Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 When I got my first check and also the kids they all were nice checks because of the back pay. We made good use of the money. My oldest around that time started on his braces and I was able to pay for all of his dental fee's from that money. I keep good records on how the kids money is spent. I also keep good info on our yearly medical expensive's and with what both my wife and myself spend each year we have always got more money back on our taxes because of it. My first year with my MS was when we spent the most. I am glad we could claim that on our taxes. Bill Jooly's Sharon Marsden wrote: I was also approved for SSDI the first time I applied. I had a phone interview and was told then how much I would be getting and on what date each month. I was surprised and ask if I was approved then? The interviewer said I would get a formal approval letter but there shouldn't be any problems. And she was right. I followed that video tape the group here has to loan out by the former SSDI judge. I also get long term disability from my employer as well as SSDI. Thank goodness for that job! Having that money has certainly made all of this so much easier. Sharon MS-Bill wrote: Hi I was wondering did your insurance question you a lot when your doc had you go on Avonex? Avonex is expensive and it surprises me with you not having a diagnosis. When my MS hit me in Aug of 99 I had no idea what MS was either and I did like you are now trying to learn as much as I could. Since getting my MS I NO longer have any balance so I use a walker all the time. I also have bladder trouble with my MS. I was employed by Lockheed- and I used their short term and long term disability. I am still on their long term. I am also on Social Security. I was told by the people paying for my long term that I needed to apply for Social Security. I was accepted my first time which really surprised me. When you have kids like you do if you are accepted not only you get Social Security pay but also your kids will also. They know you have to your kids to support so you get that to help out. They get Social Security pay until they are 18. I had gone to a local MS group for a while and one thing I learned was that as soon as you become ill you need to go ahead and apply for Social Security. In fact I think you should do it now. because when you apply for Social Security their is a waiting period before you will be looked at by them. The good thing about applying as soon as you become ill is that if they can determine you could were ill enough when you applied to receive funs at that time and you are accepted you will probably get back pay to that point when you applied. Your kids will also get back pay. This MS is very unpredictable because you may feel good for a while and then have your MS troubles hit you out of the blue one day. I often have day's when I feel why am I still just sitting around home? and then I get those bad spells and then I am very happy at that point to have it. I am sure with my MS I would probably have to go from job to job not knowing if my health would hold out long enough to make it worth my while. I have always enjoyed working so the Social Security and also getting disability funds from Lockheed has been a big help to my family. I hope all this makes since Bill Damron wrote: I already love this group! Thank you for responding. As to your first question, no I don't really like my neurologist. I was referred to her by my opthamologist. (sp?) I have applied for my SSDI, but obviously that takes time. I can extend my short term, but my salary will drop to 60%. I asked her about doing this, and she said I needed to return to work, that it was the best thing I could do. Now, let me explain something here. I work at a level 6 SUPER maximum security prison, dealing one on one with inmates who have shown to be problematic at lower level maximum security prisons. It is a very stressful job to say the least. And as you said, I was having some not so clear thinking days myself, and my vision was severely impaired after my episode with optic neuritis. The vision has not returned completely yet. I had deadlines that I was missing at work, was not able to think clearly, see clearly, remember things clearly, was consistently fatigued, and I felt it was dangerous for me to work. I tried to explain this to her, but she just kind of brushed it off, and said I needed to go back to work, and talk to my supervisors about "modifications" that could be made to accommodate me. I personally do not think that any accommodations could be made to enhance my safety and the safety of those around me, given my line of work. I'm embarrassed by this, because I honestly did love my job prior to becoming "ill" for lack of a better term. I noticed gradual changes at first, but chalked them up to stress, getting older, being scatter brained, etc. Then when the ON set in, I went to my local ophthalmologist, who explained to me the relation between ON and MS. I live in an extremely rural area, and our health care locally, well just sucks, basically. So he referred my to another ophthalmologist/neurologist (6 hours away at UVA) Who AGAIN explained the probability that MS was the likely cause. He did