Diagnosed Tuesday

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Nikki J

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I am sorry about the posting limit. It is somewhat new and apparently can’t be adjusted but it does pass

look here Resource - Second opinions and first clinic visits for some second opinion tips. The rest of that resource section take in little bites as it can get overwhelming.
what they will do for testing will depend on your presentation and on the doctor. My clinic ( Mass General) often want their own emgs but waive that sometimes in they know the original emg examiner. Whether there are other tests that need to be done for a full rule out of mimics of course we don’t know

ask about voice banking st clinic. MGH refers us to Children’s ( weird I know) where they have a program for all things ALS communication and help with direction and give or loan equipment. We have lots of threads on it if you search as well.

certainly some people have continued to work for a time. What, who and when to tell varies tremendously. Do consider the energy cost and the trade off of benefits from work with time with family. Once you stop if you have enough recent social security credit you will be eligible for ssdi and medicare. There used to be a 5 month wait but that was eliminated
 

Clearwater AL

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Kerivoo… I’m sure it has been frustrating for you. Few things have me wondering, one you wrote…

“The 1st EMG in (Jan-2021) showed positive muscle damage in my rt leg & arm (was only done on the right side of my body), the 2nd EMG (Aug-2021) came back as negative for muscle damage (was only done on left leg-calf, and left arm bicep), the 3rd EMG (Sept-2021) came back positive for extensive muscle damage in 'multiple' areas. Neuro doc said that the first 2 EMGs were not performed properly,”

Golly, three EMGs. But, being described as ‘muscle damage’ then muscle
damage in ‘multiple’ areas. I’ve been involved with this for a few years and
I’ve not heard it described that way being said from any Neurologists Then for
a third Neurologist to claim two previous EMGs were not done properly.
That was rather bold.

Then, “Current neurologist did set up the 2nd opinion appt,” That would say to
me he/she has confirmed the onset of ALS… but maybe with some possible
doubt to quickly call for a second opinion following. Following 3 previous
EMGs now possibly you having to do a fourth.

Finally… “Am I going to have to have all the dozens of tests repeated again? Is
the doc going to do one of those "well I think it could be this instead" and send me
through a rabbit hole just to end up back here with this diagnosis??”

I hate it for you but that just might happen… because your case is all over
the map (as they say). Fortunately you’re going to a certified ALS center.
If you don’t mind what center is it? I hope resolution comes to you soon.
 
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kerivoo

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Thank you Nikki. I didn't want to sound like I was complaining about the post limit, I just didn't want others to think I was ignoring their responses. I think I'm just going to wait until after I get through next Mon & Tues appts before I go trudging through mass info and fake being as normal as I can pass for- for just a bit longer. My husband says that's not a good way to deal with things.
 

Nikki J

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I didn’t think you were complaining. But I am sorry about it as when you are new you are likely to have questions ans issues

one step at a time is good but do invest time and energy into preparing for your appointments. Go with written lists and also think hard about what you want to ask if they confirm the diagnosis on the spot or if they order more tests. Appointments can be so overwhelming it is easy to forget something. I still make lists for my appointments
 

Jabba

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Hi Kerivoo, I'm reading your comments and it is bringing back memories. My first symptoms were 2 years ago and started with falling at the start of a half marathon. Since then I have had a multitude of Doctors, diagnoses, MRI's, bloodwork, CT scans, Biopsies, etc. Mine started in my left leg and although it has gotten worse, it has not moved elsewhere. I was told by my Neuro early on that I had ALS. That has been backtracked a little and my current diagnosis is Upper MND Can't rule out PLS/ALS. My latest EMG/NCS shows progression but, it is slow. Another member told me "the only consistent thing is the inconsistency", so true. I drove my wife and children crazy consulting with Dr. Google and was definitely unpleasant to be around. I rarely look at anything other than this forum now and that has helped the anxiety. I also failed to take into account what my family was going through and only thought of poor old me! That passed and I am more at peace with what happens. My focus has moved to the family and making sure they are good. This forum has been wonderful and a wealth of information. The people here genuinely care.
 

