TravelingChris Posted April 2, 2012 Share Posted April 2, 2012 Here is the good news. Yesterday she was able to go on a natural trail in the mountains with us and walk slowly, with many breaks (because there were benches around) and actually walked about a mile. Today, after PT, she came home and this afternoon was able to make brownies with only a bit of help. She is now planning on how to CLEP some classes so she can still get credits, and also planning to volunteer while she is waiting to get better and get a diagnosis. IN the meantime, she is doing PT to at least preserve muscle tone to the most she can. She found out today that she doesn't have hardly any muscle control over one side of her torso which is why getting up is so hard for her. We don;t have any doctor appointments for her until early May. She definitely has gotten somewhat better. She still collapses if walking by herself without any support but she can walk with a cane better. I know that in the second week of March when she was at her worse, she would not have been able to walk around the lake on the nature path like we did. She is learning to take it easy and yes, she uses the wheelchair a lot. But it makes it possible for her to do things like bake brownies. I did take them out so she wouldn't get burned but she was able to totally prepare them, and put them in the oven. She is going to look into volunteering at the Botanical Garden in the plant propagation area. She knows she can start seedlings so if they have any need for that, she can help. She also plans to help with political campaigns by phone calling from home. She is studying Spanish to prepare for going into a higher level class. She is going to look at her university's policy on CLEP exams and also online classes so she could try to make up some of her lost classes. Her mind is usually fine and sharp even when her body isn't working well but in her worst times, she does get what she calls fuzzy headedness. I am trying to look at positives like I am able to help teach her to cook better before she moves into her own apartment and it is very pleasant to have her here- minus her illness. But as she has gotten a bit better and adapted more, my workload has been lessened/ At first, it was like having a toddler since she couldn't walk and couldn't get things for herself. Now I still do more for her but she has even figured out a way to shower almost completely on her own. Thank you for all your thoughts and prayers. She has to withdraw because while two teachers were willing to help her, one really wasn't very cooperative and she did not want to risk a bad grade when the teacher graded rather arbitrarily and based tests on her in class comments and not on the textbook. When she does go back to college, she will be trying more classes at the beginning of the semester and dropping any that have unhelpful teachers, if she can. There were clues to this teacher's issues at the beginning of the semester but my dd hasn't thought of trying classes out. Now she knows to do that. Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted April 2, 2012 Share Posted April 2, 2012 Glad your dd is improving. Thanks for the update. No more appts until May? I'm surprised they wouldn't try to get her in more quickly. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted April 2, 2012 Share Posted April 2, 2012 Thanks for the update. I was thinking of your dd lately. Did they ever figure out a diagnosis??? Have they checked for Lyme? You are in our prayers. Faithe Quote Link to comment Share on other sites More sharing options...
Twigs Posted April 2, 2012 Share Posted April 2, 2012 :grouphug::grouphug::grouphug: Quote Link to comment Share on other sites More sharing options...
Jane in NC Posted April 3, 2012 Share Posted April 3, 2012 Chris, I am a firm believer that things resolve themselves and work out for the best. Your daughter sounds like such a trooper. Wishing her good health! Jane Quote Link to comment Share on other sites More sharing options...
Barbara H Posted April 3, 2012 Share Posted April 3, 2012 It sounds like a tough time for all of you, but may I say I'm so impressed that your daughter is still pushing to bake, volunteer and so forth. I also wondered about Lyme. It is often missed. I hope your daughter's health continues to improve. Quote Link to comment Share on other sites More sharing options...
Starr Posted April 3, 2012 Share Posted April 3, 2012 Once you can bake your own chocolate you know things are looking up. :D It's great to hear some good news. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted April 3, 2012 Author Share Posted April 3, 2012 No, she doesn't have Lyme disease nor a heart condition, brain tumor or leukemia. All these things were ruled out. Of course, that still leaves lots of other possibilities. I am thinking it is an auto immune problem but which one I don't know. Fact one, auto immune conditions run in the family including me having 3. Fact two- she got sick very shortly after she had a sinus infection and autoimmune diseases often start after your immune system had a real reason to be called into action and then it keeps on wreaking havoc after the bacterium is wiped out. Fact three- the way she keeps getting a bit of strength then totally worn out just reminds me of how I used to get before I was diagnosed and put on proper medications. No, I never had her specific problems and had others but the fatigue issue is similar. She seems to have problems with her muscles and mine are with my joints and also my exocrine system. But we do have more doctors who will be seeing her and I am hopeful that if no one else gets it, the Mayo clinic which is used to having medical mysteries will get it. Unfortunately, she is our second medical mystery. About four or five years ago, her younger sister was breaking bones very easily and it was only after more than a year that we found out she had a very rare condition- juvenile ideopathic osteoporosis= which was a condition only found in less than 200 kids worldwide. She did outgrow it like those kids did and now she is doing fine and her older sister has the mystery disease. Quote Link to comment Share on other sites More sharing options...