several tests of my eyes, and ordered an MRI and referred me to a neurologist that was also at UVA (6 hours away from home). So I went to see her, she looked at the MRI, did a neurological exam, started me on Avonex and told me to come back in 3 months that she wanted to do another MRI of the spinal cord area. So a few weeks before my appt. I called to see if I could come early and have the MRI so I could see her after that and save me another trip. Her office staff said no. So, I went up there again about 2 weeks ago, she did another neurological exam, and scheduled the MRI and evoked potential tests for next month. which means ANOTHER trip to UVA. She asked me if I was having any other "neurological symptoms"....now I'm not a neurologist, and I was dumbfounded. I thought she should have asked me more specifically, but anyway I don't do good in Doctors appointments, I get nervous and emotional, and feel like very ignorant. I did manage to get across to her about the leg pain, and she prescribed baclofen. I am considering switching neurologists, and have looked into going to Wake Forest in NC. But I hate to switch up in the middle of everything, but I also realize how important it is to have a good relationship with your doctor. And she really does not impress me. I have looked at a few of the links on the home page, and I like your idea of the journal. I will start that immediately. Thank you so much for responding. ~ ----- Original Message ----- From: Sharon Marsden To: MSersLife Sent: Thursday, June 01, 2006 7:46 PM Subject: Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening. ~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 I don't mean to sound like a dummy, but my husband and I never do the "itemized" thing on our taxes. What exactly is it you can claim on your taxes. Because I know with all the tests that I've had done and have scheduled in the coming weeks (2 MRI's; Cystometrogram (sp?) cystoscopy, 2 CT scans, evoked potentials, probably more) and my Avonex ($200 per month) plus I'm on 5 other daily meds, the expenses are becoming mountainous! It certainly would be nice if we could get some sort of tax break on all this. It's funny, too, because my daughter is scheduled to have oral surgery and will probably have to have braces still after that for a deformity of her jaw and some of her teeth. She's 15, and thankfully their all back teeth, so it isn't noticeable, but it causes her a lot of pain. We're in the process of buying a new home, and we have closing costs coming in the next few weeks and have spent $3,000 the last two months on land preparation for the new home (it's a double-wide, no white trash jokes please! ) So needless to say we haven't had the money to get her teeth fixed. I feel horrible for that, but we plan on it as soon as the mess with the home is over with, it sure would be nice to get some back pay for her to help with that! ~ Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 yeah, actually, there is one very close by. I haven't started attending meetings yet, I have become quite the recluse, and I know that isn't healthy for me, and I need to start going. My husband is really encouraging me to attend the meetings, and I have been invited, but I'm nervous that I will break down and start crying or something and I'm nervous about seeing people that have progressed and become severely disabled, kind of like it would be looking into a crystal ball or something. Is that horrible of me or what?? I feel so guilty for saying that out loud. I hope I didn't offend anyone. I haven't registered with the NMSS, I didn't know about registering with them. I applied about a month ago for my SSDI, my primary care physician said he will assist me, and I think my urologist will also, as he is a family friend. I'm just concerned about my neuro. I know from what I've read it seems the MS society is all about keeping people in the work force and forcing employers to "accommodate" MSers, and that's all fine and good, if the accommodations allow for the MSers to be able to work, but with the symptoms that are preventing me from working, I don't see that any accommodations could be made. I haven't taken the decision to file for SSDI lightly, I have always enjoyed working and was proud of myself and the job I did. I always felt like I had to "prove" myself to people. I was a "teen mother" I had my daughter when I was sixteen. I was hell bent and determined not to become a "statistic" and rely on the "system" to support me and my daughter. So I worked 3 jobs and went to college full time, graduated with honors, got a good job and beat the odds. Now I feel like I'm having to give all that up and that it was all for nothing. I know I set a good example for my daughter, and what with so many people abusing the system and abusing SSDI, I don't want her to look at me that way. I know in my heart that I have given this a lot of thought, and do not feel that returning to work is an option at this point. I do not think that I am physically or mentally capable of doing it at this point. I have an appointment with a therapist this coming week to help me deal with all of this, because being the proud person that I am (was) I am having a difficult time accepting my limitations now. Wow, I