kerivoo

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@Clearwater AL : Every neurologist I have seen here in my area has referred to my EMG results that way. I did ask about that, and was told it is one way of 'interpreting' the results. For the 2nd opinion part. He's been a neurologist for almost 40 years and said that he always encourages a second opinion when he diagnoses a terminal illness. In all fairness he asked me if I wanted him to set it up for me and informed me that it would be with a certified ALS center (IU Neuroscience Center) and I told him ok. At the time of his suggestion, it had only been about 10-15 minutes after he told me I have ALS (wasn't thinking too clearly about anything really). Thinking back on that moment now, I'm glad I was able to at least say ok.
@Jabba : I'm glad you were finally able to find peace. I'm not doing any Dr. Google research at the moment. I've been plowing hardcore into finishing school. I was attending part-time and after being diagnosed, I talked with my academic advisor and she helped me find alternative options that helped shave 10 months off what I have left and get full-time classes going. Between my academic advisor and my chapter leader for one of the societies that I am a part of, they have been truly amazing in helping me get my academic goals achieved. On the family side of this, I'm an introvert through and through, and I keep 99% of myself to myself. It has to be something I can't handle and big before I say something to my husband or anyone else. I've always felt that since I can't read people's minds, I don't know what all is going on with them, and don't want to add any possible burdens on them and make their situation worse. So, I just keep quiet.
@Nikki J : I've been preparing, I have my family's and myself lists together for next week and I hope the 45 minutes allotted will be enough time to cover 2 pages worth of questions. The one question that is really burning through me now is, when do I tell my employer? We're like a close knit family and everyday I feel guilty not saying anything. But the flip side to that is HR. As well as my supervisor and I get along, I know there has to be a policy or something like that for all this, and she ultimately answers to it and her supervisors. Not sure the doc can answer that one for me or not.
For everything else; my husband keeps telling me that eventually I'm going to have to deal with the emotions of the diagnosis and stop stuffing it down and hiding it, before I crack. I know I've been detached from it emotionally, for me it's feeling like I hurry up and get through school and other training sessions for work (achieve my goals), set up wills etc, before paralysis sets in. The only thing that seems to draw emotions about this particular issue to the surface is the 'I'm so sorry' or 'you can fight this' responses my husband and I receive now, on a near constant basis from friends and family that we have told. I don't understand why they are apologizing, when they didn't do anything to feel the need to apologize for. And fight it how? It's not like having the flu or some other infection, that you'll eventually recover from. I don't know if it's lack of not knowing what to say, or just saying something to be polite, but those 2 statements just irk me. What's the proper response to that? or is there not one?
 

Nikki J

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Good luck Tuesday. Continue to refine your question list. Of course you have a lot but make sure your questions are as clear and organized as can be. There may end up being a few major questions with the others being related so grouping will help. The doctor also does this all the time so likely will address some of your issues unasked
 

lgelb

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Glad to hear you are going full tilt on your education. The best advice you'll get here is to live your life until you can't.

Our responses to "sorry" was a shrug, and no one around us was naïve enough to talk about fighting, since my husband dealt with a fatal genetic disorder for 60 years pre-ALS. If they had, I'd probably shrug at that, too.

The extent to which you crowdsource your personal health is an individual choice. Feel free to exercise yours.

Realistically, if you are in at-will employment, I would not discuss ALS unless you are at a point financially, logistically and professionally, where you are prepared to be terminated or a lame duck, not that either is a certainty.

As for policy, there can be no corporate imperative for disclosing an illness, so the timing is yours, presuming you are fit for work at this time. If you were operating heavy machinery and lives depended on your steady hands, of course, there would be a moral imperative for early disclosure, but it doesn't sound like that's your case. Read your disability insurance policy, etc. if/as applicable, and have your ducks in a row.
 
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kerivoo

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Good evening everyone. Well the appointment today left me very frustrated to say the least. The doctor I saw today wanted to repeat all the labs that I just had done (at their hospital to note) and wants to do another (#4) EMG because he wants to see the 'P' waves for himself, but wants to wait 2-3 months before doing it. And when my husband brought up beginning the treatment process as soon as possible, and not waiting 2-3 months for the 4th EMG, the doc's reply was "it only adds 2-3 months, it's not a big deal really".

I wouldn't have minded the lab part if it were for tests that hadn't been done yet, or if they were 6+ months old. But it was the same ones from less than 3 weeks ago. I gave my blood for it anyway, even though they're resulting the same as the previous ones.