Kareni Posted April 3, 2012 Share Posted April 3, 2012 I am sorry to hear that your daughter did indeed need to medically withdraw from her college but am happy to hear that she seems to be improving. I hope that helpful answers and more improvement will be coming soon. Regards, Kareni Quote Link to comment Share on other sites More sharing options...
creekland Posted April 3, 2012 Share Posted April 3, 2012 Thanks for the update and I'm glad to hear there are some positive things, but I feel badly that she had to withdraw from college. It's hard not to think a few bad things about that professor in her situation. I hope you get answers in May and that she continues to improve in the meantime. :grouphug: Quote Link to comment Share on other sites More sharing options...
Catherine Posted April 3, 2012 Share Posted April 3, 2012 Guillan-Barre-has she seen a neurologist? The time course and onset after an infection made me think of that. Quote Link to comment Share on other sites More sharing options...
8filltheheart Posted April 3, 2012 Share Posted April 3, 2012 :grouphug: Our oldest was diagnosed w/Lupus 2 yrs ago. Getting an accurate diagnosis was next to impossible b/c white young males are definitely NOT typical Lupus patients. Unfortunately, he almost died b/c of ignorant drs. He went to the hospital in severe chest pain and told the drs that he had Lupus. This was about 6 months after his diagnosis and they didn't believe him.) They told him his chest pain was from pneumonia and sent him home w/antibiotics. He called me crying in pain. (this boy does not cry!) I was at our neighborhood pool and our family dr was there and I went over to talk to him. He spoke to our ds on the phone and told him to go back to the hospital immediately b/c he believed ds had an pulmonary embolism. He told ds to REFUSE to leave until they ran a list of tests that daughter in law wrote down to take in with them. (our dr knew he had been diagnosed w/Lupus and PE's are not uncommon amg Lupus patients.) When they went back to the hospital, the ER dr told ds he was a baby and that simply needed to suck up the pain. She stuck him on a gurney in the hallway and ignored him for 2 hrs. Only b/c they went in there armed w/ a list of what they wanted done and refused to leave, did the tests finally get done. Ds did have an embolism and almost died. By the time I got there (they live in another state), he was grey, running a dangerously high fever.......he was in the hospital for over a week. It was terrifying how close to death he was. (and if he had gone home, he would have died.) When I look back over the last 2 yrs, I didn't ever believe he would ever be the healthy young man he appears to be today. Christmas 2 yrs ago he could barely move, he was mostly bald, his face and ears were blistered, and he looked like a combination between a rusty tin man (jerky and having to throw himself to move his legs and walk) and a scarecrow (he lost so much weight). All that is to encourage you to keep pushing for a diagnosis. I would try to get earlier appts (you can call and ask to be put on their notification list for cancellations. Sometimes you can get in in days that way.) Prayers that you find answers soon and that your dd gets on a path to recovery. Quote Link to comment Share on other sites More sharing options...
Hoggirl Posted April 3, 2012 Share Posted April 3, 2012 Thank you for the update. I pray that the doctors are able to diagnose her properly. :grouphug: Quote Link to comment Share on other sites More sharing options...
Mommyfaithe Posted April 3, 2012 Share Posted April 3, 2012 We had a similar experience with Lyme Disease. Ds is still recovering...slowly, but recovering. He was not able to walk...he is an athlete, this was horrible, but worse, he could not communicate well....meaning: he would think "chair". And say "table". This is common in advanced Lyme.... Totally scary!! We are now 2 years post diagnosis....and he is almost back to normal. Weird things keep popping up....like, he could not remember his 4 times tables....or how to do a long division:tongue_smilie:. We had to reteach him how to write, as some of his letters were gone....we had to reteach him how to read because he couldn't remember to track properly. He is doing really well now, reading, writing and computing etc. He works hard, but gets really frustrated.....so we work hard in small sessions We will be getting ready to start CC classes in the fall....YIKES!!!!! He will only take 1 or 2, and we will see how it goes.... Praying for you and yours....and for answers,!!!! Quote Link to comment Share on other sites More sharing options...
UmMusa Posted April 3, 2012 Share Posted April 3, 2012 *hugs* Quote Link to comment Share on other sites More sharing options...
Sebastian (a lady) Posted April 3, 2012 Share Posted April 3, 2012 I'm so sorry that you're dealing with this. Sickness is never enjoyable and mystery ailments are even worse, if only because you don't know which way to go with treatment. I hesitate to make guesses, but is a gluten reaction a possiblity? I ask because one of the families in our coop spent several months trying to figure out what was wrong with their young teen daughter, including scans for juvenile arthritis. She was struggling to function and was down to using a wheelchair. Eliminating gluten seems to have eliminated most of her symptoms. Quote Link to comment Share on other sites More sharing options...
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