ball stuck in my throat but they said that feeling will eventually will go away. I hope everyone is doing as well as they can. I have found time to read which is great. I feel as long as I can read I will never be bored. I am now able to read more than a few paragraphs at a time without getting too fatigued, which is great!!! Thanks so much for all your support as this is my refuge where I know that everyone understands and supports each other! Thank you each and every one!!!! Link to comment Share on other sites More sharing options...
Phoenix Posted December 13, 2007 Share Posted December 13, 2007 Wow! You have been through so much in just a few years. As I said in a previous reply to you, I admire your strength and determination. You are such a strong individual and BRAVO! :Clap-Hands: to you for taking charge of your health care and questioning that nuero guy who asked you such a silly question, of course nobody wants to be sick! I was glad to see you post again and update us here as we do care and offer our support to you big time. :bouncing_off_wall: :hug: I will keep you in my prayers and wish you the best. I also want to wish you a Merry Christmas :santa: :fireplace: :santahat: and a Happy New Year! :yay: Link to comment Share on other sites More sharing options...
kanderson Posted December 13, 2007 Share Posted December 13, 2007 hi gonkerette. boy you have been through the ringer with all you have had to deal with. i agree with you completely about being in control of your healthcare. do not let any doctor treat you like you know nothing about your body and how you feel. thank goodness you took the bull by its horns and got a doctor to listen to you and found the problem. i hope you are able to find something better for you to be able to sleep instead of the recliner. keep up the good fight, you are a very strong and determined woman and that is a good quality to have. i wish you and yours a very happy christmas and a great healthier new year. stay well and take care. Link to comment Share on other sites More sharing options...
gonkerette Posted December 21, 2007 Author Share Posted December 21, 2007 Good afternoon, Thanks so much for everyone's support. It means so much to me. I am still sleeping in the recliner and hope not for much longer. It is the only way I can get any good sleep. I still haven't found any other answer yet. I was to see the neurosurgeon December 19, but he had an emergency surgery so I go back January 2. I am getting lots of rest as I get tired really quick. My regular doctor said my multiple connective tissue disease is really flared up due to the surgery etc which is making me extra tired. I am resting as much as possible as I know when I go back to work, which I definitely will!!!! I will need all the rest I can get until then. I have been taking morning and afternoon naps. The tests are definitely showing I had a fourth TIA on October 2. They are still trying to figure out what is causing those. I keep plugging away day by day which is they way I am. I want to be able to do as much as possible. I am practiciing my keying as I work in c/s and key all day while taking phone calls so I want to make sure I can do that in order to return to my work. I always find it helps a lot to do a little each day to practice once I am able to do it. I usually mix my letters up at first and have to delete and repeat but find it is well worth the effort. I hope everyone is doing well and looking forward to the holidays. We are looking forward to seeing our four children and seven grandchildren with the eighth expected on May 3. I hope everyone has a great holiday season. As I always encourage everyone to come here as this is the best support!! Everyone here knows what it is like to have strokes and can relate and help each other and encourage each other. It is a true blessing to have this message board. It helps me get through everything!!!!!! :Clap-Hands: :Clap-Hands: Love to everyone and a great holiday season! Link to comment Share on other sites More sharing options...
gonkerette Posted May 1, 2008 Author Share Posted May 1, 2008 Hi Everyone!! I have been away for quite awhile from the computer. So much has happened. Last September I started feeling as though I was burning up inside, but no other symptoms until September 30. All of a sudden in the afternoon, my whole right side was as though it went to sleep and would not wake up. My husband called the doctor and I was there very first thing in the morning. I had no reflexes on the right side. The next visit was to the hospital. I had the fourth stroke but there was also something else wrong but no one could figure it out. After 4 MRI's unfortunately a neurologist asked me if I wanted to be sick. I actually stood nose to nose with him after I failed the heel to toe walking test and said no but I would find someone who could figure out what was wrong with me. He asked me to have an MRI of just my neck and return as soon as the test was done. Then he said I told you we would find what was wrong, upon which I said no I told you something was wrong and I was going to get to the bottom of it. I needed an operation as of actually before I went there. I had to have a corpectomy on October 18 as I needed to be off my blood thinner medicine. They took out vertebrae 3-7 as I had no spinal fluid and the vertebrae were flat. They said if it went two more weeks I would have been paralyzed on my whole right side. It is taking a long to recuperate from the surgery. I am on my second neck brace. THis is the softer one. I am thankful I am not paralyzed, but it has been a long road. I slept in a recliner for months. Now I am in the bed with the use of a wedge and a pillow to support my head and with the four strokes and lupus. I get extremely tired so very fast. I am back to work, but that is a major task in itself. I don't know how I make it through each day but it is with the Lord by my side, I do know that. My husband has been my caretaker and now has just had surgery for ruptured tendons in his foot. He is my heart and soul and would do anything for me. I just want everyone to know if Dr's pass you off, please be persistent, as if I hadn't been I probably woudl be paralyzed today if not pushing for answers. I miss being on the site and glad to be back. I wish all of you well!!!!!!!!! :forgive_me?: Link to comment Share on other sites More sharing options...
