Regarding if you should try to connect symptoms to meds--not when you're guessing.

Let's say you start taking Rx A. You notice it's making you drowsy and discuss it with your doc. He agrees the med is causing it, but the benefits outweigh the side effects. Fine--mention the drowsiness and explain it's caused by the Rx.

When were you diagnosed with PN?


So, in order to qualify with a Listed Impairment for PN,

11.14 Peripheral neuropathies. With disorganization of motor function as described in 11.04B, in spite of prescribed treatment.

"B. Significant and persistent disorganization of motor function in two extremities, resulting in sustained disturbance of gross and dexterous movements, or gait and station (see 11.00C)."

"C. Persistent disorganization of motor function in the form of paresis or paralysis, tremor or other involuntary movements, ataxia and sensory disturbances (any or all of which may be due to cerebral, cerebellar, brain stem, spinal cord, or peripheral nerve dysfunction) which occur singly or in various combinations, frequently provides the sole or partial basis for decision in cases of neurological impairment. The assessment of impairment depends on the degree of interference with locomotion and/or interference with the use of fingers, hands and arms."

[QUOTE=LIT LOVE;1153276]Regarding if you should try to connect symptoms to meds--not when you're guessing.

Let's say you start taking Rx A. You notice it's making you drowsy and discuss it with your doc. He agrees the med is causing it, but the benefits outweigh the side effects. Fine--mention the drowsiness and explain it's caused by the Rx.

When were you diagnosed with PN?

***** At least 2 years ago. Recently, like a month ago - it was proven via a skin biospy. So, we now have solid numbers/data to prove it (rather than just clinical impressions).

Small Fiber PN. Three test spots were taken. In two out of the three spots, I was outside the bounds of the normal range. Therefore, the KU doc concluded her DX of small fiber PN. Small fiber PN CANNOT be detected via NCT/EMG. And, its most prevalent symptom is PAIN.

Finally, a general neurologist often misses PN. They are usually looking for 'big stuff'. MS, ALS etc.

To get my DX requires a subspecialty of neurology known as skeletal/muscular. KU is one of EIGHT accredited PN centers in the country. I was told my the President (Gene Richardson) of one of the large, national PN organizations that I 'must get to KU to even have a shot of them DX'ing my condition correctly."

Until I went to KU, over the last two years it was the usual case for a PN patient . . . bounced from Dr to Dr as they throw up their hands in bewilderment. At least 3-4 docs DX'd as PN - but did not know how to treat it. Some of the treatments made it worse . . . they would 'surge their shoulders . . . and say 'I'm sorry. There is nothing else I can do for you."

My brother has been a DR for 30 years. He is a good one. He had no idea of the distinction between SMALL fiber PN and LARGE fiber PN. Neither did any of the other docs I was seeing until I got to KU.

Thank you.

Hi D,

Not sure when you will see this post since you said you were heading out on a trip.

When it comes to SSDI advice, Lit Love is the one that KNOWS. I only guess and voice a view from MY perspective. Lit Love knows the SSDI perspective. Always take Lit Love's advice. You won't go wrong. If her views differ from mine on any point, PLEASE ignore mine and follow Lit Love. I only guess and may be very incorrect.

As to being told by your reps not to gather too many opinions, that may be true to some extent because you may be getting information from sources like me, that are only guessing. Knowledge is power and the more you know, the better off you will be in your claim for benefits. There are many TRUSTED sources of which Lit Love is one. (Not me.)

Lit Love will never steer you wrong and has provided reference sources to aid you. Be sure you avail yourself of them. They can be vital to your claim.

There are some other people here that can also provide good information but be careful of "advice" by some that can only guess like me.

The best "advice" that I can give you is to paint the picture accurately of your situation. You are trying to SHOW SSDI (people that do not know you) your limitations using paper.

Keep in mind that your pain is invisible to others. Even people that know you may not even realize how you are impacted. You are attempting to convey why you are unable to work at any job.

One last thought. Since you were a teaching, I am assuming you have a college degree. The more education you have, the more difficult the process, as you have qualifications to perform many other occupations even with limitations than someone of a low level education. A factor in your favor is your age. For young people, the process is more difficult.

The BEST advice I can offer is take everything Lit Love posts to heart. It will serve you well.

Thank you Hopeless, I do make mistakes though. There are others that post on the forum that I trust to catch any errors I might make.

Regarding age, the part about it getting easier to be approved as you get older, that I have found to be not entirely accurate. It is absolutely true within the context of the Grid Rules, but otherwise, the rules themselves do not allow for age to be factored. Of course, some adjudicators and ALJs may be more lenient in their assessment of older applicants, so...

Grid rules
 

Hi Lit Love,

Thanks. That is exactly why I warned D of the sources of information he might gather. I guess I was thinking only of the grid rules.

Thanks for explaining where my thinking goes a bit off kilter, especially, for the sake of the person that began the thread, and me, too. (And all others that might read the posts.)

I would feel really bad about disseminating erroneous information.

As I mentioned in my first post in the thread, I was hoping someone like you would fix my info.

Thanks.

It's really, really common to explain it that way. I used to explain it that way myself.

Lit and Hopeless - thank you very much. More when i get home Friday.


:grouphug:

Hi Can i find a good dr,

OK, this is a first for me, attempting to put a link in a post.

http://www.disabilitysecrets.com/rfc...statement.html

Not sure if it will work or not or if permitted but this link talks about getting your physician to complete a form regarding your abilities.

This form is usually submitted with an appeal but I think it may help if submitted with your initial application. Better let Lit Love comment on this. I am guessing (as usual) but I think most initial applicants do not submit this because the applicant is unaware of it until they are denied upon initial application. I do not know if you are even allowed to submit this at the initial application level.

All that being said, it might be worthwhile at least looking at the form so you can see what information will be needed down the road if not approved at stage 1 of the process. It might help you with completing the form you are currently working on for submission.

The more information you have about the process and what needs to be provided, the better off you will be in your quest for benefits.

Hi can I find a good dr

Here is another link you may find interesting. Since PN causes pain, you might find this helpful.

http://www.disabilitysecrets.com/soc...onic-pain.html

Please be sure to scroll down and read the entire article. It talks about credibility and is directly on point for some of the items mentioned by you and by me.

Hope this helps some.

If you find more names and aren't able to edit, please report the post and let us know.
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