And when doing a reflex test, is it normal to have your feet planted on the floor?? I've been in the medical field over 23 years and had never seen it done that way before. When I asked the doc why he was doing it that way, his reply was "because I am". He came across as being very arrogant and condescending.

He said he would say that he was 100% certain in his opinion that I do not have ALS because I didn't present like the other ALS patients in his clinic did. My husband said 'I read not everyone presents the same with ALS and that's why it's hard to diagnose", and the doc said "there's a checklist I use as criteria for ALS"

He also said that because he didn't see any twitching in my tongue, then it couldn't have happened, I offered to show him the video I took of the first time it happened (it freaked me out) and he said it didn't matter.

Needless to say, I have an appt with the neurologist that diagnosed me this Friday to discuss treatment options. Has any of you ever been treated that way? I just felt like I was an inconvenience to him and that he didn't want to believe anything that my husband and I had told him. Sorry for the rant.
 
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rmt

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Wow, that doctor sounds like an arrogant jerk! I would certainly try to find somebody else!

The first neuromuscular specialist we saw was awful. She was looking at a different patient's EMG and was really rude when we pointed out that it wasn't my husband's test results. Then she told us he would almost certainly be in a wheelchair by Christmas (this was in May 2019 and my husband is still very mobile to this day!). Needless to say, we didn't go back to that doctor again!

We saw one other ALS neuromuscular specialist (at a will renowned University ALS clinic) that I thought was rude and dismissive of our questions.

Thankfully, we have now found 2 ALS specialists that we like. I would definitely shop around to find somebody you feel comfortable with and listens to you.
 

lgelb

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I'm sorry, not understanding this sentence:
He said he would say that he was 100% certain in his opinion that I have ALS because I didn't present like the other ALS patients in his clinic did.
 

kerivoo

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Apologies, my brain was working faster than my hands. **He was 100% certain in his opinion that I DIDN'T have ALS***.
 

lgelb

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No worries, I edited it so everyone's clear.
Speaking of clear, as others have said, it's helpful when you mention the names of centers so others can gain/provide context if they have it.
What justification did he give for postponing the EMG (what will be more clear that is not ALS in 2-3 months) and if he thinks you don't have ALS, what does he think is still in the differential?
 

Nikki J

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I am sorry. I hope your meeting with the neurologist on Friday is helpful. I know you are tired of test and doctors and no wonder. And this last one does not sound like anyone I would want to see again. I don’t think you would trust his opinion if you went through with the emg with him, especially if he continues to say no ALS? I do think you need a real second opinion from an ALS specialist at a university level medical center even if your diagnosing doctor is one ( and you haven’t said he is). can you travel? does your insurance cover you out of state? There may be perfectly fine doctors near you that would be appropriate but it seems like maybe it is time to go one of the major centers. If someone here has personal experience of an in state center that would be great but being a Center of Excellence is more political than anything else
 

kerivoo

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@ lgelbe: Thank you for correcting it. The 1st place I went to was @ IU Health Neuroscience Center in Indianapolis, where I was being treated by a neurologist for migraines. The 2nd place was JWM Neurology in Fishers, IN, and the 3rd place was through Witham Health Services. The 2nd opinion neurologist works at the ALS clinic @ IU Health in Indianapolis. Update for the EMG; the als doc I saw yesterday (from IUH ALS clinic) wants to do a repeat EMG in 2-3 mo and every 2-3 mo thereafter to 'gauge the rate of degradation' (called this morning to tell me my other labs are normal (the same ones that were normal less than 3 weeks ago). I'm not a pin cushion and that seems a bit excessive to me. Is that normal for all ALS clinics???
@Nikki J :The IU Health places and JWM are all university level medical centers. The witham/diagnosing neurologist, practiced under the director of the IU Health ALS clinic, he has over 39yrs experience and has treated dozens of ALS patients. I have really excellent insurance through my employer and my husband got me an appt scheduled with the Mayo clinic ALS team for Dec. Sorry if it all seems confusing to you all as it is to me (too many docs to keep track of at this point). Has anyone been to the Mayo clinic place before?? I'm starting to get serious hesitations about seeing anymore neurologists and feel that my time would be better spent just starting treatments maybe?? I honestly have no clue where to go from here. I've pretty much handed the reins over to my husband because I'm just tired of doctors in general at this point, and he seems really eager to help tow the load. (is that bad of me to let him??)
 
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