Old 10-07-2017, 10:12 PM #16 (permalink)
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Default Re: Requesting Advice Please

Thank you Kim for your suggestions and encouragement. You're right, some pampering sounds like a great idea. I am not a vegetarian, actually my eating has been terrible the past few months while going to all these doctor appointments. Funny how now I look at things I haven't allowed myself to eat for years and I am gobbling them down! I'm pretty sure my B12 was checked, but I am going to go through my records and make sure.
As for the hormones, that's a great suggestion for the headaches. I am definitely dealing with all that right now in the mist of all this other stuff. I will work on getting to an endocrinologist.
Thank you again,
Jen
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Old 10-10-2017, 05:59 PM #17 (permalink)
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Default Re: Requesting Advice Please

Hi again,
I am so sorry to be a pain. I am trying to upload pictures of my EMG and Nerve Conduction studies but it keeps asking me for a URL. I am not totally computer illiterate but this is baffling me...any suggestions?
Thank you much,
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Old 10-10-2017, 06:04 PM #18 (permalink)
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Default Re: Requesting Advice Please

Not sure what your posting privileges are? When you hit reply can you choose advanced? And then find manage attachments then select the file. Please make sure for your own privacy you have removed identifying data
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Old 10-10-2017, 06:08 PM #19 (permalink)
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Default Re: Requesting Advice Please

Hi again, Thank you Nikki,
I received my records from Columbia today. If someone could look at them and tell me what they think I would be so grateful. I can't make heads or tails out of it. These tests were done four months ago. I have absolutely progressed in my symptoms. I know I keep reading tests can't really be done too early, but here's my question. When I look at the summary table for the EMG in the Recruitment Pattern section, what does Reduced mean? and in the Effort column what does Submax mean? I ask, knowing nothing about what I am looking at, but in the very muscles that say reduced or submax are the very ones that I first started my symptoms in that I noticed. Is that relevant? This is the summary of what the Dr wrote.

Motor nerve conduction studies of the left median nerve shows normal distal motor latency, low evoked response amplitude, and normal conduction velocity. The left ulnar, fibular and tibial nerves show normal distal motor latency, evoked response amplitude, and conduction velocity. Minimal F-wave latencies are normal in all the tested nerves.

Sensory conduction velocity and evoked response amplitude are normal in the left median, ulnar, superficial fibular and sural nerves.

All muscles tested by needle EMG are listed at the end of this report. EMG of selected muscles in the left arm and leg including biceps brachia, triceps brachia, abductor policies brevis, FDI, vastus lateralis, tibialis anterior and medial head of the gastrocnemius reveals no abnormal spontaneous activity, normal MUP form, and full recruitment on maximal effort or reduced recruitment on submaximal effort. EMG of left cervical, thoracic and lumbosacral paraspinal muscles reveals no abnormal spontaneous activity.

Conclusions:
This is an essentially normal study. There is no electrophysiological evidence of motor neuron disease, no detected fasiculations, generalized polyneuropathy, focal neuropathy or left cervical or left lumbosacral radiculopathy.

So, as clueless as I am about these reports, I know that "no evidence of motor neuron disease" is really good. But what does "essentially normal study" mean? What was off in my test then?

Thank you in advance for your insight,
Jennifer
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Old 10-10-2017, 06:32 PM #20 (permalink)
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In looking at all your reports have they tested for heavy metals, vitamin deficiencies, muscle enzymes? These are all blood tests.

Have you got the cervical spine mri report? Do you have nerve compression?

We attended USF and the doctor you mention was not on als clinic staff at the time we attended.

You should ask your doctor questions like what have they ruled out? What are the differentials? Why are they running test x and what does it rule out or confirm?

Headaches can be sleep apnea, tmj, grinding teeth, dehydration, low oxygen, or anxiety. I developed panic attacks in my sleep and woke with headaches every morning because I didnt go thru the sleep stages properly.
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Old 10-10-2017, 06:40 PM #21 (permalink)
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I have never seen recruitment assessment broken down into max and submax before and don't know what it means if anything. The examiner apparently was not concerned?

When you had the emg and they tested a muscle they had you increase effort partway before full effort pressing your foot into the examiner's hand for example). The partway resistance is the submax stage.

Recruitment has to do with the the motor units you use when activating a muscle. When you have fewer motor units working the remaining ones fire faster. They can identify this and call it reduced recruitment. You ended up with normal recruitment though when using the muscles fully according to the report.

