Aa
Short term disability insurance problem
Within all this, I have a loving, supportive husband and family (no children). I am very blessed and don't like that I'm complaining but I'm so overwhelmed and confused by all this...
I am 50, female, happily married (almost) 16 years. Am overweight. 8 yrs intermittent symptoms which ganged up on me Sept. 2012 and sent me to PCP. Vertigo, muscle weakness in thighs, balance and coordination issues, vision blurred, esp. left side, sharp pain in eyes, lower back pain, laryngeal spasms, forgetting how to swallow, slurred or halting speech, memory and cognitive problems, jiggling eyes, tingling/cob-webby feeling on skin on thighs, hips, buttocks, spine, face and arms (not unpleasant, just odd), pain, pain in arms and legs... All things that happened intermittently in past but were now all happening at once. I had also started tripping/falling.
PCP ordered MRI Oct. 2012, which showed "moderately severe extent of white matter lesions of mixed subcortical and periventricular distribution... Demyelinating versus ischemic/vascular favored."
2 month wait for neuro #1 (also a cardiologist) who couldn't access my medical records while I was with him for TWO appts but said it was cardiovascular and take 81mg aspirin. EEG was normal. In phone call with his assistant, I asked "what did he think about the MRI? " Call back said, "Significantly more lesions than he was expecting." Fired him.
Neuro #2 said his observations would say no MS but we'll do lumbar puncture. LP showed high IGG and high CNS IGG synthesis rate and commented, "Consistent with demyelinating disease or other ... disease." Dx with MS.
Neuro #2 writes Rx for Copaxone and gives me video to watch. Follow up in one month. Did Internet research and got scared. Didn't start Copaxone. At FU I told him I didn't start Copaxone and why. He said it was probably good as there's a pill just approved and here's a Rx for that. FU in three months. Oh and he dismissed weird constipation and jiggling eye - literally waved his hand and shook his head 'no.' Back home, looked up Aubagio - got scared. Also read manufacturer recommends monthly bloodwork. But wait, my FU is for THREE MONTHS. Fired that neuro and now admit will need to travel to see specialist. 4 month wait for specialist appt.
In May, PCP recommended reduced hours and I compromised on 7.5 per week. HR at work totally supportive. Unfortunately, I'm lucky if I can manage 5 hours a day during the summer. HR had a/c put in my office but rest of the building is a hot brick oven (to me); I get weak just going to restroom and back. Husband drives me to work during hottest weeks.
At first, short-term disability picked up portion of lost hours but one day I got this tightness in my ribs, up to my chest and thought I was having a heart attack. EKG was normal and PCP said it was likely MS. When STD heard about normal EKG, they said I wasn't ill, I wasn't receiving treatment for MS, etc. stopped payments. I am STRESSED. I'm main income and health insurance for retired husband and myself. STD right to appeal. PCP wrote letter telling them they were misinformed about MS and better get specialist to review my file. She again listed symptoms that I've had for years and current, debilitating ones.
Saw specialist in August. Not willing to help with STD paperwork but ordered new tests: MRI, neuropsych test, physical therapy.
Aug. 2013 MRI says: "... previously described moderately extensive within white matter... Some periventricular and pericallosal... There may be new 3mm focal lesion at posterior aspect of inferior medulla at junction with the proximal spinal cord, just to left of midline... Only seen on FLAIR."
Neuropsychiatric test mostly positive but shows "moderately depressed range of functioning... Mild frontal variability and inefficiency... No multi tasking, interruptions, more than one question/person at a time." (That's what my job is all about.) Also said impact from dx affecting me but, as I told her, I am not depressed; just overwhelmed. Lots of strengths which referral to psychotherapist will hopefully help me work with. Neuropsych also recommended part-time which referral should help me with. But again, no active help with appeal.
Started PT who recommended crutch for bad days. This does help with balance and exercises are helping too. Will keep this up as well as exercise bike I already do. Added slow pace, short duration treadmill back to exercises. Had to quit when I started tripping and went bike.
Appeal to STD deadline is Sept. 11. Faxed appeal to specialist. He mailed me copy of his records. His record states: "MRI Oct. 2012... personally reviewed. This does reveal a couple of lesions adjacent to the ventricles, as well as some confluent white matter changes in the deep white matter running up to the juxtacortical region in the frontal lobes bilaterally. They are fairly symmetric. There are also scattered juxtacortical lesions seen... MRI March 2013 did not reveal any evidence of any intrinsic cord lesions."
