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| | | From: artmeat (Original Message) | Sent: 1/2/2009 10:07 PM |
Hey kiddo... how are you? Please let me know- apt999@hotmail |
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yeah I'm actually wondering about Lyme. Thanks for info Fluff and Becca. I just remember when I was a teen how I got so tired for a while and would like sleep for 24 hours sometimes. But nothing quite like that ever happened and the thing that freaked me the most was the balance. Just not being able to hold onto stuff and stumbling everywhere. and the close your eyes and stand or heel toe tests forget it. I think Lyme usually gives a low grade fever and I haven't had a fever since last year when the flu was going around. I don't really get fevers but once a year if that. Rarely get a cold other than occasional sinus crap. I feel crappy at PMS but what chic doen't. I did live next to the woods my whole life aside from now though. I could have gotten bitten a long time ago and it just slowly started messing with me and is really affecting me now. And just how fast that hit me and stayed doing different neuro things was odd. Not to be gross but when I couldn't pee I really thought uti or stone. I remember past 6-8 months I had stuff fall asleep alot and electricity feelings, weird light things or brief blurriness in my vision but I didn't think much of it until I reflected. I even asked family recently if it was normal for things to fall asleep a lot and was told not unless you have the body part pinched or are immobile for quite some time, and it just happened while sitting or standing there. I just didn't put stuff together I guess. I thought that was from being tired or smoking. I hate going to the doctor. A couple other personal things happened that I look up in relation to lyme and don't find. But weird things affect people differently. I have a second cousin with MS and an uncle I never met had parkinsons. One gramma had a brain aneurism and the other gramma had dementia so it seems like a lot of neuro things around and that concerns me. But one thing is another uncle has vit b12 deficiency from anemia and had to get shots every month, so that might be possibility. sheesh I dunno but will definately find a specialist that knows whats up with lyme. I read something that peole get dx with other stuff like fibromyalgia or chronic fatigue and really have lyme. I'm gonna call neuro next week if they don't call and see if he went over spine mri yet. Thanks. for listening and everything  |
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thanks sass. I looked that up but it said something about having strokes and I asked neuro if I had a stroke. He said there is no sign of stroke and it would have given a big flair. And sit aid something about migraines which I don't get. I get occasional head pains but very brief, and only occasional mild headaches but it's not not very typical with me. |
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White spots on the brain are funny things. No one knows for sure what they are. 6 years ago, I had numbness and tingling in my entire left side. It had been going on for a week then one morning I got up and fell. I had no strength at all in my left side. After a series of CT scans, MRI's, the neuro said I had MS. However, the spinal tap said no MS. After a few months, the numbness and tingling went away. In May of this year, the numbness and tingling came back. After a battery of tests including more CT scans, MRI's and a needle thingy testing reflexes in my arm, it showed that I have a possible pinched nerve in my neck and more white spots on my brain that they said were more consistent with mini-strokes than MS. Nothing was ever done, except for a suggested diet and meds for high cholesterol and high blood pressure. Here it is January and I still have the numbness, tingling, and weakness. |
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I really don't want to pound the Lyme thing home at all, but since I told you I'd try to get more information from someone who knew first-hand, I'll let you see what Darlene wrote in response. Ty.... Sass and Becca and I surely have no idea... but we, and everybody in here wants you to get this figured out and get well and be safe as soon as possible. As far as your friend with mysterious symptoms...bless her heart! A lot of it sounds like Lyme, but I'm not a doctor. It sounds like she could have an autoimmune thing going on, and we have learned a lot of that is due to the diet. Stef was seen at the LaValle Metabolic Center here in Cincinnati as they treat a lot of Lyme patients. She again was told to stay on her no sugar, no gluten, no yeast diet to repair her gut that is leaking food particles and causes the body to build antibodies which fight as if the hormones the body makes is a foreign substance, hence the autoimmune reaction. It whacks out the entire endocrine system so Stef has problems with neuro, achy joints, low thyroid, female hormones, sleep hormones, adrenal gland production, etc. Her immune system is next to zero still. They are going to help her get regulated but she continues to see the Lyme specialist in Missouri for the antibiotic regime she adheres to. There are no Lyme doctors in this area. They will test for Lyme at this center and if she can travel up here, the phone number is 513-924-5300. Again it is quite pricey for an initial visit and mostly it is not covered by insurance. It gave us a little more peace of mind with Stef because what they say makes the most sense of all we have been told about Lyme. We also had an appt. there with the nutritionist/dietician for help with her stringent diet restrictions. Last night I went out and bought a vegan recipe book and a no gluten, no sugar cookbook to help Stef out. I also ordered the book The Lyme Solution by Ken Singleton. It was recommended by the Lyme doctor. Tell her I said good luck....probably the most important thing for her to get under control is her sleep because the body can't repair itself if it can't get into that deep sleep cycle at night. Let me know if I can help her in any way with information. |
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((((((((((TyDy)))))))) I hope you get this all sorted out soon. |
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sass, are you ok though/ I mean did it come and go or leave some things lingering like cognitive stuff, thinking clearly, remembering and so forth. Here lately I walk around the house almost lost and am having trouble remembering stuff since. I am moody too and unbelievably tired. right now I am wondering what the fuck posessed me to spill all this shit. I usually keep to myself. I guess we all have breaking points or something and time when we are looking for answers and a prayer I guess. Fluffy I am definately going to look into Lyme but I guess you gotta fine a lyme literate md, as other docs don't do all the co-tests or proper ests. The sleep thing I agree with you. My sleep is so weird but it actually began before this attack. But now I find myself in that inbetween stage of sleep sometimes, where you can't move and you're sleeping, but kind of awake if that makes sense.  It's odd and definately not something I'm used to. But I could sleep for 10 hours and still be tired. I always used to sleep deeply. Then sometimes I just can't sleep or wake up. this is frustrating and I can't even begin to describe.blah I really don't understand why life is a series of bad tings one after another. I know things can always be worse--- thank god I have a healthy little girl as nothing comes close to that----but it has been one thing after another after another. sometimes I feel I am bad luck or something. I know this sounds like crazy talk, but I'm serious!! I'm 27 and too much so far--- what next? I know I sound depressed and I am, but I wasn't before, even after I had Bella I was so happy and really enjoyed it. I tried to do everything just right and now have a hard time finding enough energy for her or anything and I feel terrible about it. blah. I'm too melancholy to be around as I can totally understand (who the hell wants to be around someone so gloomy) Probably time for me to shush and cool it here unless I have something cheerful to say. email if you want [email protected] |
