Questions to ask neuro

[ShiftKicker]

Hello-
I have read your sticky on what to post, and have viewed many of your past threads. There is a huge amount of information within this forum, and I am full of admiration for those of you who are struggling with your MND and are still keeping patience with those of us who have not yet been diagnosed with a particular condition or disease.
I am in the position of having upper motor neuron symptoms with no visible atrophy of any muscles. My gp held off on referring me to a neurologist thinking I was possibly suffering from the effects of a bad flu when I went to her with left leg dragging/foot drop. When the leg became progressively more spastic, she referred me to a neuro ophthalmologist with the thoughts that perhaps I had MS. At our initial exam she flat out told me she was not convinced it was MS and ordered many blood tests to rule out a variety of conditions. All came back clean. She also ordered an MRI of my neck and head- which came back with no signs of demylenation. Again, no MS signs. I have an appointment with her again this Friday to discuss what to do next.
I was an extremely fit athlete- 18 hours a heavy exercise weekly in training for my sport. I am 42 years of age with no past health issues other than sports injuries- strictly mechanical and all resolved with physio. I went to my physio last week to ask for some exercises/stretches to help me with the leg spasticity and gait issues I am encountering. I feel my uneven gait has thrown my whole alignment off and my shoulders and neck are now cramping as a result. When my physio gave me his assessment, he was concerned about marked hyper reflexes on my entire left side, and the "brisk" reflexes on my right. He noted weakness on my left (upper and lower) limbs in relation to my right. I was also unable to lift my left heel up into tip toe position no matter how hard I tried. He also mentioned the was a general loss of condition that was not normal for me in his experience. This guy knows my history and knows what I am capable of, and his concern was strong. He also ruled out MS as a potential due to my normal skin sensation and lack of tingling or pins and needles. As I had had no actual incident of injury, he ruled out impact injury to the spine.
My concern, at this time, is that my core is getting progressively weaker and I am having to rest my chin in my hand while at my desk to support my upper body if I am leaning forward. Combined with the slowly increasing leg spasticity (5 months now), and "slow" hands, and with constant rippling under the skin on both my legs, I wonder at possible MND. What questions do those of you with experience in the MND medical/testing period recommend I ask the specialist when I visit her on Friday to ensure I have all possible knowledge and to assure myself this is not motor neuron disease based, or to help narrow things down further? All I know at this time is what it is NOT, and I would like to ensure I am doing everything I can to make sure I get quick answers.

Thank you

 

[Nikki J]

Sometimes there are not quick answers.
But what to ask? What does my clinical exam show? Based on exam and tests what is still in your differential? What tests do we need to find out? And then it is fair to say if it has not been mentioned I am worried about MND. I would also ask for a recap of what is completely ruled out. And if it seems appropriate ask if if you need to be seeing a different specialist since she is a neuro ophthalmologist

 

[ShiftKicker]

Hi Nikki-
Thanks very much for the informative reply. I appreciate the straightforward wording of the questions- I never would have thought to phrase things in such a professional way. Much appreciated. I do also plan to ask if an EMG is called for. I do have a nerve conduction test booked- but this was booked by my gp, with little urgency, and so is not till July. My neuro opthamologist seems to get speedier response to her requets for tests- my wait of 5 days for a non emergency MRI is a miracle here in Canada.

Thanks again

 

[ShiftKicker]

Just a quick update-
I was lucky enough to have a fresh faced, knowledgable and enthusiastic neurology resident sit in on my appointment with the neuro opthamologist on Friday. She also gave me a thorough physical neuro exam, took my history again, reviewed my cervical/brain mri, vep test, and went through all the "looking for optical signs of MS" with the opthalmologist there to give her pointers/ ask her to describe her findings. The upshot of this exam was further blood tests (we're talking obscure tropical diseases and heavy metals here) and a requisition for an EMG/ nerve conduction test- which are to be rushed. Also a call to fast track me for an urgent Neuro exam with an experienced neurologist next week. I was too shy to ask for possible causes (I felt like maybe they thought I was a hypochondriac and I have a deeply ingrained desire to not be a bother due to a seriously Scots upbringing) but feel like perhaps there is basis for my concern, given their urgency in getting me in to see a neuro asap.
Thanks again for the advice, Nikki. I had my list of questions with me, clutched to my chest and ready to go, I swear. When I see the neuro specialist next week I will actually gird my loins and open my mouth to ask them.