didn't mean to ramble, and that was the first time I have expressed all of that in words, that felt really good! Again, I love this group! ~ Re: New member Hi : You have a lot of questions and I'll try to answer some of them for you. But I'll ask you some, too First let me ask you if you like your neurologist? It sounds as if your neuro is very cautious. That's not a bad thing but right now it sounds like you are in need of something more concrete, especially in light of your short term disability running out soon. Do you plan to apply for Social Security Disability (SSDI)? If so, have you asked your doc if she will fill out forms for SSDI? Yes, call your neuro every time your leg goes numb. Call every time something happens. The doctor needs to know when things happen so she can document. You need to help her by letting her know what's going on. You should keep a journal of symptoms, when they happen and how long it lasts. For example, if your left leg goes numb and your right arm tingles you should log it in your journal. My neuro said he wanted to know if symptoms happened on opposite sides. I can't remember why right now though. But it means something to a good neuro. You said you have "bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss...". So if it's coming in "bouts" you may be experiencing short exacerbation. Or do you mean it comes and goes within the day? Document what is happening and call the doctor so she can document it too. Let the doc know when things happen. It may help you get a diagnosis sooner. My evoked potentials didn't show anything. And my lumbar puncture was positive on only band. My neuro based my diagnosis on my brain MRI, the LP results, and the documentation. I'm sorry I'm having a hard time explaining myself today (it's not a clear thinking day). If you haven't already already looked through the "files" and "links" on the group homepage then I would encourage you to do so. There's some great info there. I'm glad you found us! Sharon pebbles1175 wrote: Hello, everyone! My name is and I just signed up to this group. I was "unofficially" diagnosed with MS in December of '05. I presented with an episode of optic neuritis, and was sent by my opthamologist to a neurologist where an MRI was done. Seven brain lesions were found, and I was started on Avonex in January. I am 32 years old with 2 children and a step child. I used to work full time, but since February, I have been off on "short term" disability. I have until July to return to work before this benefit offered through my work place expires. I hope to find support here from others going through the same thing. I get so frustrated because my neurologist won't come right out and say that I have MS, just that I have "presented with one episode and have MRI consistent with MS and I am at high risk for developing MS within 5 years" She has ordered another MRI next month, along with a test called "evoked potentials" and she said possibly after that she will do a lumbar puncture. I have gorged myself on information, and I do believe that I have MS, and am frustrated because noone will give me an "official" diagnosis until I have another "exacerbation" or the MRI and evoked potentials show something. But what exactly IS an "exacerbation" or an "episode"? I have bouts of debilitating fatigue, leg pain, leg cramps, numbness, tingling, memory loss, you name it. But this is everyday. Are these exacerbations or what? Do I call my doctor everytime my leg goes numb? She prescribed my something alled baclofen, which according to the information, is a medication used for MS. I'm on Avonex, which is for MS, so why won't she just tell me I have MS??? I have suffered severe depression and was placed on medication and am seeing a therapist. I have periods where I get so dag gone angry and frustrated. I didn't mean to ramble, just wanted to brief everyone on myself and my situation. I hope this group will be a place where I can find some one who understands, because, as much as my family tries, I get frustrated because they just don't understand. Thank you for listening.~ Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Sharon (MSersLife creator/owner) Bloom where you are planted..... Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 Golly, Bill, It amazes me how familiar everything you say sounds. I am a chronic worrier (always have been) and I worry and feel guilty that our lifestyle will have to change drastically if I do not get approved, since my position will be filled next month if I do not return. My husband has a decent job also, and we by no means live an extravagant lifestyle, we are very modest people who struggle like most to make it. I hope and pray that I do get approved, and I still worry that if I do, my daughter is already 15 and she will only get money for a few more years and then I will be unable to help her financially like I had hoped to be able to do should she need it. I was just wondering, my son is 9, so when my daughter turns 18, will her funds go to him, because the way they explained it to me, was that the kids get 1/2 of what I get, and their 1/2 gets split equally; so when my daughter turns 18, will my sons funds increase, essentially, will he get his sisters money? Boy he would LOVE