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(((TY))) I still love the fact you named that precious little girl Bella. You hang in there. So many tests and worries. You are in my heart. Even the thought of nuerological problems is scary. In the past several years I've dealt with some of the symptoms you describe. And the tests - good grief. I won't bore you. Have you had the needles placed on various nerve locations? It sends a little shock and it will give them an idea of how things are functioning with the nerves. The test results confirmed I have (bigword) peripherial poly neoropathy with other big word stuff. I am so techinal - lol. I wish you the best. Bella |
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| This message has been deleted by the manager or assistant manager. |
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No, Ty, nothing has been resolved. I have the numbness/tingling/weakness on my entire left side still...since May. I'm also always tired, my thought process is sometimes slowed and sometimes I stumble over my words. I also have fallen down for no reason over the past few months. It is very frustrating not knowing. Good luck to you and keep us posted. |
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| | | From: artmeat | Sent: 1/5/2009 1:29 PM |
| I think of you alot and am so glad it has subsided some. I'm an atheist but for what ever its worth I'm praying for you. |
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There seems to have been a mix up at the Dr. While he was on holiday \vacation I got tired of waiting and wondering so I went to the hospital and got the MRI results myself. Apparently he read the wrong brain MRI report. He was also seeming to be in a big hurry tpo leave the office for vacation. He said at the time that there were a few pinpricks that were 'normal.' My sis is a nurse , I read it to her and she said he clearly read the wrong damn report because the report states this about my brain. without all the xtra words....the largest lesion is adjacent to posterior aspect of the body of the right lateral ventricle and is ill defined and measures 9 mm ovoid in configuration..... within the right parietal corona radiata..... 2 rounded foci one measuring 2 mm one measuring 3 mm...... 2 mm focus of abnormal signal within left frontal white matter..... ...one additional lesion within parietal white matter within left hemisphere measuring 7 mm lateral to the atrium of left lateral ventricle..... report states "white matter signal changes are described above. these could be significant in a patient of this age and clinical correlation with regards to the possibility of multiple sclerosis or other demyelinating diseases is recommended." so it is multiple sclerosis or lyme as the really only possibilities here from what I am reading. anyone here in the medical field? this sucks |
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Ty have you had a spinal tap yet? |
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| This message has been deleted by the manager or assistant manager. |
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The funny thing about those white spots....it is basically an abnormality on the brain. It could be MS, Lyme, stroke, CADASIL, who the hell knows! My first set of testing years ago, I had 4 spots. Now I have 8. The brain is a funny thing and as Carole can tell you, all neuro problems are hard to diagnosis. Basically they can rule out stuff but not really diagnosis. Most MS comes and goes. Your symptoms may go away soon and never come back or may come back in 20 years. I don't know anything about Lyme. I was told in the beginning that my white spots were consistent with MS. Then she did a spinal tap and said there is no abnormality in the brain fluid. My recent MRI she said the spots are not consistent with MS. My friend above, has white spots and after undergoing genetic testing (among all other tests) they decided CADASIL is her problem. She hasn't had any symptoms in 2 years though. She is fine now. All I can say is yes, I know it is frustrating feeling the way you feel. Believe me, I know. And it sucks there is no immediate answer and fix. Just do what they say and enjoy your daughter. Don't sweat the small stuff! |
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Ok well now my post is going to sound all screwy because I deleted it above (#21) and Sass was responding in part to it. LOL... but I messed up that post pretty bad, so I'm starting over. Just read your update this morning, Ty... also, I deleted my message #17, but I sent it to you in email so you see could what I wrote, but with this last update I felt it didn't pertain to this thread so much anymore. So... respond if you'd like to in email, or not... Even with the scary wording of your test result, you still can't jump to any conclusions and I'm surprised Sass didn't try to reassure you a little more on that count right away...  Sass. I know she told you a little about her ordeal in message #11... she was essentially led to believe that it was definitely MS before further testing concluded otherwise. So please... don't let that MRI rattle you too much. It may very well turn out to be something you haven't thought about yet, something very managable and I really hope you can try and relax a little. Please continue to keep us updated and if you'd like, my friend Darlene who I talked about on this thread would be very happy to hear from you and help you since she has been down a similar path for years with her daughter's testing and eventual diagnosis. I think she would be a great source of support for you since she's so knowledgeable about these kinds of tests and procedures. Her daughter was also misdiagnosed with MS and a couple of other things before it was concluded that she had Lyme. She wouldn't mind corresponding with you at all regarding the nature of these tests and I assure you, she's one of the smartest and most proactive people I know in terms of finding information. If nothing else, she could certainly help you with what questions to ask, which is vitally important, and probably refer to you to some great sources of information right away online. She's extremely persistent in finding answers... so I hope you'll consider talking with her. She's a wonderful, funny , compassionate person and I think you'd do great to get her advice. Let me know and I'll send you her address, or have her write to you. |
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