The rest looked normal though and the no spontaneous activity and normal mups on the report are both good news. People with ALS have reduced recruitment, spontaneous activity AND large MUPs. My recruitment was just " reduced" no qualifiers along with the other things

Did you not ask the doctor about these things?
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Old 10-10-2017, 06:41 PM #22 (permalink)
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Default Re: Requesting Advice Please

HI Gooseberry,
Thank you for taking time with me. I have had extensive blood work. So much it would be a ridiculous post to list it all. But, I do not think I was tested for heavy metals so I will put that on my list to do. I did have MRI of all three sections of my spine and there were no significant findings. The only muscle blood work I think I had was CPK. It was 31. Which I know is low, but I have no idea what that means. Do you? Thank you for you suggestions, I am so appreciative of everyone's guidance.
Jennifer
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Old 10-10-2017, 06:50 PM #23 (permalink)
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Hi Nikki,
This is the first I am seeing this report. When he talked to me in his office that day he told me "You do not have ALS, it could be BFS or something hormonal." Then he suggested I stop seeing neurologists and see a rheumatologist and an endocrinologist. Then he finished by saying, "You don't have ALS now, I can't tell you that you won't have it 20 years from now." So, I did follow up with my local neuorologist a month later, I had the appointment scheduled, and he was the one that sent me to Columbia to rule out ALS. At that appointment, he did a clinical exam and asked about the tests. I told him I didn't have results, but told him what the Dr said. That's when he told me he wouldn't take ALS off the table.

So reduced recruitment is a bad thing. I don't understand why he sent me on my way then saying what he did. I knew then, and even more now since things have been getting worse, that something was very wrong. I will call my local neuro tomorrow and submit these records. And see if I can get his opinion on them. I have a packet for Johns Hopkins, do you think this will be enough to be seen?
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Old 10-10-2017, 07:03 PM #24 (permalink)
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Default Re: Requesting Advice Please

As I said since you only had reduced recruitment on submax I have no idea if it has any significance. Reduced recruitment alone even if on full effort does not equal ALS You did not have the other parts at all. Hopefully your local neuro knows the answer.

Regarding JH I don't know how strict they are with referral criteria. Send them everything and see what they say. Keep us posted
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Old 10-12-2017, 04:29 PM #25 (permalink)
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Default Re: Requesting Advice Please

Hi again,
I hope I am not posting too much. I just returned from my Neuro appt. I asked about the reduced recruitment and he told me without any other findings on the emg that it didn't mean much. Which ok, but not meaning much doesn't mean it means nothing. So, kind of still feel unanswered. I asked him if he would do another emg since it's been four months and I am limping now, and he noted atrophy in my APB, but he said he was going to order another brain MRI and a swallowing study and then decide. But at this point he didn't expect it would show much difference.

I asked why another brain mri at this point, as I have had three maybe even four in the last year or so, and he said since I have a few indeterminate white matter lesions he wants to see if there's any changes. I'm glad to have the swallowing study scheduled, that has been freaking me out a bit.

We talked frankly about ALS, and he told me that if this is what it is there isn't much anyone can do at this point and basically time will tell. I certainly don't want to rush anything along, and I respect what he's saying, but here are my questions please. And I pray I am being respectful to everyone reading.

Do I advocate for myself and try to get another EMG elsewhere? I can't imagine it wouldn't show changes considering the limp, the atrophy in my hand, and the twitching that's now more like thumping.

When you hear that starting medication earlier is the better chance that it can help, how early is early?

I am a veteran, and I have read that there are some benefits, obviously a dx is needed. Again, I am not looking to rush a dx, but at the same time I am unsure how much I advocate to push tests along and how long I wait. I feel like there is this balance between respecting my doctor and also advocating for myself. I am not sure how much time makes a difference. I guess that's my question.

I cannot find any info on the meaning of a low CPK. It was 31 about 6 months ago. Should I ask about having that again? Does it matter?

Lastly, I know you don't really comment on symptoms or presentation, but if anyone would regarding this symptom I am having I would be so appreciative. My left arm feels like there is this mild tourniquet on it up by my shoulder. Which makes it feel like the arm has been slowly becoming unresponsive. I am still able to put it through full ROM but it's like it's in slow motion. Almost feels like something that has a diminished blood supply, but that's not the case as the arm has regular coloring and temperature. None of my doctors know what to make of it.

Per advice, I have the Pulmonary appt set up and have a sleep study being scheduled. So, hopefully that will give some answers to my breathing and maybe the morning headaches. Thank you for that advice.