that, he'd never let her live that down, not that I would burden them with trying to explain all of this to them, but I could just hear them now!! When I had my phone interview and they calculated my total pay (including the kids funds) and we calculated what my long term disability will pay, I will be bringing home about $50 less than my salary now. (until my daughter turns 18, if my son doesn't pick up her part). I was the same way. When I first got the ON, I had to take off work for about 2 weeks, because I was essentially totally blind in my left eye. My vision returned somewhat, and I returned to work for about 10 days. I was a mess! So I took a couple of weeks off, thinking it was an "exacerbation" or whatever. I was newly diagnosed and was still learning a lot about MS (I thought it was terminal, it was right around the time Pryor died) and I told my co-workers and supervisor that I was going to take some of my vacation time that I needed to get rid of anyway, and then I would return as scheduled. and went to my primary care physician. Thankfully, I have a good relationship with him, and I broke down. He was very supportive and put me on anti-depressants and gave me some time off work. I have used that time to try to educate myself, but sometimes I am like an ostrich and just want to bury my head in the sand and pretend this doesn't exist. But, my body doesn't let me forget for long. After I learned that I wasn't going to die from this, I, too, became very thankful and try to convince myself that I'm actually quite lucky, because really, what are the odds that I'll get some other disease that would be worse, like cancer? (if the statistics are high, please no one tell me, let me live this fantasy for a while ) Anyway, I hope I'm not getting on anyone's nerves, I know my posts are always long, but it just feels so darn good to talk about this and get this stuff off my chest that I've been harboring for so long. Thank you all so much for listening. ~ * Re: New member>>>> Hi :>> >> You have a lot of questions and I'll try to answer some of>> them for you. But I'll ask you some, too First let me>> ask you if you like your neurologist? It sounds as if your>> neuro is very cautious. That's not a bad thing but right>> now it sounds like you are in need of something more>> concrete, especially in light of your short term disability>> running out soon. Do you plan to apply for Social Security>> Disability (SSDI)? If so, have you asked your doc if she>> will fill out forms for SSDI? >> >> Yes, call your neuro every time your leg goes numb. Call>> every time something happens. The doctor needs to know when>> things happen so she can document. You need to help her by>> letting her know what's going on. You should keep a journal>> of symptoms, when they happen and how long it lasts. For>> example, if your left leg goes numb and your right arm>> tingles you should log it in your journal. My neuro said he>> wanted to know if symptoms happened on opposite sides. I>> can't remember why right now though. But it means>> something to a good neuro. You said you have "bouts of>> debilitating fatigue, leg pain, leg cramps, numbness,>> tingling, memory loss...". So if it's coming in "bouts" you>> may be experiencing short exacerbation. Or do you mean it>> comes and goes within the day? Document what is happening>> and call the doctor so she can document it too. Let the doc>> know when things happen. It may help you get a diagnosis>> sooner. >> >> My evoked potentials didn't show anything. And my lumbar>> puncture was positive on only band. My neuro based my>> diagnosis on my brain MRI, the LP results, and the>> documentation. I'm sorry I'm having a hard time explaining>> myself today (it's not a clear thinking day). >> >> If you haven't already already looked through the "files" and>> "links" on the group homepage then I would encourage you to>> do so. There's some great info there.>> >> I'm glad you found us!>> >> Sharon>> >>>> */pebbles1175 /* wrote:>>>> Hello, everyone! My name is and I just signed up to>> this group.>> I was "unofficially" diagnosed with MS in December of '05. I>> presented with an episode of optic neuritis, and was sent>> by my>> opthamologist to a neurologist where an MRI was done.>> Seven brain>> lesions were found, and I was started on Avonex in>> January. I am 32>> years old with 2 children and a step child. I used to>> work full>> time, but since February, I have been off on "short term">> disability. I have until July to return to work before>> this benefit>> offered through my work place expires. I hope to find>> support here>> from others going through the same thing. I get so>> frustrated>> because my neurologist won't come right out and say that>> I have MS,>> just that I have "presented with one episode and have MRI>> consistent>> with MS and I am at high risk for developing MS within 5>> years" She>> has ordered another MRI next month, along with a test>> called "evoked>> potentials" and she said possibly after that she will do>> a lumbar>> puncture. I have gorged myself on information, and I do>> believe that>> I have MS, and am frustrated because noone will give me>> an "official" diagnosis until I have another>> "exacerbation" or the>> MRI and evoked potentials show