What vital Question to ask Neuro on Friday??

[Dagmar]

Lisa, it’s only natural to feel anxious about an upcoming medical appointment – – we all have inner fears and worries, BUT:

– Don’t let doctors intimidate you. Don’t worry about being an anxious patient… you are one. And rightly so, because you are there on serious business.

– Get a notepad and write down everything you want to ask. Bring it with you and check off items as they are discussed. Don’t let the doctor cut the visit short if you haven’t covered everything. Remember, you are paying for the visit. The doctor works for you.

– Ask for a full exam if you want one. Talk openly.

– If a student comes in, don’t let them dominate your time or intimidate you. I usually say, “I’d rather wait for the doctor to discuss/do this…” There will be time in later visits to chit-chat with the student.

Bottom line: go in prepared, calm, smile, and be assertive. Wishing you good luck – – let us know how it went.

[Richard Maloon]

https://www.youtube.com/watch?v=84EuT7ymigU&t=4s&ab_channel=KevinO%27Donnell

 

I have found this youtube video to be one of the best about ALS based on this person’s personal experience. It is 20 minutes long and even though it was uploaded maybe 10 years ago, I can attest that almost all of the tests he endured, and maybe I had a few more painless MRI tests are accurate. I also recommend you watch this video ONLY and do not see his future ones until later. I have not been clinically diagnosed with ALS but you don’t have to be a weatherman to know which way the wind is blowing. Based on my symptoms I think I am one year since the disease started. I have an appointment here in the Boston area on Feb. 12 with the Lahey clinic ALS center.
Yes, insist on tests.
If the link does not work Search youtube ALS Kevin Donnell.. Maybe sad…

[Lisa Ryan]

Hi Dagmar, it is only a telephone appointment this time.  I do have a list ready but he is very coy about answering things which makes me have to ask for clarification all of the time and then I feel like I am just badgering him with clarifications.  I was very upset about the student doctor again, this has happened twice and to me it just derails me right of the bat.  It changes the dynamic to more of a less serious natured appointment and there is joking around going on.  I will try to be as assertive as I can I am just not confident that I will get the answers I need because if he doesn’t want to give specifics then how do I force him?  He has ruled almost everything out and when I try to get him to give me something he always says, a slow progressive muscle disorder……..That means nothing to me so I ask like what and he just says there are lots of rare genetic muscle conditions.  Again, that means nothing to me.  When I flat out asked about ALS he just said that if it were that, he would expect to see A lot more denervation.  Again what does that mean?  It’s like playing a game that I am always the loser of.  Then I wait until the next appointment wondering and waiting, then it happens again and again.  He obviously does not know what is wrong I guess 🙁

[Nancy Gilkeson]

Lisa, I feel much like what you are expressing re: office visit & what I imagine the expectations & responses will be by Dr & have a timidity about asking for what I need or want.  Dagmar’s response is what we need to do, but we lack the confidence of how to do it successfully.  We both probably are anxious from past experience (I am) so maybe could make a plan for succeeding this next time.

I have my “2nd opinion” appt scheduled next month and your question here reveals to me that I need to plan if I am to succeed in coming home from that trip with a sense of being heard, understood, supported and that I will have received forthright information of my personal disease process.

Now, how do we do that?  I wonder if we can practice in front of a mirror our interview of questions, practice our “presentation” of need for answers…with a confidence that we dont presently feel???  (Adage: “practice makes perfect”.)

I never thot of this till “reading myself” in your question.  I”m already cheering for you, “go Lisa”!  Thank you!

Nancy

[Deleted User]

I know this feeling. These professionals are supposed to have the answers for us, but with ALS, it does not work as such. Two Neuromuscular specialists, and now a third in the works, cannot tell me everything I want to know. I think I want to hear that its isn’t ALS, but they have not said it. And I think I want to hear that it is, so I am done with this not knowing what is happening to my body. They have not said that either, (have they?) and I just hold out hope. I push for a proper diagnosis and they cannot rule out ALS. Do I trust them? I know they have a lot of experience, but I am not illiterate either. I have spend a good part of these months and years researching, studying, and learning about ALS. I started and finished a BA in Psychology, but mostly studied all I could into the many nights about ALS diagnosis and all the research I could find.

Is it a blessing or a curse for me to fill my head with this, I don’t know? But I know that those doctors are trying, and sometimes just being patient with them is the hardest part.

