Old 09-12-2017, 07:59 PM #1 (permalink)
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Default Requesting Advice Please

Hi. I'm Jen, 48y/o. Pilates Instructor. I'm requesting any advice or direction as I am unsure I am on the right path. Thank you.
I've been on the diagnosis path since March 2017.
My symptoms:
Dec 2016
Right thumb shakes when I grip small objects
Feb 2017
Left foot begins cramping while at rest
Left arm/shoulder begins to feel weak in Pilates
Balance begins to degenerate
March 2017
Get massage and that night left arm/shoulder pain
begins and has never improved. Entire body begins
twitching and has not stopped since. Left Hand
begins involuntary contractions, and right hand
starts doing the same a month later.
April 2017
First Neuro Appt. Dr. orders neck MRI. No issues.
So he orders brain MRI. Finds minimal white matter
lesions, says no MS, possibly due to vasculitis, doesn't
expound. Orders EMG
May 2017
EMG/NCV --he doesn't give me results just says no MS
nor ALS. Yay, I'm happy
Two weeks later I'm on vacation and end up in Tampa
Hospital. Was having issues climbing stairs and air
hunger begins. Share the last few months of medical
issues and doctor admits me to run tests. Had another
EMG/NCV, and Dr. tells me Left Thumb has low
velocity?!? but doesn't share any other findings. Does
spinal tap which found nothing. Orders tons of
bloodwork And orders another brain MRI with same
results as first one. Tells me she
can't tell me yes or no if I have ALS and refers me to
Syracuse, NY, ALS clinic which later denies seeing me.
Late May my Left Leg weakens and I feel like I am now
negotiating my steps. This has gradually progressed to
date.
June 2017
My local Neuro refers me to my third Neuro at Columbia
to rule out ALS. He gives thorough clinical and orders
another EMG/NCV! That's three of these tests in 7
weeks! He tells me Left Thumb, median
nerve damage, but no ALS. Yay, again I'm happy.
August 2017
F/U with local Neuro. He performs clinical. Says I have brisk bilateral reflexes, neutral babinski, no clinical weakness, but he thinks ALS is still possible. Tells me to come back in November to see his Physican Assistant and schedules me for February 2018 to see him again. So, now I am just waiting. Since that last appointment my upper back and neck feels weak and the muscles around my mouth feel weak. I have also noticed swallowing issues and feel like my tongue is sluggish, for lack of a better description.

I have read the stickies and have held off posting all summer because I know that "feeling"weak shouldn't matter. But, as a Pilates Instructor for 20 years I am hyper aware of my muscles, my balance, etc...and something is very wrong and progressing. If anyone has any advice I would be so appreciative.

Questions:
1. If you are comfortable and the forum allows it, does anyone have any opinion on the Dr's I have seen?
1. Dr. Aamir Rasheed, Johnson City, NY
2. Dr. Rossitza Chichkova, Tampa, FL
3. Dr. Peter Kim, Columbia, NYC

Question 2
Should I seek another opinion, or does waiting till November to see the PA and then February to see my local Neuro sound like the right path?

Question 3
Is exercise a yes or a no with ALS? I have read so many conflicting opinions. I am not failing as of yet at anything, but things are getting harder and harder and my muscles, especially on the left side of my body, shake miserably when I do try to workout. I'm not sure if I am helping or hindering myself...

Thank you in advance for any feedback or guidance, I truly appreciate your time.
Jen
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Old 09-12-2017, 08:23 PM #2 (permalink)
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Default Re: Requesting Advice Please

Not to be a broken record, Jen, but letting someone get away with rephrasing or summarizing the EMGs doesn't do you much good, and gives us less to go on in attempting to answer your questions. You have the right to request and receive the full reports, likewise MRIs and labs.

But short answer, if all 3 tests only show a nerve problem in your L thumb, ALS is not very likely. Has the "air hunger" recurred?

Best,
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Old 09-12-2017, 08:33 PM #3 (permalink)
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Default Re: Requesting Advice Please

I tried to look up the three doctors listed. I found them all but there were not details on board certifications and fellowship specialty for any. I think the 2 men are general neurologists. The woman has cowritten a chapter on EMGs and lists neuromuscular as an interest. We do have people who have gone to USF so maybe they can chime in.

If an ALS clinic refused to see you that sounds positive! They apparently saw nothing in your records to warrant a consult.

As you know feeling weak but no clinical weakness is not how PALS experience things. I do understand your symptoms are worrisome and when you do something like Pilates regularly you can see the difference in performance ( I used to teach pilates too). Clearly something is wrong but the apparently normal emgs are a good sign.

