"You do not have the right to healthcare"

[Clearwater AL]

On the last page of an EMG report will be a summary/conclusion paragraph, as Karen referred to.

 

[KarenNWendyn]

Absent or decreased reflexes and polyneuropathy point away from ALS. That’s good news! Fasciculations are not important for diagnosis as they are common and nonspecific.

In diagnosing ALS, history and physical exam (by a neurologist, preferably a neuromuscular disease specialist) are most important. EMG can help confirm ALS only if history and physical are also suggestive. A normal EMG would rule out ALS.

What did the neurologist say about your physical exam other than loss of reflexes?

There really are so many possibilities on the table for you at this point that it comes down to good communication between you and the neurologist. I’m sorry that seems to be missing.

Btw, the avatar picture is of my former Irish Terrier who is now chasing kitties in doggie heaven. Yes, “terrorist” seems apt.

 

[KimT]

I think you have quite a few things left on the table besides motor neuron diseases, especially since you haven't had the rest of the MRIs, a lumbar puncture or muscle biopsy.

The thing that jumps out is the active changes are limited to one area. In ALS, it's usually widespread and they show up even before weakness.

The other thing that leaves me feeling hopeful is that your EMG was not done by a neuromuscular specialist (I'm guessing from your post.) When I was going to Mayo regularly, I let a new doctor do an EMG. He was certified in general neurology and was just beginning his training in EMGs/neuromuscular neurology. His EMG looked entirely different than the trained specialists. EMGs are both an art and a science.

Regarding your attempt to get affordable health care, please don't think of it as begging. Think of it as asking others with more financial resources and doctors who are compassionate to give you a hand.

I think quality health care SHOULD be a right in a Country as wealthy as ours. We've neglected the poor and cut the taxes on the rich for long enough.

 

[DeOly]

Yes, absent reflex, but no neuropathy on last EMG. The Doc who did EM G is neuromuscular, thankfully. My experience with neuro at free clinic has been horrible. I reviewed my records after great difficulty getting them, and was shocked how poor they were. My suspicion is that he has difficulty navigating the computer in clinic(I have watched this) so he does not record notes. So each time I went back was like the first visit. It also looks as if cut and paste is a regular, since each visit lists physical exam which was not the case.
But hey, what can I expect. Sad because people using a free clinic do not have option for second opinions. I only got into the neuro clinic from referral from ER doc.

 

[DeOly]

Is the damage on EM G not widespread? Looks as if half the muscles tested showed something. In MND does the damage in the individual muscles show damage with all things combined? Where on my results for example one muscle only fascic, another only fibs and pw and others just duration and polyphasic with no other.

 

[DeOly]

Hey, I want to thank everyone for feedback. It does help to converse and to get some info. I feel more at ease now and will wait to see how the next few months pan out.
If nothing after that I will be doing a go find me for that one way plane ticket to Finland for medical asylum.

 

[Nikki J]

You are correct that the scattered pattern you report is not what is meant when the word widespread is used for ALS. ALS EMGs show multiple muscle groups showing acute and chronic denervation. As far as I can see none of your muscles showed acute and chronic changes together

Good luck. I hope you can find an answer

 

[DeOly]

So unbelievably frustrated with this free clinic. It's a battle of attrition. Does anyone have thoughts about what could be causing what is seen on emg if not from spine damage or mnd? Was the emg a sufficient amount of different muscles? The progression of atrophy was very slow in legs, but is spreading much quicker to arms and back muscles. I just asked for an apt. And it will be another 6 months, then it they allow tests another 4 to 6 months of tests at all. I've had abnormal MRI brain, abnormal emg, abnormal lyme results but not cdc criteria positive. I'm barely able to get but now and have fallen behind in many areas, if the progression continues at this pace it is certainly faster then the clinic I will no longer be able. Any thoughts would be helpful.

 

[KimT]

What were the abnormalities on the brain MRI? Did it rule out MS?
Did the clinic do any blood work like an ANA to check for autoimmune diseases or B-12, or VitD?

I'm very frustrated for you.

 

[DeOly]

MRI =mildly extensive scattered bihemispheric white matter T2 prolongation, greater then expected for age. Differential, chronic small vessel ischemic changes, chronic gliosis , demyelination, and encephalitis such as Lyme disease.