something. But what>> exactly IS>> an "exacerbation" or an "episode"? I have bouts of>> debilitating>> fatigue, leg pain, leg cramps, numbness, tingling, memory>> loss, you>> name it. But this is everyday. Are these exacerbations or>> what? Do I>> call my doctor everytime my leg goes numb? She prescribed my>> something alled baclofen, which according to the>> information, is a>> medication used for MS. I'm on Avonex, which is for MS,>> so why won't>> she just tell me I have MS??? I have suffered severe>> depression and>> was placed on medication and am seeing a therapist. I>> have periods>> where I get so dag gone angry and frustrated. I didn't>> mean to>> ramble, just wanted to brief everyone on myself and my>> situation. I>> hope this group will be a place where I can find some one>> who>> understands, because, as much as my family tries, I get>> frustrated>> because they just don't understand. Thank you for listening.>> ~>>>>>>>>>>>>>>>>>>>>>> *_Sharon_ (MSersLife creator/owner) *>> *Bloom where you are planted..... *>> ------------------------------------------------------------------------>> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone>> calls. Great rates starting at 1¢/min.>> <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com>>>>>> <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 This is a good place to talk about your concerns about your health. This MS treats everyone differently so when you ask a question you may get several answers. You are right about the funds your daughter get will eventually be your daughters when she becomes 18. I am not sure how all that works out but you are correct. If you do finally get diagnosed with MS Darlene in this group her daughter got a $3000 scloroship through the National MS Society. I want to check into that when my son graduates. My first year with my I went to mow my yard, I have no balance now but I can still use our riding mower ok. I made a big mistake mowing on a very warm day here in Indiana. I did not know at that time heat was so bad to my MS. My eyes were really effected and at that time I found just becoming cooler helped my eyes out a lot. Last summer I spent a little too much time in the sun and I wound up with double vision. I figured it would clear up easily but it didn't. My neurologist wasn't too happy I did not tell him sooner. He had me go through 2 different Steroid treatments. The first one did not help so he had me do the second one with a different kind of steroid. I also have type 1 diabetes so some of my trouble may have been from it. My Double vision did finally clear up but it took 8 months to do so. I am still not sure if the steroids helped or if it just went away on it's own. My wife is here with lunch so I may send more info later. Bill MSdiabetes My web page Damron wrote: Golly, Bill, It amazes me how familiar everything you say sounds. I am a chronic worrier (always have been) and I worry and feel guilty that our lifestyle will have to change drastically if I do not get approved, since my position will be filled next month if I do not return. My husband has a decent job also, and we by no means live an extravagant lifestyle, we are very modest people who struggle like most to make it. I hope and pray that I do get approved, and I still worry that if I do, my daughter is already 15 and she will only get money for a few more years and then I will be unable to help her financially like I had hoped to be able to do should she need it. I was just wondering, my son is 9, so when my daughter turns 18, will her funds go to him, because the way they explained it to me, was that the kids get 1/2 of what I get, and their 1/2 gets split equally; so when my daughter turns 18, will my sons funds increase, essentially, will he get his sisters money? Boy he would LOVE that, he'd never let her live that down, not that I would burden them with trying to explain all of this to them, but I could just hear them now!! When I had my phone interview and they calculated my total pay (including the kids funds) and we calculated what my long term disability will pay, I will be bringing home about $50 less than my salary now. (until my daughter turns 18, if my son doesn't pick up her part). I was the same way. When I first got the ON, I had to take off work for about 2 weeks, because I was essentially totally blind in my left eye. My vision returned somewhat, and I returned to work for about 10 days. I was a mess! So I took a couple of weeks off, thinking it was an "exacerbation" or whatever. I was newly diagnosed and was still learning a lot about MS (I thought it was terminal, it was right around the time Pryor died) and I told my co-workers and supervisor that I was going to take some of my vacation time that I needed to get rid of anyway, and then I would return as scheduled. and went to my primary care physician. Thankfully, I have a good relationship with him, and I broke down. He was very supportive and put me on anti-depressants and gave me some time off work. I have used that time to try to educate myself, but sometimes I am like an ostrich and just want to bury my head in the sand and pretend this doesn't exist. But, my body doesn't let me forget for long. After I learned that I wasn't going to die from