"Behavior is childish at times" is written. This really irked my husband, who had been with me throughout. Husband said I was tired, balance was off, didn't understand some questions, speech was slightly slurred but mostly stumbling/halting: in short, a bad day. Record also says, "It is very well possible, given her symptomalogy, that she does have MS and is compounded by neuropsychiatric problems as well, which is quite common in MS patients." But Dr. still not saying I have MS? Do I, don't I? FU in 6 weeks.
STD wants records for appeal. I don't know if this record would help or hinder - any thoughts?
I told STD, I don't go to PCP EVERY TIME something happens, or I would be there every day.
I know I can manage 4-5 hrs a day. HR approves but needs SPECIALIST medical request, which only PCP is willing to give. What is happening here? I am so STRESSED by this sometimes I just cry about it (which makes my symptoms worse).
I am so sorry this is so long. I would appreciate your feedback. Thank you all so much.
I am 50, female, happily married (almost) 16 years. Am overweight. 8 yrs intermittent symptoms which ganged up on me Sept. 2012 and sent me to PCP. Vertigo, muscle weakness in thighs, balance and coordination issues, vision blurred, esp. left side, sharp pain in eyes, lower back pain, laryngeal spasms, forgetting how to swallow, slurred or halting speech, memory and cognitive problems, jiggling eyes, tingling/cob-webby feeling on skin on thighs, hips, buttocks, spine, face and arms (not unpleasant, just odd), pain, pain in arms and legs... All things that happened intermittently in past but were now all happening at once. I had also started tripping/falling.
PCP ordered MRI Oct. 2012, which showed "moderately severe extent of white matter lesions of mixed subcortical and periventricular distribution... Demyelinating versus ischemic/vascular favored."
2 month wait for neuro #1 (also a cardiologist) who couldn't access my medical records while I was with him for TWO appts but said it was cardiovascular and take 81mg aspirin. EEG was normal. In phone call with his assistant, I asked "what did he think about the MRI? " Call back said, "Significantly more lesions than he was expecting." Fired him.
Neuro #2 said his observations would say no MS but we'll do lumbar puncture. LP showed high IGG and high CNS IGG synthesis rate and commented, "Consistent with demyelinating disease or other ... disease." Dx with MS.
Neuro #2 writes Rx for Copaxone and gives me video to watch. Follow up in one month. Did Internet research and got scared. Didn't start Copaxone. At FU I told him I didn't start Copaxone and why. He said it was probably good as there's a pill just approved and here's a Rx for that. FU in three months. Oh and he dismissed weird constipation and jiggling eye - literally waved his hand and shook his head 'no.' Back home, looked up Aubagio - got scared. Also read manufacturer recommends monthly bloodwork. But wait, my FU is for THREE MONTHS. Fired that neuro and now admit will need to travel to see specialist. 4 month wait for specialist appt.
In May, PCP recommended reduced hours and I compromised on 7.5 per week. HR at work totally supportive. Unfortunately, I'm lucky if I can manage 5 hours a day during the summer. HR had a/c put in my office but rest of the building is a hot brick oven (to me); I get weak just going to restroom and back. Husband drives me to work during hottest weeks.
At first, short-term disability picked up portion of lost hours but one day I got this tightness in my ribs, up to my chest and thought I was having a heart attack. EKG was normal and PCP said it was likely MS. When STD heard about normal EKG, they said I wasn't ill, I wasn't receiving treatment for MS, etc. stopped payments. I am STRESSED. I'm main income and health insurance for retired husband and myself. STD right to appeal. PCP wrote letter telling them they were misinformed about MS and better get specialist to review my file. She again listed symptoms that I've had for years and current, debilitating ones.
Saw specialist in August. Not willing to help with STD paperwork but ordered new tests: MRI, neuropsych test, physical therapy.
Aug. 2013 MRI says: "... previously described moderately extensive within white matter... Some periventricular and pericallosal... There may be new 3mm focal lesion at posterior aspect of inferior medulla at junction with the proximal spinal cord, just to left of midline... Only seen on FLAIR."
Neuropsychiatric test mostly positive but shows "moderately depressed range of functioning... Mild frontal variability and inefficiency... No multi tasking, interruptions, more than one question/person at a time." (That's what my job is all about.) Also said impact from dx affecting me but, as I told her, I am not depressed; just overwhelmed. Lots of strengths which referral to psychotherapist will hopefully help me work with. Neuropsych also recommended part-time which referral should help me with. But again, no active help with appeal.
Started PT who recommended crutch for bad days. This does help with balance and exercises are helping too. Will keep this up as well as exercise bike I already do. Added slow pace, short duration treadmill back to exercises. Had to quit when I started tripping and went bike.
