Looking for answers

[lisag]

Hi, I am a 60 year old health professional who felt very healthy until about four months ago. I have read the what to know before posting over and over and finally have the courage to post. I also lost my mother to ALS seventeen years ago.
My symptoms started with something that I never would have thought would lead me to this forum. Burning pain around both ankles and sensitivity to touch tops of feet. Went to PT convinced it must be coming from my back. Worked on core, body mechanics, and had clear MRI of low back.

Then, symptoms getting worse—
1. Nerve pains not in any specific nerve distribution below elbows and knees like raining random pains like nerves out of control. Including wrist and hand pain starting 6 weeks after original symptoms. And bad especially at night, limits sleep, taking gabapentin with some help. Usually doesn’t hurt to walk.

2. Tingling 2-3 toes both feet and into all toes

3. Spasms bilateral adductors, first three toes and 3rd and 4th fingers. Spasms day and night.

4. Decreased coordination left 3rd and 4th fingers. General arm fatigue. No specific weakness, just that coordination.

5. Slurring soft Ts and Ls….but not always. Fatigue?

6. Normal CMP, normal A1C, normal thyroid, normal B vitamin.

7. Saw OMT and PCP. OMT is amazing and actually knows me better and more on board for problem solving so he ordered ANA, high sensitivity CRP, cyclic citrul peptide AB-IGG. ANA positive, so ordered more testing that ruled out RA, Sjogrens, lupus, polymyositis. PCP then tested this week (upon my request) for Babinski and reflexes. She said Babinski is off? And reflexes less brisk. And referred me to a neurologist and rheumatologist, neither which I can see until at least October. And brain MRI which I can get in August.

8. I know usually burning pain is not an ALS sign but I’ve googled and stalked this forum enough (too much) to know it is sometimes a symptom people have mentioned even early. As did my mother, but many years before weakness, so not sure related.

9. I have not tripped or dropped anything, well except about 2 months ago but I blame it on moving too fast.

10. Am I anxious? Yes. Of course. Watched my mom go through many doctors and false diagnoses as no one believed she had ALS including her husband and 4 children. She was functional but slowed down significantly from her normal warp speed.

11. So, why am I here? I would like to know what questions to ask. I think I need to rule out MS, idiopathic peripheral neuropathy, some other demyelination process, not sure what else? Need to know why I have weird neuro signs: Babinski, coordination, speech, reflexes (but diminished, not brisk). Hope that I am barking down the wrong tree, but also have a lot of anxiety which is worse by not being able to see a neurologist in a timely manner.

Thank you so much. I hope I was clear and I hope my concerns are understood.
Lisa

 

[lgelb]

I'm sorry about your mom, Lisa.

Thyroid and electrolytes good?

You can do a telehealth consult with a Board-certified neuro and/or rheumie any day of the week to at least do some "bigger than a breadbox" stuff. Google [telehealth or telemedicine] neurology or rheumatology with your zip code.

I don't think you have ALS.

 

[lisag]

Thank you!
Thyroid and electrolytes are fine.
Love the telehealth idea. Thanks again.

 

[lisag]

Update: and apology that this is long

Had brain MRI which was fine, so no MS and no brain tumor

Saw a neurologist: got in very quickly, which I thought was a good thing as my PCP told me she requested an ASAP consult. Went to this physician who saw me for 5 minutes. I never moved from the chair by his computer. He checked strength in sitting, it was all good as I expected. He made sure I can touch each finger to thumb and checked sensation, all intact. Checked reflexes upon my request; said they were fine.

I did ask about left hand coordination and what I perceive as thenar atrophy, he did not look at my hand as he was done.. He said, "You do not have ALS, go on vacation." I was so shocked I didn't bring up tongue/talking concerns. I did say, "Thank you, but can you tell me what is going on then?" He had no answer, but interestingly did keep the appointment for EMG in late August.