gonkerette Posted October 9, 2008 Author Share Posted October 9, 2008 HI Everyone, I just got home from the hospital from another TIA, which is my fifth. The doctor's believe it is from the lupus and the fact that I have the antiphosholipid factor. I was at work and then I started feeling really tired. I got up to go to the restroom and from there on I don't remember anything. I am home on bedrest and to recover. In the meantime I just found out I have wide angle glaucoma for which I am on eye drops for. The drops are working thank good ness.. My husband is off work as he has foot surgery and ended up with deep vein thrombosis in the left leg and it was very scary as if I wouldn't have insisted he get an ultrasound they said he would not be living today. Then we turn around and a week a go he lost a brother in law who had dvt, was in the hospital, but unfotunately a piece broke off and went to his lung and he died at age 54. I am 53 and have had 5 tia's/ It is very scary. My doctor's are on top of everything. I have mixed connective tissue disease. fibromyalgia, antiphospholipid factor, hypothyroidism and glaucoma. I am still working when I can. It is definitely an uphill battle but we are from wealthy. While my husband was in the hospital the company he works for closed the plant he worked at but he is still an employee of the company until they release him. He is trying therapy now. THe problem is if he is up on his leg very lone, even with the compression hose. the leg with the dvt is a very odd color and then gives him a lot of pain. I am extremely worried about him and he is extremely worried about me. Please keep us in your prayers as we go through this one day at a time and prayer for the strength to get through this. THanks so much. I really appreciate it! love Gonkerette Link to comment Share on other sites More sharing options...
gonkerette Posted October 13, 2008 Author Share Posted October 13, 2008 Hi everyone, I just got out of the hospital with another stroke a week or so ago. This is number 5. I am doing alright so far except I was extremely fatigued before it happened, and now I am finding it hard to do anything but sleep as of all the strokes I have never been this tired before. Please keep me in your thoughts and prayers. I have lupus, antiphospholipid factor, hypothyroidism and mitral valve prolapse as well as fibromyalgia. Any suggestions would be greatly appreciated, but most of all your prayers and any thoughts you can send would be most greatly appreciated Link to comment Share on other sites More sharing options...
dstraugh Posted October 13, 2008 Share Posted October 13, 2008 My thoughts and prayers are definitely with you as you continue to recover. Please rest when you are tired; I'm sure even Wonder Woman rested when necessary Link to comment Share on other sites More sharing options...
jjohnson Posted October 14, 2008 Share Posted October 14, 2008 Hi there: just wanted to let you know I keep you in my prayers and just don't ever give up the good fight, you are a warrior, don't let the beast get you. I am a Brain Stem Stroke Survivor, however, I've had TIA's the past year or so, and let me tell you, those strokes really have taken it out of me. I had two back to back, but, I won't let them win. I just pull myself up from my bootstraps and keep going on my journey. God is carrying me when I can't .... You just continue and keep us posted. Keep the HOPE alive and the FAITH strong in your heart. Take care. God Bless, BELIEVE IN MIRACLES AND SOAR Hugs, Jan :Clap-Hands: Link to comment Share on other sites More sharing options...
gonkerette Posted October 18, 2008 Author Share Posted October 18, 2008 Hi everyone, Thanks for all the prayers and support. I really appreciate it! Right now it is one step forward, one step back etc. I am really wiped out this time more than ever. Yesterday I did manage to dust some of the house which made me feel as though I conquered Mt Everest!!! Today I am resting as I am back to wiped. But I know I need to do things to get better, but know I have to reserve energy at the same time. I have Lupus as well as it is part of my mixed connective tissue disease. It is so frustrating. My husband is so supportive which really helps. We almost lost him earlier this year when he had to have foot surgery and ended up with a blood clot from his groin to his ankle. Thank the Lord it did not go to his lungs or heart. He is unable to work as his leg is not right nor his foot ever since but we are every day thankful he is here. He is my caregiver and gives me so much. I need to get back to work which hopefully will be Nov 15 or so. I will keep you posted with my progress. This helps to write to get my feelings out as I am so emotional right now as I am after every TIA I have had. It also helps me to know I can key as I am in c/s and key most of the day to note accounts. It just seems as if my body goes until it can't and then it crashes with a TIA even though I come home every day and rest and I my children are all grown and on their own. I use to work 3 jobs and 100 hours a week when I was a single parent. I just need to figure how to hook my body up to a generator!!!!!! Thanks again for all your support and prayers. It means so much!!!!! Link to comment Share on other sites More sharing options...
merichsen Posted October 18, 2008 Share Posted October 18, 2008 Deb, Congrats on your dusting accomplishment! Sorry your husband is having such a rough go of it. You can't hook your body up to a generator so take it easy and your friends here will keep you in our prayers. Blog with us, it's a great way to work through your emotions. Maria :friends: Link to comment Share on other sites More sharing options...
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