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Lynk

Active member
Joined
May 20, 2015
Messages
31
Reason
PALS
Diagnosis
05/2015
Country
US
State
FL
City
Tallahassee
This is from the report by the neuromuscular doctor at Shands/Jacksonville Florida. I would appreciate your input and help with the questions I pose below.

"Needle EMG demonstrated active denervation, chronic reinnervation, and reduced voluntary motor unit recruitment in the right FDI, EDI, FCR, biceps and deltoid muscles. The right T6 and T8 para spinal muscles were normal. The right quadriceps, iliopsoas and tibial is anterior muscles were electromyographically normal."

"The presence of painless rt. arm weakness, without objective sensory loss and accompanying hyperreflexia is involved segments is concerning for ALS. The needle EMG demonstrated significant active denervation in affected muscles indicating that this is a lower motor neuron condition; the hyperreflexia indicates accompanying CNS dysfunction. At this time I do not find evidence of LMN dysfunction in other limb muscles and therefore a diagnosed of ALS cannot be made at this time. However, I think it unlikely that her condition is caused by structural root disease as this would have to involve the C5-C8 segments, be painless, purely motor, and have unexplained hyperreflexia. Likewise, brachial plexus dysfunction is unlikely. I think her hx of mild improvement in pinch strength is uncertain and needs to be followed. Clearly is she does show improvement then ALS is unlikely.

Given my suspicion for ALS and how safe rilutek is it might be worthwhile to utilize this drug in the early phase of her illness.

I would like to re-examine her clinically and electrophysiologically in 6 months if there is no deterioration or sooner if her condition changes."

After this appointment I came away with the clear feeling that he thought this was ALS, although he wasn't ready to call it. As I have pondered my options which include applying for SSDI I realized that they may deny me as long as he is not definitive. I called him and he said that I just don't reach his threshold for this diagnosis until it spreads to other limbs, but could not give me any other cause of the problem with my right arm and hand. Also, I told him that I have had some changes--that I have started to have spasms in my hand probably 10 times which started after I saw him. But It didn't seem that he took that as very significant. Just said I should talk to my local neuro and ask for klonapin.

So do I have to wait until November to see him, get a firm diagnosis and then apply for SSDI? My local neuro coded it ALS in the prescription for rilutek, but don't know if that is enough for SS. Will they want the second opinion to make the judgement? What if I apply and get denied and then reapply after a firm diagnosis. Does it work against you? Problem is that I want to retire in Sept. and travel and do things while I am still pretty functional. But unless I have SSDI in place I won't be eligible for Medicare and health insurance will cost a fortune.

Would some doctors call it with this set of symptoms and test results or do they all wait until it is in more than one limb?

I asked my local neuro about a consult at Mayo Jax which is a center for excellence. My current HMO insurance doesn't normally cover Mayo, but I could probably get a consult through and then I will be changin insurance at the next open enrollment so I can go there, but that won't take effect until Jan. 1 2016.

All this stuff to deal with is stressing me out and I so appreciate any words of wisdom any of you have. Thank you.
 
There is a certain group of criteria called El Escorial which says you must have symptoms that are progressive within a limb or another area becomes involved, an emg must show the correct pattern, and upper motor neuron symptoms must be present. Your report involves one limb, and only shows lmn at this time. That is why he is holding off. He wants to see the progression and umn signs.

I probably haven't explained this so well but I am sure someone else will.
 
Medicare is not going to start until after the 5 month waiting period. And that won't start diagnosis or not until after you stop working. Unless your monthly salary is extremely low ( a little over 1000). So you are going to have a coverage issue. Sorry. If that is in your medical records saying clearly a diagnosis of ALS can't be made I don't think you will get SSDI under the TERI provisions now anyway. But if you stopped working now and got diagnosed in 5 months you might get backdated to your quit date with the symptoms on record but as long as you work the clock won't start no matter what.

I am not an expert in SSDI but that work requirement seems pretty clear. Check with ssa. I thought you were going to?

Steph is right about El Escorial
 
Yes...I understand that the SSDI would not start until I stop work. But if I apply now and retire in September then I was hoping that the approval would go through and the 5 month lag would come through in November. The look back would be for September and that is when the benefits would start. But if I don't have a firm diagnosis until November, apply then, then the 5 months will extend to April 2016. That is a long time when you can be looking at 2-3 years as a possible time frame.
 
I don't think it works that way. Search the net for ssdi technical denial. That is what will happen if you apply while working. Ask your ssa office. I think you could quit in September apply in November if you get diagnosed then ( maybe you still won't meet criteria?) and given your history get backdated so the 5 month waiting will start from when you left work. But it is always going to be five months from the latter of stopping work and medically qualifying. Where it might be unpredictable is what if you quit and then at follow up aren't diagnosed. You might still get disability but if it is not under TERI ALS I think there is a long wait for medicare. Obviously you don't want to progress but on the other hand not knowing about benefits makes it hard. Find a good person to talk to at ssa and run all this by them. There is also something called intent to file that you could do but not sure it would matter now
 
Thanks. I did go to my local SSA office and they told me to file even though I haven't stopped working. I told him I intended to stop in September so still not sure how all that works. I didn't have the Jax neuro report at the time so it wasn't clear about the lack of diagnosis from there, although my local record does have it so current insurance will pay for the drug.