[Kathy stitz]

Hi Lisa,

How many different doctors have you gone to?  Maybe you could go to a different neurologist.   It seems like you have had a lot of testing done.  It often takes a lot of testing and several months for a diagnosis of ALS.  It must be very frustrating to not have your questions answered about what is wrong with you and I hope you are able to get answers from someone.  Also I don’t think the student doctor should be coming in by themselves without the doctor being there.  I agree with Dagmar and Nancy about being assertive and practicing what you want to say.  It’s really difficult to diagnose ALS since there isn’t one definitive test for it and they have to rule out other conditions that have similar symptoms.   When you asked about ALS, his answer seems to suggest he thinks you don’t have ALS.  I’m hoping for you that this is the case because ALS is such a horrible condition to have.  Best wishes and let us know how you are doing.

[Lisa Ryan]

OOPS, I think i entered my answer when it wasn’t complete.  Kathy I have seen 3 neurologists but one didn’t examine me, the other one was an ALS specialist.  He examined me once in 2017 and gave me a diagnosis of cramp fasciculation syndrome.  I went back to see him a 2nd time but his fellow (dr. learning the specialty of ALS) did the entire examination.  The specialist came in for a few minutes at the very end to just confirm that the other doctor saw only minor things.  In between I was referred to a neuro-muscular specialist who i still see.  He is taking his time, we have ruled out everything that I know of.  Sometimes he is hinting that als is still on the table he just isn’t seeing it right now he said but that’s why he is monitoring me.  That’s all I know he doesn’t say much.  I cannot see another specialist because I am still seeing him.  Our medical system does not really allow more than 2 referrals so I am not able to see anyone else.  I wish I could go to the united states to a Mayo Clinic and get some fresh eyes on me.   I agree about doctors learning should not be doing this alone.  My second appointment to the ALS clinic was botched because the new doctor was alone.  He did not see large MUAPS or a chronic change in my Tibialis muscle that was found 6 months earlier by the neuro-muscular specialist.  I also had a couple of very brisk reflexes which he said were all normal in his report.  So frustrating.  Same thing happened this past September, the doctor who was supposed to be examining me and was learning did not do any clinical testing but put in the report that he tested reflexes, gait, occular something, babinski.  HE DID NOT!  I don’t know how they can get away with this.

[Lisa Ryan]

Hi Nancy, thank you for your response, it makes me feel less alone in this!  It helps because I am very hard on myself and always feel the reason I leave feeling angry that I didn’t get what I needed is because I am too shy to question a doctor.  I do feel intimidated and I worry by asking too many questions that they will write a lot of my symptoms off to having anxiety.  I am going to try not to rush my questions and let him say everything he needs to.  I think it might be easier on the phone than in person because I am only speaking to the Doctor, not him plus another person.  My main worry is that I still won’t get any answers and I will go on having these issues and still have to wait to get worse.

You said you are getting a second opinion…where are you on your Journey to diagnosis of your health problems if you don’t mind me asking?

 

[Nina]

Lisa, I agree with Kathy’s comment. I think you should see another doctor ASAP and ask for an EMG. They can diagnose you with “probable ALS,” which I had for almost a year. I even had a specialist at Emory tell me I didn’t have ALS. And it was about a year and a half in that I was finally diagnosed with ALS. Not that I really wanted to hear that but it helped to have som definition of what was going on.

[Nancy Gilkeson]

Hi Lisa.  It took me from March 2020 til Sept. 2020 to get to an appointment with a neuro-muscular specialist who did EMG & NCS, ordered Cervical & spinal MRIs & 13 vials of blood work in October.  She teleconferenced me (from another city) as a followup late Nov. 2020.   She also was hesitant to state possible dx but when I asked her  about ALS (due to profound atrophy in rt hand and lesser amt in rt hand + worsening abilities) she stated she did not see bulbar signs “yet” but it could be an LMN variant of that.  In December, after more blood work was essentially negative, she stated she’d like to send me for an “academic” 2nd opinion.  All I know is that I have “pronounced, chronic, neurogenic changes in C7/8 bilateral distribution & Left, L5 distribution ” and definitely a “Lower Motor Neuron Disease.”   I am scheduled to see an OHSU Neurologist .   I believe my forearm atrophy is worsened and dexterity as well.   It is hard not to have answers.  But I am trying to learn patience,,,with myself & with medical practice which seems so slow.    Hope this answers your question Lisa.

[Bill]

You are getting good advice on listing your questions and insisting on answers. Doesn’t matter if phone or in person. I went over a year with “it is likely not ALS but we don’t know so let’s just keep coming back”. I insisted on a referral to a university  mnd specialist with an AlS clinic. That  appt ended up being a 10 month wait. They will do little without expert nerve testing.
Really sorry you are going through this and hope you do not have  ALS or one of the mnd variants.