 

[ShiftKicker]

Moving along in the diagnosis path-
Referral to a Neurogenetics clinic at the local university. The neurologist gave me a quick and dirty EMG in 3 places and found "degradation" in at-rest muscles in my leg. Not sure what that means, but was enough for him to refer me on to a clinic that deals with familial neuro diseases, Parkinsons and motor neuron diseases- and to order blood tests for some really obsure stuff. What I have run into with the 3 specialists I've seen, and with my GP, is a refusal to give any details of their findings or an explanation of the mechanics of my symptoms, just vague "well, can't be sure" statements. Has anyone else run into this while moving towards a diagnosis? I'm Canadian, so I'm unsure how the medical system handles patient charting and info- and if I have the right to demands copies of everything. I don't wish to antagonize anyone as I've been very lucky to get in to see specialists early and want to make sure I don't get labelled as a P. In The A. Or an hysteric.
I am, however, completely sold on Baclofen. The neurologist recommended I take it for legs spasms and I feel like I can breathe again, as well, a huge reduction in leg stiffness. Just have to be careful going down stairs.

 

[lgelb]

Perhaps Paulette can weigh in on your question -- she is a nurse in Canada. I don't know what HIPAA analog or other regulations apply there. I would certainly think you'd have the culturally accepted rights essentially as in the US.

From the communication standpoint, generally speaking, if you want to request more info, think about getting to yes: "I would find it helpful to know more about what the possible diagnoses are" or "Can you tell me..." it's hard to say no since they obviously can-- etc.

 

[Dusty7]

" I was too shy to ask for possible causes..."
"...a refusal to give any details of their findings or an explanation of the mechanics of my symptoms, just vague "well, can't be sure" statements.""
"...want to make sure I don't get labelled as a P. In The A. Or an hysteric."

Sounds like, in your caution, your are not asking the questions that are in your mind.
First, write down the questions that you have and make sure you don't know the answers.
Second, practice asking them using Laurie's phraseology above.
Third, take the written questions with you to see your neuro and ask them.

No doctor will think you're a pain in the a**, if you ask questions about your health as politely as this. You, or your insurance, is paying them for the answers and they have a duty to give you the answers.

And, yes, check with a Canadian about your laws about what you're entitled to. In the U.S. we can get copies of our EMGs, blood test results, etc. Good Luck

 

[ShiftKicker]

Thank you for your responses. I did go back and ask for the specialist reports from my GP. Having read carefully through all the various test results and neuro reports, it all seems to boil down to the neurologist's reason for referral to the Neurogenetics clinic at UBC as "HSP or Primary Lateral Sclerosis". All the myriad blood tests have come back negative (or positive, as it's good to know I do not have syphilis!) and the MRI shows no structural reason for symptoms. My only issue is that everyone seems to have had extensive electrical diagnostic testing done, but my session with the neurologist consisted of a very basic 4 location emg test on my most affected leg. Surely there should have been more for such a serious conclusion. I have yet to hear from the new clinic about an actual appointment other than "We got the referral, we will call you to book soon."
What tools have those who have been waiting for a proper diagnosis used to deal with the anxiety that arises from having to wait? And wait. And wait. I'm not convinced PLS is the correct diagnosis. And I KNOW HSP is not correct.

 

[Nikki J]

Again, you must be prepared for the fact that there are not always quick answers. It may be that your next doctor will want to do more testing. If it is PLS they are considering it would be a very provisional diagnosis for several years as they watch for lower motor signs. I am curious, why do you say you "know" it is not HSP?
I know it is hard to wait. People handle it differently. Some can distract themselves by keeping busy. If it becomes overwhelming talk to your gp about possible medication

 

[ShiftKicker]

Hi Nikki-
HSP indicates a familial pattern of walking disorders from what I understand- and there is absolutely no history in my family on either side. Everyone seems to have been alarmingly vital and healthy, aside from the heart disease in later years.

 

[Nikki J]

There are people who end up with the HSP diagnosis without family history. There are recessive forms I believe Don't completely rule it out on that basis

 

[affected]

I have a close friend with HSP and zero family history.

I agree with Nikki you will have to be patient. PLS takes up to 5 years to diagnose.

 

[ShiftKicker]

Hello- thanks for your reply. That's really interesting about HSP not neccessarily being "H". I shall hold out hope. Which is kind of a weird thing to hope for.

 

[ShiftKicker]

A quick question with regards to something I'm sure I saw somewhere in the forum. I did a quick forum search, but didn't find reference- improvement of umn symptoms when you first get up. I'm trying to figure out if this is due to taking even MORE baclofen than usual the last couple days, or if this is a possibly a symptom that rules out mnd. I swear I saw something about this in one of the other DIHALS postings, and would love love love to take this to the neuro to ask about possible alternative possibilies other than what she's officially leaning towards, as noted below.
I've received a non diagnosis of "PLS as a differential diagnosis" while the neuro orders even more tests, inluding another full body (torso?) ct scan to rule out paraneoplastic syndrome, even though all blood tests rule this out so far. HSP is off the table due to mild upper body/possible bulbar involvement- which she feels precludes that condition.

 

[ShiftKicker]

Also, thank you in advance.