Appeal to STD deadline is Sept. 11. Faxed appeal to specialist. He mailed me copy of his records. His record states: "MRI Oct. 2012... personally reviewed. This does reveal a couple of lesions adjacent to the ventricles, as well as some confluent white matter changes in the deep white matter running up to the juxtacortical region in the frontal lobes bilaterally. They are fairly symmetric. There are also scattered juxtacortical lesions seen... MRI March 2013 did not reveal any evidence of any intrinsic cord lesions."
"Behavior is childish at times" is written. This really irked my husband, who had been with me throughout. Husband said I was tired, balance was off, didn't understand some questions, speech was slightly slurred but mostly stumbling/halting: in short, a bad day. Record also says, "It is very well possible, given her symptomalogy, that she does have MS and is compounded by neuropsychiatric problems as well, which is quite common in MS patients." But Dr. still not saying I have MS? Do I, don't I? FU in 6 weeks.
STD wants records for appeal. I don't know if this record would help or hinder - any thoughts?
I told STD, I don't go to PCP EVERY TIME something happens, or I would be there every day.
I know I can manage 4-5 hrs a day. HR approves but needs SPECIALIST medical request, which only PCP is willing to give. What is happening here? I am so STRESSED by this sometimes I just cry about it (which makes my symptoms worse).
I am so sorry this is so long. I would appreciate your feedback. Thank you all so much.
Thank you for your support, Lulu. I really appreciate it.
The goods news is the STD reversed their decision without any input from the "specialist," so that's one worry off my mind. Thank you, God!
Bad news is the specialist won't discuss his comments until the follow up appt. in October. Oh we'll. perhaps this o e is just over cautious and may turn out to be good. But I'm just not sure any more. We'll see.
Hope you are well.
The goods news is the STD reversed their decision without any input from the "specialist," so that's one worry off my mind. Thank you, God!
Bad news is the specialist won't discuss his comments until the follow up appt. in October. Oh we'll. perhaps this o e is just over cautious and may turn out to be good. But I'm just not sure any more. We'll see.
Hope you are well.
Thank you so much for your time.
It hadn't occurred to me that it would be part of the permanent record! It does make difference as you say. I was offended when I read it and my husband more so. As I said, he had been there with me and saw nothing 'childish' or even child-like unless you count asking for a question to be repeated (it was a bad day and I was so tired).
When MS became a possibility, my husband and I agreed we would be gently but brutally honest - I want to know if I act inappropriately! This is even more important to us because my husband had a friend die of MS complications 30 years ago, one of his brothers died of ALS 5 years ago and his only other brother is dying of myelitis (last stages).
My poor beloved has enough grief. So he is very honest with me, with doctors: he wants the best care for me and that means being honest about what is going on.
Again, I thank you for your time and insight. It is valuable to me.
Blessings.
It hadn't occurred to me that it would be part of the permanent record! It does make difference as you say. I was offended when I read it and my husband more so. As I said, he had been there with me and saw nothing 'childish' or even child-like unless you count asking for a question to be repeated (it was a bad day and I was so tired).
When MS became a possibility, my husband and I agreed we would be gently but brutally honest - I want to know if I act inappropriately! This is even more important to us because my husband had a friend die of MS complications 30 years ago, one of his brothers died of ALS 5 years ago and his only other brother is dying of myelitis (last stages).
My poor beloved has enough grief. So he is very honest with me, with doctors: he wants the best care for me and that means being honest about what is going on.
Again, I thank you for your time and insight. It is valuable to me.
Blessings.
The childish comment - sorry I got that wrong - borders onbeing demeaning and I am not sure that is a medical diagnosis. If I didn't have to submit that, I don't think I would. I I had to use that document, I would go back to the doctor and ask for further clarification of that comment so that it can't be misinterpreted.
For example - was it meant that your mental faculties are diminished or did it imply your behavior was childish - like having a temper tantrum to get your way? There is a huge difference and I would want the doc to clarify its meaning before it becomes a part of your permanent medical record for STD.
You need to have a doctor you are comfortable with.
I asked about therapy because on the record you are on no drug and who knows how you would be doing if you had taken the Copaxone or Aubagio rx as neuro #2 offered. That might be a key point with STD as well - they can say you need to try something first. Whether or not to take these drugs is a very personal choice, but the reasons why don't show up on our records.
I hope this helps - I am sorry you are going through this.
For example - was it meant that your mental faculties are diminished or did it imply your behavior was childish - like having a temper tantrum to get your way? There is a huge difference and I would want the doc to clarify its meaning before it becomes a part of your permanent medical record for STD.
You need to have a doctor you are comfortable with.
