Aa
Mixed Signals
OK, if anybody's interested, all my tests and stuff are in a journal entry. I'm Transverse Myelitis, but unknown if it is a first attack of MS or not at this point.
I got the strangest thing in the mail today--an invitation from my MS neuro's office to see if I qualify and want to participate in a drug trial for MS neuropathic pain. I've had a scheduler there say "since you have MS" when making an appointment, but I guessed it was just because I was making the appointment with the MS nurse practitioner specialist. I was pretty much thinking they were convinced it was TM forever until my last appointment, when the NP said to make sure I'm seen quickly if something changes, since I'm possible MS.
In looking at my records I requested, the notes from my last visit lists 1) MS, along with 2) unspecified causes of encephalitis, myelitis and encephalomyelitis (with date of onset a year after actual), 3) visual field defect, and 4) obstructive sleep apnea in the "Problems" category, with "Chief Complaint" being followup of the latter three. My last two appointments have been since they adopted an automated records system, utilizing notebook computers during office visits.
Under the Past Medical History part of the record, is a list of conditions that have "yes" answers. Most are what I remember checking off on their intake form, except for the one labeled Dementia or Alzheimer's. (Unless I checked it, and I don't remember because of my dementia.) Seriously, I may have said something about being a little more forgetful, but it wasn't important enough to make it into the notes they made at my first visit before switching to this system. They also seem to have removed or replaced a few of my organs in the surgical history.
At my first visit, they looked hard at my 3T MRI films from April 08, but didn't inquire about the lesser January ones I had on CDs with me. Yet, in the notes there is mention of my previous neuro saying "there is faint enhancement as before" with regard to the April MRI, but no mention of any prior enhancement in the January ones on the radiologist's report. This discrepancy bothers them, just like it bothered me. However, I don't think my new doctor knew I had the prior ones with me at that visit. Would there be any point in asking them to take a look at them now? They do have the radiologist reports. On my newest ones taken in October, the neuroradiologist who works for that practice doesn't mention one of my two spinal lesions, but the neurologist or the NP wrote that it's still there on the October films. Kinda makes ya wonder why they need the radiologist.
I did write to the Opthalmalogist I saw ten years ago when the eye trouble started, but haven't heard anything back yet.
My PCP has me on Miralax, and it seems to be actually working. She's sending me to a physical therapist for a urinary urge incontinence evaluation and program, so we'll see how that goes. (Get it, goes?)
How much of this should I get them to fix? I'm thinking about marking a copy of the last visit notes and highlighting what I question, or what obviously needs to be changed, like the surgeries and the wrong date of the onset of my neurological symptoms. I definitely need to get that Alzheimer's thing out of there. It's obviously wrong, or the NP wouldn't have pooh-pooh'd the suggestion by the neuropsychologist that I get more thorough baseline testing than the MSFCs he's been giving me.
So..wait for my July appointment, or mail them the highlighted/corrected copy and take the coward's way out? (One my favorites, since I am, indeed, a coward.)
While I'm at it, mail the CDs of my other MRIs so they can answer the enhancement question for themselves?
Wait until I hear from the long-ago eye doctor and incorporate whatever info I get from him?
Meanwhile, my non-painful paresthesias are back after a two month absence, I have a constant but very slight cramp in one leg, and the potty problems. So minor as to make me feel guilty for even bringing up the old stuff, since it doesn't affect the present diagnosis, anyway.
OK, done whining and rambling for the day.
I got the strangest thing in the mail today--an invitation from my MS neuro's office to see if I qualify and want to participate in a drug trial for MS neuropathic pain. I've had a scheduler there say "since you have MS" when making an appointment, but I guessed it was just because I was making the appointment with the MS nurse practitioner specialist. I was pretty much thinking they were convinced it was TM forever until my last appointment, when the NP said to make sure I'm seen quickly if something changes, since I'm possible MS.
In looking at my records I requested, the notes from my last visit lists 1) MS, along with 2) unspecified causes of encephalitis, myelitis and encephalomyelitis (with date of onset a year after actual), 3) visual field defect, and 4) obstructive sleep apnea in the "Problems" category, with "Chief Complaint" being followup of the latter three. My last two appointments have been since they adopted an automated records system, utilizing notebook computers during office visits.
Under the Past Medical History part of the record, is a list of conditions that have "yes" answers. Most are what I remember checking off on their intake form, except for the one labeled Dementia or Alzheimer's. (Unless I checked it, and I don't remember because of my dementia.) Seriously, I may have said something about being a little more forgetful, but it wasn't important enough to make it into the notes they made at my first visit before switching to this system. They also seem to have removed or replaced a few of my organs in the surgical history.