this, I, too, became very thankful and try to convince myself that I'm actually quite lucky, because really, what are the odds that I'll get some other disease that would be worse, like cancer? (if the statistics are high, please no one tell me, let me live this fantasy for a while ) Anyway, I hope I'm not getting on anyone's nerves, I know my posts are always long, but it just feels so darn good to talk about this and get this stuff off my chest that I've been harboring for so long. Thank you all so much for listening. ~ ----- Original Message ----- From: MS-Bill To: MSersLife Sent: Friday, June 02, 2006 7:24 PM Subject: Re: New member If you would happen to be able to get on Social Security the money the kids end up getting is a big help. My wife Judy and I are in the same boat My income dropped just like your does. My wife is a Social worker and I am glad she has a good job. We to didn't want my MS to effect our income much. We have learned to adjust. I was so new to this MS I told everyone I worked with I would be back soon. I was treating this MS like it was a cold or something. I am always very thankful I have this and not some terminal disease. Bill Damron wrote: > No, my insurance didn't really question me a lot. I had to fill out a > lot of paperwork, but the Avonex support people were great helping > with that. Our insurance has 3 tiers, though, and naturally, the > Avonex was the 3rd tier which means I have to pay 20%, which equals > $200 per month. I can also go to the long term disability in August, > but like I mentioned before, my salary will drop to 60% and my > position is no longer guaranteed should I have to return to work. I > have already filed for my social security, and I believe my primary > care physician and my urologist will assist me much more than my > neurologist. She's dead set that I should return to work. I know what > you mean about having a good few days or weeks, then BAM! your down > for the count. When I do have the good days, I'm riddled with guilt > because I think that I should be working, but I know that as you said, > it is so unpredictable when I feel okay and when I do not. I have a > hard time even going out in public, because I constantly run into > people I know or worked with and they always ask me how I am and say > how good I look. I always smile and say "I'm good, how are you doing" > because I don't think they REALLY want to know how I am, and I feel > like they're scrutinizing me and looking me up and down feeling as if > I'm "faking" or whatever. I know a lot of this is paranoia on my part, > but I am so self conscious about the whole deal and really would > prefer to be able to work. I'm really disappointed and surprised at my > neurologist for not taking more of an interest in why I felt like I > cant' work. It was like she didn't even want to discuss it, she just > said that my employer would be required to make accommodations for me > to return to work. But, honestly, what accommodations can they make? > Give me a couch in my office so I can lie down when I'm wiped out?? > Have someone read me all the fine print I'm required to read and can't > see? Massage my legs when they cramp? Type out my reports when my > hands don't cooperate like they should? Hand me tissues when I cry? > GET REAL!! What you said does make sense, and thankfully, IF I am > approved for my disability, I will also be able to stay on the long > term disability retirement offered through my job. As I mentioned, I > work(ed) at a prison, so it is a state position, and the benefits are > good in that aspect. I just hope that I am approved. My family could > not make it on my husbands income alone, and my long term will have to > kick in in July, and there goes my position should I have to return to > work. Thank you so much for listening. As I said, I love this group > already. > ~ > > * Re: New member >> >> Hi : >> >> You have a lot of questions and I'll try to answer some of >> them for you. But I'll ask you some, too First let me >> ask you if you like your neurologist? It sounds as if your >> neuro is very cautious. That's not a bad thing but right >> now it sounds like you are in need of something more >> concrete, especially in light of your short term disability >> running out soon. Do you plan to apply for Social Security >> Disability (SSDI)? If so, have you asked your doc if she >> will fill out forms for SSDI? >> >> Yes, call your neuro every time your leg goes numb. Call >> every time something happens. The doctor needs to know when >> things happen so she can document. You need to help her by >> letting her know what's going on. You should keep a journal >> of symptoms, when they happen and how long it lasts. For >> example, if your left leg goes numb and your right arm >> tingles you should log it in your journal. My neuro said he >> wanted to know if symptoms happened on opposite sides. I >> can't remember why right now though. But it means >> something to a good neuro. You said you have "bouts of >> debilitating fatigue, leg pain, leg cramps, numbness, >> tingling, memory loss...". So if it's coming in "bouts" you >> may be experiencing short exacerbation. Or do you mean it >> comes and goes within the day? Document what is happening >> and call the