[Veronika Wuyts]

I can relate very much to what you feel.

– we always go with two to the apiontment, my husband, the patient, and me, his wife caretaker.

– I note down most of what is said

– we prepare our questions in advance

we are also changing neurologists now because there is no match between the doctor and us. every visit is a source of stress and fear for her reactions. she is very rational, gives little information if we don’t ask for, and if we ask for she will never take riscs or try something she is not 100% sure of. as if we have much to loose…. she doesn’t use the ALS FRS tool, pretended there is no tool to use,  when I know it is used, so I fill it in myself from what I found on the internet.

but the most oimportant thing: she has little to no empathy and is not motivating us. it is only doom and gloom, as if we don’t have enough of that. So on our part it is not so much the medical side that is missing, we have EMG twice a year, clinical tests every NMRC meeting (about every 3-4 months). but as a human being we are totally left in the cold. and that takes a huge and unnecessary toll on our already limited reserves….

I wish you a all the best!

[David Crellin]

Hi Lisa, you have a right (well, in the UK we have) to record the meeting. I suggested to my consultant that this should be offered to all patients/carers. I know that most people hear a diagnosis and then shock stops them hearing much more. However, it might help.

I too took 12 months until I received a confirmed diagnosis – average for ALS.

[Lisa Ryan]

Hi David, I plan on recording it because I simply cannot absorb what he says when my mind is running 100 miles an hour trying to get answers and explain the symptoms I have.  I wish there was some kind of an advocate group for those who seem lost in the system.  I do realize it does take time and I would be perfectly ok with that if I felt that I was getting a thorough clinical exam and a non rushed EMG each time.  I’m so sorry you have this horrible disease.  take care…

[Lisa Ryan]

Thanks so much everyone from the bottom of my heart for your help.  I can’t tell you how grateful I am that I found this site and that so many people want to help others, such good people! 🙂

Richard, I have seen that video years ago, it is very good, actually once I watched it, that is when I had a gut feeling that I had the same thing going on.  Thanks for your reply. It is very sad.  I saw a message from his daughter that said he had passed away 🙁

Nina, I’m really sorry to hear about your diagnosis and what you went through.  I wish it was as simple as just asking for another emg with another doctor.  I am not able to do that but I can ask my current doctor to do another emg asap.  Thank you

Hi Bill, well I have the same scenario as you…he says he doesn’t “Think” its ALS but that doesn’t sound very definitive does it so hes watching for progress.  This is very hard to deal with to always go away with nothing.

Thank you Veronika.  My doctor is overly tight lipped, he speaks very slow and I can tell very clearly that he is really not being upfront, for whatever reason he is using.  It’s glaringly obvious that he is putting most of the weight on the EMG or he would have tested my reflexes or Babinski sign or a lot of other things he could use but he just continues to say there is not “enough” on the EMG to satisfy him which is unbelievably stressful to me.  It’s like all I am is a set of limbs to be tested for EMG, he is not interested in the quality of my life either, same as your doctor.  Sorry you are going through this as well.  The best to you and your hubby.

 

[Kathy stitz]

Lisa,

Thank you for your kind words to the forum members.   We all just want to try to be supportive and help if possible.  It must be very frustrating for you and I’m so sorry you are going through this.  I hope you are able to find answers for your symptoms and you can get treatment so you can feel better as soon as possible.   Let us know how your appointment on Friday goes if you feel comfortable doing so.

[Lisa Ryan]

Just an update from call.  I am deflated and frustrated and angry that I never get any answers.  He saw my videos of my intense fasciculations and seemed to throw out the Cramp Fasciculation Syndrome right away that I was diagnosed with. Same old thing, cant stop it, I have it worse than other people because of the Syndrome blah blah blah.   All discounted even though they have spread to my upper body and I mentioned my increasing atrophy.  He said that you can have muscle loss from aging and not using your muscles and 30% loss from the CFS.  Hmmm well case closed then right….

He said my nerve blood panel was negative.

The blood panel showed an abnormal gene ANO5 but that it needs to be combined with another gene for it to be diagnosed as a muscle disease of some type.  He just said that maybe he would ask for genetic testing and counseling at this point.

I had my list ready and went through my atrophy and weakness, almost collapsing on the stairs due to hip and knee weakness, massage therapist can see progressing atrophy.  told him about having shortness of breath and that its being looked into but nothing found so far.  Told him about tripping when going up stairs or curbs, seems like I can’t or I don’t lift my right foot up high enough to clear it.  Told him my balance is still not good and I stumble and side step each day.  No response to this.  I told him that his fellow didn’t do a clinical exam when I saw him in September.  He just said well we will do one in September.