At my first visit, they looked hard at my 3T MRI films from April 08, but didn't inquire about the lesser January ones I had on CDs with me. Yet, in the notes there is mention of my previous neuro saying "there is faint enhancement as before" with regard to the April MRI, but no mention of any prior enhancement in the January ones on the radiologist's report. This discrepancy bothers them, just like it bothered me. However, I don't think my new doctor knew I had the prior ones with me at that visit. Would there be any point in asking them to take a look at them now? They do have the radiologist reports. On my newest ones taken in October, the neuroradiologist who works for that practice doesn't mention one of my two spinal lesions, but the neurologist or the NP wrote that it's still there on the October films. Kinda makes ya wonder why they need the radiologist.
I did write to the Opthalmalogist I saw ten years ago when the eye trouble started, but haven't heard anything back yet.
My PCP has me on Miralax, and it seems to be actually working. She's sending me to a physical therapist for a urinary urge incontinence evaluation and program, so we'll see how that goes. (Get it, goes?)
How much of this should I get them to fix? I'm thinking about marking a copy of the last visit notes and highlighting what I question, or what obviously needs to be changed, like the surgeries and the wrong date of the onset of my neurological symptoms. I definitely need to get that Alzheimer's thing out of there. It's obviously wrong, or the NP wouldn't have pooh-pooh'd the suggestion by the neuropsychologist that I get more thorough baseline testing than the MSFCs he's been giving me.
So..wait for my July appointment, or mail them the highlighted/corrected copy and take the coward's way out? (One my favorites, since I am, indeed, a coward.)
While I'm at it, mail the CDs of my other MRIs so they can answer the enhancement question for themselves?
Wait until I hear from the long-ago eye doctor and incorporate whatever info I get from him?
Meanwhile, my non-painful paresthesias are back after a two month absence, I have a constant but very slight cramp in one leg, and the potty problems. So minor as to make me feel guilty for even bringing up the old stuff, since it doesn't affect the present diagnosis, anyway.
OK, done whining and rambling for the day.
I sent the link to the study to those who requested it, and I put it in my diagnostic journey journal entry.
I don't know why you have to have MS to get in that trial for neuropathic pain. Neuropathic pain is neuropathic pain no matter that incited it, at least that is my opinion. And, people with TM can have documented neuropathic pai, I certainly have it. I would also be interested in seeing the study/protocol information. Can you please forward it my way as well, HB?
Julie
Julie
Thanks for the PEG tip. Now that I know it works, I'll ask the doctor to prescribe it.
As for the study, I personally am not eligible, because I'm not even dx MS, and I don't have any neuropathic pain except for the occasional foot stab. The brochure does mention placebos are involved. I told Shel I'd message her with the study's site if she's interested.
As for the study, I personally am not eligible, because I'm not even dx MS, and I don't have any neuropathic pain except for the occasional foot stab. The brochure does mention placebos are involved. I told Shel I'd message her with the study's site if she's interested.
$$$$ saving tip - the generic form of Miralax is available by prescription and is called Polyethylene Glycol. It is IDENTICAL to Miralax and dirt cheap compared to the name brand stuff. Ask you doctor for the prescription form - several people here on the forum have switched and are amazed at the cost savings. It will fall under your very cheap drug formulary - Miralax costs so much because you are paying for the advertising and pretty packaging.
You definitely need to correct your records - funny how they can remove vital organs without you even knowing. I once had a hysterectomy that was a surprise to me - of course I had those records corrected too. The alzheimers/dementia tick really has to go, its bad enough to have TM and possible MS on your permanent record if you need to get insurance without a third neurological disease.
The only thing I would want to know about for the drug trial is what is the protocol is and is there a group being given the placebo? I'm not real keen on those stage 1 and stage II investigations that leave some patients hanging out there without the chance for real treatment. Of course you always have the option of dropping out.
my best,
Lulu
You definitely need to correct your records - funny how they can remove vital organs without you even knowing. I once had a hysterectomy that was a surprise to me - of course I had those records corrected too. The alzheimers/dementia tick really has to go, its bad enough to have TM and possible MS on your permanent record if you need to get insurance without a third neurological disease.
The only thing I would want to know about for the drug trial is what is the protocol is and is there a group being given the placebo? I'm not real keen on those stage 1 and stage II investigations that leave some patients hanging out there without the chance for real treatment. Of course you always have the option of dropping out.
my best,
Lulu
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