Old 08-12-2017, 09:11 AM #1 (permalink)
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Default A few questions

Hello all. I have a few questions regarding my current plan of care but I will give you a bit of background first.

I am a 41 year old female and a critical care registered nurse. Several months back I began noticing some increased general fatigue but always wrote it off as stress due to my demanding work and home life. I take a B-Complex vitamin daily as well as 2000 international units of vitamin D. The real problem began when I started having some ataxia at work. Just simple, frustrating things at first like struggling to open my patients pill packets and missing IV ports when giving medications. I was able to work through them, however, they became increasingly bothersome.

I made an appt with my PCP after some cajoling from my husband and mother. He noticed some tremoring in my right arm and the best description I could give him regarding my fatigue was that it felt as if a weighted blanket was draped over my right shoulder. Doctor ran the gamut of bloodwork to rule out underlying disease and told me he wanted me to see a neurologist.

I first saw a neurologist on July 6th who suspected possible MS. He did an MRI of the brain and cervical spine which all came back normal. I have since seen him 3 times. He noted clinical weakness on right side both upper and lower limbs. Spasticity and hyperreflexia also noted. I have no arm swing on right side and my gait is abnormal due to poor dorsiflexion of right foot. I don't have any pain aside from some muscle cramping/tightening but nothing I would even take an ibuprofen for.

He did do an EMG on the right side but I will not have those results until the 15th. After the EMG he recommended I go to UofM and wrote a referral but did not call the hospital to expedite the process (They have no openings until April). He did not tell me anything about the test results, and honestly, he has a terrible bedside manner.

In the last 3 weeks, my husband asked me why I was slurring my speech and all I can say is that my tongue "feels heavy". I now have a tongue that deviates to the right side significantly and appears to have fasciculations.

My current neurologist also wants me to have a repeat brain MRI in a few weeks which will be 8 weeks from the first, again, to rule out MS. This seems a bit silly to me and, frankly, costly. I asked him for PT which he did write a script for after the EMG but he told me he was hesitant, that it could do more harm. I started PT this week and the strength testing she did revealed 50 percent less strength on my right side both upper and lower. This is my dominant side. I am unable to work or drive at the moment due to this deficiency.

I did get an appt with a second neurologist who is highly regarded by my colleagues as I feel like this current fellow is being elusive with me. I suppose I am just frustrated and much prefer to be on the other end of the healthcare system.

I am wondering if anybody here has any thoughts on questions I should be asking at my next appt.
Thank you so much for your time and God Bless.

Last edited by lgelb : 08-12-2017 at 01:23 PM Reason: paras
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Old 08-12-2017, 09:24 AM #2 (permalink)
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Default Re: A few questions

You have every right to request the EMG report and I would do that ASAP to know what is going on. If the EMG doctor is your current neurologist he could have given you results on the spot He had examined you, knew the history and could put it together. That may impact what you do next

Clearly something is going on and you obviously can't wait until April to know. How soon is the other neurologist appointment? Hope it is soon. We do have a sticky on getting a diagnosis at the top of this subforum which may help prepare.

What to ask: what is wrong with me? What are the results of my clinical exam? Any test results you need explained? If you are given a diagnosis, ask if there are any other possibilities, any more tests. If the answer is not sure ask what is still in the differential and what is needed to narrow it down

Good luck
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Clearwater AL (08-12-2017)
Old 08-12-2017, 09:37 AM #3 (permalink)
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Default Re: A few questions

Thank you for the quick reply.
The other neuro appt I have is for the 22nd. Sadly, neurology is the one specialty I do not work with as a nurse and just went with whom my PCP recommended.
I was a bit concerned with his attitude after the EMG which was done very quickly. He began with the nerve conduction and then did the EMG of both upper and lower right limbs and the entire test was done in under 20 minutes. Is that normal?
I just want to get back to work! I miss my coworkers and patients.
Admittedly, I cried at PT as I was surprised with what I was unable to do.
I figure I will go get my results with current neuro on the 15th and see what he has to say. Regardless, the following week I will go see the other doc and get his recommendation on the repeat MRI.
My PT is also pushing for me to get to UofM. Maybe the neuro will speed that up for me.
Waiting can be brutal but I am generally a pretty positive person so I have that going for me.
Thanks again!
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Old 08-12-2017, 09:44 AM #4 (permalink)
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Default Re: A few questions

I don't know about the length of time. A really skilled and efficient EMG doctor can do a lot quickly. I have had them for research and one of the doctors can do a whole body EMG very fast. That said, when there is a worrisome finding the usual thing is to map the spread by testing the surrounding muscles until clear. If someone has widespread EMG abnormalities consistent with ALS it can take longer
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Old 08-12-2017, 09:58 AM #5 (permalink)
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Default Re: A few questions

Thanks, Nikki.
I have no experience with EMG testing and while I fancy myself a skilled RN and nursing-related researcher I am not willing to go down the rabbit-hole of self-diagnosing.
It can be tricky but I am just trying to gather the objective data.
I will update you after my appt on Tuesday with current neurologist and EMG findings (if any).
Thank you so much.
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Old 08-12-2017, 01:26 PM #6 (permalink)
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Default Re: A few questions

I would bail on neuro #1 who is free with your time and money but not evidently with diagnostic algorithms. Don't do any more tests without knowing the results to date and with a full differential and a plan. Focus on an early appt. with neuro #2. UM is too far out to mean much right now but possibly neuro #2 can expedite a referral if/as needed.

Best,
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Old 08-12-2017, 01:52 PM #7 (permalink)
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Default Re: A few questions

I was able to self refer to Mayo Clinic and there was not a long wait.
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Old 08-12-2017, 02:22 PM #8 (permalink)
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Default Re: A few questions

Your symptoms are certainly concerning, though I would encourage you to remember that there are other diagnoses besides ALS that could fit those symptoms.

In the mix of all the things you are considering, I would encourage you to review your insurance situation. If your health/life/disability insurance is not where it needs to be, now is the time to look into getting those updated.

You don't want to mislead insurance companies for both moral and practical reasons. If they ask, you can report your symptoms, but you don't have a diagnosis to report. If and when a diagnosis is made, you would have few options for getting the insurance coverage you need.

If necessary, delay your medical appointments until your insurance situation is taken care of. If you do have ALS, getting a diagnosis a month sooner or later will not make any difference. Getting your insurance sorted out could make a huge difference.

Steve
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Old 08-13-2017, 06:27 PM #9 (permalink)
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Default Re: A few questions

Agree wholeheartedly with swalker.

Some insurance companies sell policies that do not require either a medical exam or a medical questionnaire. They charge a higher monthly price because the customers are riskier.
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