I was told by neurologist that the MRI was normal. I understand that this differential from radiologist is fairly common. I had reviewed MRI and asked about the differential, asked if given my symptoms why he was not concerned about findings and if it was normal for that amount of change from an MRI 4 years prior. I realized at this point (my 4th visit and over one year later) that he had not reviewed the over 100 pages of my medical records of previous doctor and that he had not viewed images of current MRI since he asked for my copy. I still have not received answer years later.

Just recently a different neurologist (that I got access through referral from ER) said the lesions do not look like MS, but she did not have my medical records to view older MRI. She ordered the EMG.

Yes, many blood tests, all apparently normal. The Lyme test which was not easy to get, came up with two positive IGG, cdc requires 5. However the up to 50% inaccuracy of the tests is of some concern. I asked how I could have IGG specific to lyme, and no lyme disease? He was very confused about this question, he simply, angrily said, "You don't have lyme and if you did there is nothing to treat it". Which of course is incorrect, there is treatment.

I have history of tick bite, rash, and lived in endemic NY and MD. I personally think this should be suspect #1since soon after tick bite rash i became ill(this is clear in my older medical records), but the doc is unfamiliar with Lyme. I want to have another test by a different lab, but it is expensive and I live in extreme poverty.

The attitude in health care about Lyme is shocking. I also would like to mention the difference of someone who has or may have undiagnosed Lyme and chronic lyme which would be someone who was diagnosed and treated but still has symptoms.

I have no way of knowing, all I do know is my failing health and symptoms.

I have a follow-up next week with local hospital neuro clinic, but unfortunately the MRI of brain cervical the neuromuscular ordered was sent to free clinic who did not authorize it. Now I will be going to appointment without, which they need. Another 6 months to see free clinic neuro, who then may or may not do anything.

I find it very strange that the free clinic neuro ordered emg on three separate occasions, each time being told by RN that they had no access to EMG. I asked about local hospital neuro clinic, RN said they were not taking patients from them. But I swindled my way in through ER, and now with the EM G in hand, the free clinic doc not ordering MRI and will not see me for half a year!!

Months and years to by, is there permanent, irreversible damage happening? Will my muscles grow back? Will the brain for lift? Who knows, but the battle of attrition is not on my side.

Sorry for being so blue, I thank you for responding, it does help to vent my frustration.

 

[DeOly]

I had another post about questions of weakness. Was this edited for some reason?

 

[Nikki J]

You have no posts that were deleted that I can find. Sometimes I think I have posted something and it doesn’t seem to show up ( I think I neglected to hit the post button but not sure)

That said, please post all your questions on this thread. We ask undiagnosed people to keep their posting together as it makes it easier for PALS and others to see everything together

 

[lgelb]

If you really want to try doxycycline empirically for a month, not knowing how long ago your tick exposure was, any doc can write it for you and it's pennies a dose. I hope you are not spending a lot of time reading the polemics of the "Lyme-literate," because that is a complete waste of time. I do know from personal experience that fewer bands than the CDC threshold, which is itself based on aggregate data, does not necessarily signify active infection.

As others have noted, the EMG does not lead to suspicion of ALS, the currency of our particular realm.

As for the C-spine MRI your neuro is looking for, sounds like s/he is going to have to advocate for it, not just hit "send" on the request. I would certainly ask at your appointment what differentials are on the table at this point, and if/how else they can be narrowed. For example, even plain film of the neck would convey some information. But I would make sure the office staff know before the appointment that the MRI was denied, a fact often overlooked and one they can try to rectify a couple of ways before you show up.

Best,
Laurie

 

[KarenNWendyn]

Laurie is correct in that there are a lot of false positive Lyme tests, especially for people who live in areas with a lot of ticks. This is why the CDC requires multiple bands on Western Blot for diagnosis. If any doubts remain, you can ask to see an infectious disease specialist.

White matter lesions on mri scans are also fairly common and nonspecific.

 

[DeOly]

Lyme is very controversial. If I had gone to the doc when I had the rash he would have been treated for lyme. Not only false positive but also many false negatives and seronegative. Not easy to get the antibiotics, especially when my neurologist said there was no treatment for lyme. Thanks for the advice on questions for next visit, hopefully the list is getting shorter and not MND.