So after all my worry and researching of my symptoms and talking to others with the exact same symptoms he said he thinks it is “unlikely” that it is ALS because he did not find active denervation on EMG.  Period end of story, he will not entertain clinical symptoms at all it seems.  If he did he would have checked reflexes and other things correct?   He keeps referring back to 2019 when the ALS’S fellow did my clinical exam and EMG by himself and said no ALS.

No idea where this leaves me.  Perhaps I am a Psycho Hypochondriac and I am making all of this up.  I believe i am not being taken seriously.

I didn’t know that apparently all you need to be considered for MND is Active denervation and he did not see that so I guess I am perfectly fine.  Nothing to complain or worry or think about.

Sorry for ranting.

[Nancy Gilkeson]

When I felt similar to this frustration Lisa, after a new PCP  a year ago, was dismissive with my complaints & seemed uninformed about my sx, or even who to send me to, defeat was all I saw.  It took 6 months to get to be seen by a neurologist and now 5 months later I have an appt for a 2nd opinion (on Mar 31) & maybe more testing & conferencing,  at the University level.   I have, meanwhile,  combed thru  you tube videos of people with ALS, cried alot, withdrew from others, thot thru some ramifications how to deal with such a horrid diagnosis.  I eventially saw several wonderful videos that gave a sense 0f  strength & hope about “not dying with als, but living with als.  Death is where we all are headed, no matter what the cause, but life is where we are right now!    I found this ALS News Today & am learning how it works & to participate a bit.  I CAN stretch & exercise (Thank you, DAGMAR)  I CAN do what I can do and am deciding to accept , give leniency to, what I truly cannot do.  I even asked a nephew to cut my steak into pieces!!    I am working on the heavy possibility of “what if it is ALS” and  am searching with a much clearer mind now, for information about other possibilities.

I am now writing down my factual findings that may be helpful, for when I do have my 2nd opinion.  (I signed up for membership onto Medscape website which has medically based information, medical articles etc, that I can search thru. You dont have to be a medical professional…scroll down until you find options that fit as non-professional and media.)   I am gathering my facts from my previous medical history in past 5 years which could possibly be related.  (Even that I had Polio when I was 6 yrs old…now 75;  I had an episode of very low sodium which was corrected in an ER with IVs over 3 1/2 hrs 3 years ago which could be significant;  etc)   Some of these “non-related” issues could be a culprit that no one can pull together if they dont know.

In other words I need to be my very best advocate to get the answer and meanwhile praying for a compassionate, knowledgeable professional to help me get to the right answer, and hopefully right treatment if there is one.  I will include you in my prayers as I ask for that help.     Yes,  seek how you can be seen by someone with fresh new eyes and heart.    I am so thankful for this website/these people and all they are doing and you surely are as well.

Nancy

 

[Kathy stitz]

Sorry about that Lisa.  I was really hoping things would go better for you this time.   At least they think you don’t have ALS.  That’s a positive takeaway.

[Lisa Ryan]

Kathy, I don’t know what to think, I want to be positive about it but there are things he cant explain away.  He is being sneaky and leaving what he wants out of his reports, didn’t mention my abnormal FDI which had abnormalities along with wasting and clinical weakness.  I’ve lost trust and faith in him and I feel he should be able to give some kind of diagnosis but he is always non-committal about everything and at this point I feel he will never go against the opinion of the Als doctor that said no evidence of it 1.5 years ago, and even in that appointment I was only examined by his assisting doctor.  I really don’t know what I am to believe anymore so I don’t really feel good about anything, I am still frustrated and no further ahead.  He wasn’t even professional enough to tell me that the gene is for limb girdle muscular dystrophy.  I am sure that he did not want more questions from me if he was to mention it.  He was trying to get off of the phone before I had even asked him my questions.  I find that it was wrong not to be upfront about what the gene was related to.  I didn’t know to ask, I thought it was some nothing gene.  Anyways, I am not feeling re assured after today.  I am trying to figure out how I can see a doctor that hasn’t seen me before so I can have a thorough assessment.

[Kathy stitz]

Hi Lisa,

I understand and it must be very frustrating for you.  A lot of doctors are like that where they don’t show empathy, are not straightforward, and just want to rush and not answer your questions.   I have experienced this myself with doctors and sometimes it makes me not even want to go to the appointments.   I agree with you about trying to go to a doctor that hasn’t seen you before.