doctor so she can document it too. Let the doc >> know when things happen. It may help you get a diagnosis >> sooner. >> >> My evoked potentials didn't show anything. And my lumbar >> puncture was positive on only band. My neuro based my >> diagnosis on my brain MRI, the LP results, and the >> documentation. I'm sorry I'm having a hard time explaining >> myself today (it's not a clear thinking day). >> >> If you haven't already already looked through the "files" and >> "links" on the group homepage then I would encourage you to >> do so. There's some great info there. >> >> I'm glad you found us! >> >> Sharon >> >> >> */pebbles1175 /* wrote: >> >> Hello, everyone! My name is and I just signed up to >> this group. >> I was "unofficially" diagnosed with MS in December of '05. I >> presented with an episode of optic neuritis, and was sent >> by my >> opthamologist to a neurologist where an MRI was done. >> Seven brain >> lesions were found, and I was started on Avonex in >> January. I am 32 >> years old with 2 children and a step child. I used to >> work full >> time, but since February, I have been off on "short term" >> disability. I have until July to return to work before >> this benefit >> offered through my work place expires. I hope to find >> support here >> from others going through the same thing. I get so >> frustrated >> because my neurologist won't come right out and say that >> I have MS, >> just that I have "presented with one episode and have MRI >> consistent >> with MS and I am at high risk for developing MS within 5 >> years" She >> has ordered another MRI next month, along with a test >> called "evoked >> potentials" and she said possibly after that she will do >> a lumbar >> puncture. I have gorged myself on information, and I do >> believe that >> I have MS, and am frustrated because noone will give me >> an "official" diagnosis until I have another >> "exacerbation" or the >> MRI and evoked potentials show something. But what >> exactly IS >> an "exacerbation" or an "episode"? I have bouts of >> debilitating >> fatigue, leg pain, leg cramps, numbness, tingling, memory >> loss, you >> name it. But this is everyday. Are these exacerbations or >> what? Do I >> call my doctor everytime my leg goes numb? She prescribed my >> something alled baclofen, which according to the >> information, is a >> medication used for MS. I'm on Avonex, which is for MS, >> so why won't >> she just tell me I have MS??? I have suffered severe >> depression and >> was placed on medication and am seeing a therapist. I >> have periods >> where I get so dag gone angry and frustrated. I didn't >> mean to >> ramble, just wanted to brief everyone on myself and my >> situation. I >> hope this group will be a place where I can find some one >> who >> understands, because, as much as my family tries, I get >> frustrated >> because they just don't understand. Thank you for listening. >> ~ >> >> >> >> >> >> >> >> >> >> >> *_Sharon_ (MSersLife creator/owner) * >> *Bloom where you are planted..... * >> ------------------------------------------------------------------------ >> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone >> calls. Great rates starting at 1¢/min. >> <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com> >> > > > <http://us.rd.yahoo.com/mail_us/taglines/postman7/*http://us.rd.yahoo.com/evt=39666/*http://messenger.yahoo.com> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2007 Report Share Posted April 12, 2007 Hello, My Name is Ron and I'm 48 and live in New York. I had a work accident back in 1992 in which I was crushed. Since then I've undergone 15 surgerys, and live with pretty bad pain everyday. I'm real happy that there's a group like this for me to be a part of. I don't get out a lot, and I find these forums very helpful. I'm Looking forward to getting to know some of you and hearing about your lives and how you cope on a daily basis. Thanks for being here, Be well, Ron Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2012 Report Share Posted August 7, 2012 Montee,Does this machine kill bartonella too ?Deepak Sylvia, I had lyme and killed it with a Doug coil machine which is pretty easy to operate.. I built the one I use, but since building that first one, I have built several for friends and others in need of a coil machine. I talked to Stolar and Doug MacLean, the suggested I form a business so I could help people with the illnesses. Our website is www.coilmachinesnw.com, you might look at it. Call or email me if you have any questions.Sincerely, Montee To: Lyme_and_Rife Sent: Tuesday, August 7, 2012 6:52 AM Subject: New member Hello, I'm new to the group and have had chronic Lyme for about 10 years. I was diagnosed in December 2011 and have been on IV abx since January 2012. I really want to get a rife machine but am having great difficulty deciding which one since I don't really understand the differences of all the various types even though Ive read up on them. It's just too complicated! I need something that will be easy to use and understand! That treats lyme and bartonella and other possible co-infections. Any help is much appreciated! Ricci Quote Link to comment Share on other sites More sharing options...
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