Thank you again for any insight,
Jennifer
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Old 10-13-2017, 11:47 AM #26 (permalink)
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Default Re: Requesting Advice Please

I thought you were pursuing an appointment at JH? If you go there they will likely want their own EMG ( most major ALS clinics do unless the previous one was done by someone they know to be expert)

The usual interval for emgs if following sonething concerning is 6 months

I don't think repeating the cpk is likely to give you any more answers.

The tourniquet feeling description is not familiar to me personally nor did any family member mention it to me.

I am glad you are pursuing the pulmonary and sleep issues

Early riluzole is supposed to work better but a few weeks are not likely to make too much of a difference

If your doctor has a good reason for doing the other things first ( and it sounds like he does?) I think you should let him. Advocating for yourself is good but we have seen here someone push for an EMG and delay an MRI when the MRI gave the answer
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Old 10-13-2017, 12:06 PM #27 (permalink)
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Default Re: Requesting Advice Please

Hi Nikki,
Thank you for all your direct answers. I confess I am double minded. My GP agreed with pursuing JH, but my Neurologist thinks the MRI, the swallowing study, and the Pulmonary appt at the end of the month are the path I should stay on. I know that I have to just be decisive and pick a path and stick to it. I guess I am just thinking about how the ALS clinic in Syracuse denied seeing me back in May, and I was wondering if I am reaching out to JH too soon and will I get denied.

I know nobody here has these answers for me. I appreciate the kindness everyone has shown. I guess the smart thing to do is to show up for the next MRI, the swallowing study and the Pulmonary appt. I will be able to complete all of those in the next couple of weeks. My local Neuro thinks that's the best course so I guess I need to stop trying to control everything and trust the process.

It seems so surreal sharing all of these fears and personal issues with people I don't know. I'm actually such a reserved person. It's how I know something is changing with me.

Thank you so much for giving me your time and consideration. I'd like to check back in a few weeks after these upcoming tests,
Jennifer
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Old 10-13-2017, 12:45 PM #28 (permalink)
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Default Re: Requesting Advice Please

I don't see why you can't do both? Keep working with your neuro and try for JH. It is not likely you are going to be seen so quickly that you won't have had your appointments that are scheduled. If JH did give you an appointment and then tests took you in another direction you could always cancel. I am sure that given even a few days of notice they can fill appointments. If you don't resolve things locally JH would be less of a wait

Yes please do let us know how things go. We hope for good news but either way it is helpful to others to see the eventual diagnosis
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Old 11-12-2017, 07:18 PM #29 (permalink)
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Hi again,
It's been a month. I've visited the forum here and there but have tried to take advice I've read in threads and not linger here. I just feel like there is more I could be doing. i know the waiting and seeing is part of the process, but there has to be constructive things I can do now.
I had the swallowing study, and I was told it all looked good. Of course I am happy to hear that, but it doesn't really give any answer to my swallowing issues. But the tech said now there is a baseline. So there's that.
I saw the pulmonologist and I did get a sleep study ordered. That is tomorrow night.
I saw the opthalmologist and my eyes are great, so none of my headaches are from eye issues, and I think my GP was checking in case for MS.
I had the brain MRI and there were no changes, so my neuro said he'd do another EMG now. I don't have a date for that yet. I wanted another one so badly, and now that I have had more progression this past month I kind of don't want one. I know that doesn't change what it would show, but part of me thinks going through the holidays without it might be a good idea.
My neuro did order PT for me because of my unsteady gait. I started that last week.
I have all the paperwork for JH and it sits on my dining room table everyday. I just can't seem to bring myself to sending it. My husband is in total denial that anything is wrong with me, and at first that frustrated me, but now I think I am trying to believe him!
I am still going on to see the Integrated Medical doctor next week. At the very least maybe I can start supplements, and at least have someone look at me as whole person and not just parts of me.

Does anyone have any suggestions for any blood work?
Is paying for metal testing worth it?
What about hot tubs? Infrared Saunas? My brother-in-law manages a dealer of both and keeps offering, but I feel like I am stuck. Would it help? Hinder? Am I overthinking it?
Thank you again for reading and any direction,
Jen
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Old 11-12-2017, 07:57 PM #30 (permalink)
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Default Re: Requesting Advice Please

I am sorry you are struggling. Testing for heavy metal poisoning can be ordered by your neurologist or pcp and should be covered by your insurance. Be wary of " special" tests that you have to pay for.

If you find hot tubs/ saunas pleasant and relaxing I don't think they will hurt you used properly. I don't think they will make the underlying problem better either

I doubt you would enjoy the holidays with the EMG hanging over you so if you are offered an appointment I would take first available and get it done. If it is fairly soon you might as well wait on JH and see if the EMG sheds any light

Let us know what the EMG shows
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