I had bad feelings after this appointment, but was so happy to hear him say you don't have ALS that I didn't process it until later. I mentioned to a couple coworkers (I work in rehab in a hospital setting) and was told I need to consult another neurologist (tough as he is the only one in town) as they had not so positive comments about this physician from previous neuro patients who had been referred to them from another neurologist after a negative experience with this neurologist, and did end up having ALS or another neurologic disease.

I am not saying we all know more than a neurologist: but as hospital rehab workers we all do more thorough neuro evals on our patients than what I had done. I am nervous as he is the one doing EMG, and states he is going to test the legs, not the arm where I have the most symptoms.

I did return to my OMT who is still helping figure this out. He and I are focusing on cranial sacral work and relaxation and dealing with the anxiety. I am also going to speak to a counselor this week.

In the meantime, I continue with weird coordination/spasms of 3rd/4th fingers on the left hand and difficulty reaching in left pocket to grasp phone; weird shooting nerve "sensations" in arms and legs that feel like my nerves are out of control, spasms in adductors of hips and toes, and arm fatigue.

I mentioned in my last post the soft Ls and Ts sounds sounding weird to me. I thought maybe I was just overanalyzing this to the point of making it something it is not. But, then I started noticing that my tongue is tired and it too feels tingly (like the other nerve sensations) at times. I know that sounds weird as it is the strongest muscle in our bodies, right? And I love to talk, so it gets used a lot. I also have a voice that carries sound well. I actually have had to terminate phone conversations due to this "fatigue". People ask me to repeat myself and I am finding I am talking less. But, again I am thinking it is my perception and anxiety, as 98% of my talking seems fine, I think. Then at work the other day a coworker said, "Why did you say earl instead of oral?" I swore I said oral, but I also heard it sounded wrong when it came out as do a few other words, like "little".

My OMT says this is a disease of elimination and we have now eliminated rheumatoid factors, MS, brain tumor, B12, diabetes, kidney disease, thyroid disease. ANA was only positive blood marker. All this getting bounced around without an answer while I have decreased function of my body is depressing and scary and right now I do not know where to turn. I am doing all the anti-anxiety work to calm me while I wait, but it doesn't get rid of the nerve pain or hand coordination. OMT will refer me to a larger neuro clinic (due to only one neurologist in our town) but they want him to have a "diagnosis" so I am directed to the correct neurologist and he is as confused as I am by my symptoms.

Thoughts?
Thank you, Lisa G

 

[lgelb]

My thoughts are that you can't have it both ways. If the OMT-credentialed osteopathic physician is "confused" about your dx, they have no basis to imply that you have ruled everything out but ALS, which, of course, you haven't.

As for the EMG, if you are not going to trust the results for whatever reason, there is literally no point in doing it locally. But it is not unusual to do it in limbs that you think are fine, because certain abnormalities in asymptomatic areas are a hallmark of ALS, a progressive neuromuscular disease.

There are provisional/general dx codes that cover your situation (the whole point of a second opinion is to generate a definitive dx so that kind of consult does not require 100% confidence in one). If your OMT practitioner is unable to figure out how to refer you to a non-local neuro, I would imagine your PCP knows how. If your plan allows it, you can also self-refer. And if you didn't click with the neuro (obviously, no one can prejudge his competence from afar), he shouldn't have any hesitation in turfing you, either.

Again, I do not think you have ALS or any reason for concern for it. You haven't had an EMG to suggest any muscle or nerve damage, or from what I can tell, an exam suggesting clinical weakness or abnormal muscle tone, which is extremely reassuring. I also renew my suggestion about a rheumie consult because this does not seem neurologic to me and rheum stuff seems worth ruling out.

 

[Nikki J]

I would add ALS only becomes a diagnosis of exclusion when you have the clinical exam and EMG that suggest that which so far you have not.

There is no reason not to pursue a rheumatologist along with whatever neuro path you choose. If you will not trust your current neuro’s emg then as Laurie says go elsewhere. Sometimes insurance will not cover a second emg in a short interval so you want your tests to be ones you believe