Of course I don't want this diagnosis and if I go on for a long time with just one weak arm/hand that would be great...but I think I have to live as if I do have it, so we are pretty sure that I will stop work in September and we will find the money to pay what we need to pay for health insurance. Navigating the SSDI system is just so confusing and I still don't know what to do..conflicting information. But time to smell the roses, as they say, so SSDI and Medicare or not that is what I'm going to do.
 
The best thing I did when my wife was about to be diagnosed was I maxed out her life insurance.
 
I think you are very wise Lynx. No one ALS or not should put off living the life you want as long as you do not end up starving and homeless
 
Update: I have now talked to 2 SS people on the phone and one in person at local SS office. Conflicting info on SSDI continues. The first phone SS guy was worthless, but the woman yesterday said that if I applied for SSDI before I stopped working it would be denied, which makes sense and is what Nikki said, but is not what the local SS guy said. She also said that the five month waiting period meant that the benefits would start at 5 months and would not be retroactive to when I stopped working. This is contrary to what I have read on this forum and I pressed her saying I had heard of people getting back benefits, but she was firm that this didn't happen. ? She did confirm that I would be eligible for Medicare at the 5 month point if I have the ALS disability. So I guess I understand that now is not the time to apply and I will hope to figure it out in the Fall.
 
I think what we said might happen and what happened to Notbrad is that if you applied at a time after you stopped working and after documented symptoms that it then might be backdated so the 5 month countdown begins at the latter of those 2 events. In Notbrad's case he had been symptomatic and stopped working sometime before his official diagnosis so once he applied they looked back to his stopping work and being symptomatically disabled and gave him benefits 5 months after those events There is a place in the ssdi application where you put the date you became unable to work. There is no way around the 5 month waiting period after stopping work I think there seems to be a little wiggle room on the medical disability date as it appears that people who were unable to work prior to official diagnosis if they had documentation in the medical record of symptoms that proved to be ALS were able to use a date prior to official diagnosis. It may depend on the person reviewing your application. But if you stop work in September there is no way you will get benefits earlier than 5 months later than that.
 
I'm no expert on SSDI either, but I agree with all Nikki said. I believe you need the Als diagnosis and to be earning less than about $1000/month for the 5 month ticker to start.
 
If it was Dr Pulley you saw he was great with me. He gave me my 1st diagnosis and was visibly unhappy to do so. He took the time to talk with me on the phone several times afterward and gave me a disability letter when I left his office at the time of diagnosis. I would trust his opinion. If hyou ask him straight up what he thinks I am confident he would tell you what he believes. But as others have said what he believes and what can actually be diagnosed according to medical practice standards can be two different things. I am sorry for your illness.
 
OK starting to get it :) it will all probably seem so obvious to me at some point. Thanks for your patience.

tripete. It was Dr. Berger I saw and I liked and trusted him. It is just so frustrating, as so many of you know, to know that he really thinks this is what I have based on 30 years of experience, but the data just doesn't cross the threshold....yet. And by the time it does I will have necessarily lost significant function. And there is nothing else that he left on the table as a probable cause of my weakness. It has just been a month since I saw him, and maybe the fog is lifting a little. What a challenge to live each day making plans as if I have it but trying not to get mired in too much despair. Some friends and my youngest daughter, in particular, want me to behave as if I don't have it until I know for absolute sure that I do. In my daughter's case I understand as she is 19 and wants to live her lovely life without having to think about this until there is no avoiding it. But that genie is out of the bottle for me.
 
Nikki is right. I stopped working when my symptoms began in June of 2014. It took 11 months of doctor visits before I got the final diagnosis. When I filed for disability online, I indicated that when my symptoms began and when I stopped working. They went out 5 months from June of 2014 and made my disability effective December of 2014. So I received backpay from December of 2014 to April of 2015. My Medicare Part A was effective in December of 2014 and as I am still covered on my wife's commercial plan, my Medicare Part B became effective in June of this year but Medicare is secondary to my wife's commercial plan.

Vince
 
While a lot of this thread has been down in the weeds of SSDI, SSA and insurance, etc., I'd like to backtrack for a moment.

ALS is a disease of widespread, acute and chronic denervation.

Your denervation is not widespread and is limited to one limb. That would generally mean our first suspicion should be something that affects one limb only (in this case an arm), such as a radiculopathy, brachial plexopathy or some other pinched nerve. The EMG summary dismisses a cervical radiculopathy and notes that a "brachial plexus dysfunction is unlikely" but why? When dealing with ALS (a diagnosis of exclusion) I think you want more certainty than "unlikely".

Also the fact that there was no denervation in your thoracic paraspinals puts ALS in question. Peripheral neuropathies look a lot like ALS unless (or until) denervation of the parapinals appears.

I guess what I am saying is I understand why Shands didn't give you a diagnosis of ALS at this point. My guess is you wouldn't get one at Mayo (Jax) at this point either.

“Would some doctors call it with this set of symptoms and test results or do they all wait until it is in more than one limb?” As we have discussed in the past, some neuros put ALS on the table as soon as they see a possibility. Others wait until you meet the El Escorial criteria before they mention it. As with so many things about ALS, it all depends…
 
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