I asked about therapy because on the record you are on no drug and who knows how you would be doing if you had taken the Copaxone or Aubagio rx as neuro #2 offered. That might be a key point with STD as well - they can say you need to try something first. Whether or not to take these drugs is a very personal choice, but the reasons why don't show up on our records.
I hope this helps - I am sorry you are going through this.
Thank you, Lulu.
I think I was asking two questions but not being clear on either of them.
1. Should I submit a record that has "behavior is childish (not child-like but childish) and never actually states I have MS but very well could have (although from other postings I've seen, I think the MRIs and CNS show I do). Does anyone have experience with this and do you think this kind of report would harm an insurance claim?
2. Should I again search for a different MS specialist? I'm not sure about this one either! I want to be treated as a whole person; unfortunately that means at the moment I'm dealing with STD Insurance, and THIS person needs help.
Benefits are a huge concern. I filed FMLA when my hours were reduced and HR assures me I would continue to be classified as full-time with medical accommodation. I am determined to remain active, hopeful and working (at least part time).
I'm not taking DMD because I wanted to see a specialist. The only mention he made of Rx is that I haven't started medication prescribed by previous neuro. No mention of why and lack of information given to me and WHY I should take this drug. Equally, specialist did not recommend drug (we assumed he wanted all the tests done first before discussing DMD). Which goes back to do I look for someone else? (There aren't many in my area or in my health plan network.)
Feel lost in 'the process'; like I'm not a person.
Thank you for your time and comments. I hope you are well.
I think I was asking two questions but not being clear on either of them.
1. Should I submit a record that has "behavior is childish (not child-like but childish) and never actually states I have MS but very well could have (although from other postings I've seen, I think the MRIs and CNS show I do). Does anyone have experience with this and do you think this kind of report would harm an insurance claim?
2. Should I again search for a different MS specialist? I'm not sure about this one either! I want to be treated as a whole person; unfortunately that means at the moment I'm dealing with STD Insurance, and THIS person needs help.
Benefits are a huge concern. I filed FMLA when my hours were reduced and HR assures me I would continue to be classified as full-time with medical accommodation. I am determined to remain active, hopeful and working (at least part time).
I'm not taking DMD because I wanted to see a specialist. The only mention he made of Rx is that I haven't started medication prescribed by previous neuro. No mention of why and lack of information given to me and WHY I should take this drug. Equally, specialist did not recommend drug (we assumed he wanted all the tests done first before discussing DMD). Which goes back to do I look for someone else? (There aren't many in my area or in my health plan network.)
Feel lost in 'the process'; like I'm not a person.
Thank you for your time and comments. I hope you are well.
Millipede,
I just read your story and I appreciate all the details. You paint a picture that many here can relate to - unclear medical care that can't quite get it together on our behalf.
Do I gather that you are not taking any drug for your MS - at least not a disease modifying agent? That would concern me because we know MS is always active and just waiting on chance is not such a good choice.
I am pleased to hear your employer will accomodate your change in hours, but how does that reflect in your benefits? At some point, you will no longer be a full-time employee, so please be careful aboutdropping below that mark without realizing it.
Everyone with MS has some sort of neuropsych problem - it comes from living with a chronic disease. It's what we do with those problems that is important. I would ask for clarification as to what the examiner thought was childlike. Dementia or Alzheimers can cause that type of emotional regression but MS it is not usually thought of as childlike.
I'm not quite sure what your question is here and I think you needed to just get this all out there. It is so disheartening to read the path you have been on without having a clear understanding as to what is wrong.
Stay in touch, ok? And be sure to ask all the questions you might think of.
~Laura
I just read your story and I appreciate all the details. You paint a picture that many here can relate to - unclear medical care that can't quite get it together on our behalf.
Do I gather that you are not taking any drug for your MS - at least not a disease modifying agent? That would concern me because we know MS is always active and just waiting on chance is not such a good choice.
I am pleased to hear your employer will accomodate your change in hours, but how does that reflect in your benefits? At some point, you will no longer be a full-time employee, so please be careful aboutdropping below that mark without realizing it.
Everyone with MS has some sort of neuropsych problem - it comes from living with a chronic disease. It's what we do with those problems that is important. I would ask for clarification as to what the examiner thought was childlike. Dementia or Alzheimers can cause that type of emotional regression but MS it is not usually thought of as childlike.
I'm not quite sure what your question is here and I think you needed to just get this all out there. It is so disheartening to read the path you have been on without having a clear understanding as to what is wrong.
Stay in touch, ok? And be sure to ask all the questions you might think of.
~Laura
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