[Lisa Ryan]

Well, after listening to the recording from our phone conversation I realized That I misunderstood what he was saying to me initially about not having his muscular dystrophy I found out through listening to the recording that he’s doing the genetic testing to see if there may be some other Jean related to the Gene that showed up that might explain my symptoms.  I literally gave myself hope that was not there for one day. I am glad that I didn’t make a deep dive into muscular dystrophy stuff because someone explained it to me that I am only a carrier I cannot have it without two genes showing up,. Well I’m back where I started from which is not a great place to be in. During the phone appointment he mentioned ALS saying it was very unlikely that that’s what I have and then he mentioned it again saying that I was tested for Lou Gehrig’s before and I just found it odd that he keeps mentioning it to try to negate any idea that it may be that. So I don’t know where to go from here and literally lost. I’m not able to somehow just live without knowing what’s wrong and go for the week so I can see my wrists forearms and right thigh and ankle are still becoming smaller.

I truly do not understand at this point with all the testing that I have done and all of the illumination of everything I can think of how it is that I could be experiencing what I am and not have a diagnosis I don’t understand this I just can’t believe that I’m sitting here with nothing, no further ahead than a year ago.  I am very upset and I’m mad and sad frustrated angry all of the above to do anymore I feel helpless

[Deleted User]

ALS diagnosis is a process of ruling out everything else, and the only thing left is ALS. So it is a process of elimination. Its so difficult sometimes because ALS can affect us all differently. Some of us get symptoms symmetric, others asymmetric, and still others get symptom progression so slow that 40% of us get misdiagnosed before we get a proper diagnosis.

The devil is in the frustration. Even with the possibility that we have ALS, a grief process seems to happen, which starts with denial, anger and bargaining, leading to  depression and finally acceptance.  Its natural too, so if you are mad, or feel like you need to negotiate the issue with your provider, realize what you are going through. Hope will forever be the mantra though, because that was preloaded into our DNA by God.

It is so difficult waiting. I have been stuck on a yes/no cycle since 2017, the most recent exam was a brain MRI that showed traces of possible ALS still, and now I am waiting for some clarity. Again. 8 NCV/EMG’s, a misdiagnosed spine problem that resulted in 5 level cervical fusion, misdiagnosis of BFS, and radiculopathy, and still…nada. They even snatched half of my thyroid to insure that it wasn’t cancer causing my troubles. But I get so exhausted, validated atrophy through 2 muscle biopsies, and all the typical symptoms.  Just slow progression, and that is why the professionals have hesitated to give me a firm diagnosis.

Don’t give up.  The good thing is that you are talking about it, how you feel, what you think. That is probably helping you, and others, get through this more than either of us know. The good news is when they have a difficult time with a diagnosis, it normally means your progress is slow. I read a study about 2 months back on 3 different ALS patients still walking at 16 years. Never stop hoping.

[Patricia]

John, thanks for sharing this information. It gives me a little hope knowing that some ALS patients can continue to be mobile for 16 years. One of the biggest fears about this disease is the fear of the unknown!

[Lisa Ryan]

Thanks John for the very thoughtful reply.  Isn’t it unfortunate that it is such a long process when the doctor cannot identify what the problem is ?. I’ve only had one muscle biopsy but I’m curious if you’re willing to say what they found on your MRI that looked like als?  This situation has to be taken day by day, when you’ve been in virtual uncertainty for years about what is going on in your body it’s very scary and depressing and the feeling of helplessness to me is overwhelming.  It’s sad I can’t feel better about my Dr but I just don’t know why it all takes so long to get any diagnosis.

[Deleted User]

In a brain MRI, they can ID an area called the Corticospinal tract (CST), which is the  part of the brain that controls motor function as it trails up from the spinal cord into the brain. When they see hyperintensities in that tract, it can show that there is something wrong in the motor neurons. It is not exactly definitive because many different conditions can cause CST  hyperintensities.

My MRI showed spots of white in the upper most sections of my CST, and not much  in the lower part of the brain stem. They have not told me in specific terms, but they did add ALS to the Diagnosis (where before they said it was possible ALS, and put MND is my records).  Many times motor neuron disease is not so much distinguished as a specific disease I think, and as they refine the diagnosis it becomes more specific.

 

if you google “als and brain mri’ then check the images you can see what it is. knowledge is power!

[Isabelle Z]

What are the diferents effects if edaravone and how can you say someone that it does’nt wirk ( mon assurance vient de me refuser une deuxième cure de 6 mois parce que ma maladie avance plus vite avec edaravone que sans edaravone)but my doctors say diferents informations, finally i understsnd that it is a question of money and not of science