Another opinion? I might try to see a neuromuscular specialist if you can get to see one. They often do screen by reading EMG reports but maybe your pcp can advocate for you. Presumably s/he sees the difference you describe

The rule for exercise my clinic gives is that if it takes more than an hour to recover fully it was too much

I hope you can find an answer soon. There are a lot of things that give odd neurological symptoms and almost all are much more benign than ALS. Let us know what the answer is
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Old 09-12-2017, 08:38 PM #4 (permalink)
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Default Re: Requesting Advice Please

Thank you Laurie for such a quick reply. I have gathered through other threads that I should be gathering all my records so I am working on that. The air hunger has neither gotten worse nor improved since May. Things like talking too long, which is tough since I am an instructor, leave me winded. However, if I stop and take a deep breath I can fill my lungs. I'd like to post again when I have gathered my records and if anyone would walk me through the EMG results that would be awesome. Thank you
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Old 09-12-2017, 08:55 PM #5 (permalink)
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Default Re: Requesting Advice Please

Thank you Nikki. I've been scattered but now I feel like I can make a plan. I will gather all my records and pursue a neuromuscular specialist. I thought Dr. Kim was one. And thank you for the exercise recommendation. I am happy to hear I can work on a plan for that now, too.
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Old 09-12-2017, 10:19 PM #6 (permalink)
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Default Re: Requesting Advice Please

ALS from what I've seen is pretty apparent if you have it. It doesn't present with pain but with something that doesn't work. It feels normal you just have a muscle that does not fire when it is supposed to. My leg feels fine, but when the heel hits the ground the toes slap the ground. No pain. no sensation of weakness, the muscle that slows my toes down just is not there. I have no idea how many times I was asked about pain. I have no pain other than from a loss of gluteal muscles making sitting painful. The reason I was asked was pain points away from ALS. Doctors are adverse to even saying ALS. It is that which shall not be named. If you have several drs saying no ALS, bust open the champagne, do cartwheels, celebrate the fact you have no need to be here.
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Old 09-30-2017, 04:43 PM #7 (permalink)
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Default Re: Requesting Advice Please

Hi again and thank you much for your time and consideration,

Since posting I have requested all my records from Columbia and have seen my GP. She is concerned and also told me a little perplexed. She is awesome and has ordered a thoracic and lumbar MRI and was amazed none of the Neurologists have done so yet. I have those on Monday. She also referred me to a Rheumatologist, Pulmonologist, and Opthamologist. She told me she is determined to be a part of figuring out is wrong. It's a blessing to have such a compassionate doctor.

I am wondering if anyone on this forum has seen an Integrative Medical Doctor and what their thoughts are one way or another? I have an appointment with Dr. Stram of the Stram Center in late November.

Lastly, I was able to go through some records from my local Neurologist. In April 2016 I was seen by him for sensory issues I was having. Those have since waxed and waned but what I did notice is he recorded my Deep Tendon Reflexes as 2+ and I had a Flexor Plantar Reflex. Now I am seeing him a year later for these new issues and he has recorded my DTR as Brisk Bilaterally and I now have an Equivocal Plantar Response. So it is concerning to me that these have changed. From what I read that's not good. Has anyone experienced that or does anyone have anything to add? I did ask my Neuro, he's the one who will not take ALS off the table, and he said that at "least it's good they are bilaterally brisk." Which is getting a lot out of him, he's rather stoic. It's like pulling teeth to get any thoughts from him.

I am truly grateful for your time, insight and consideration. I am lifting everyone here in prayer,
Jennifer
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Old 09-30-2017, 05:22 PM #8 (permalink)
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Default Re: Requesting Advice Please

Bilateral brisk reflexes are common and are usually considered a normal variant. I would not put any thought into how they were graded last time. Many things can affect them including but not limited to anxiety

A mute babinski is also a normal variant that can come and go.

I am glad your pcp is on board.

I looked at the Center Much of what they speak of for supplements you can perfectly well organize for yourself once you have an idea of what is wrong. In between the talk of acupuncture and supplements, though, I see red flags of chelation, detoxification , iv therapy and talk of treating a wide range of illnesses. You are not diagnosed with MND- I hope you never are- but we generally advise PALS to save their money. Many of us take different supplements after researching their side effects and proposed action. If we are lucky ( I am) our neurologists support this. You don't need a center to do this

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Old 09-30-2017, 07:31 PM #9 (permalink)
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Default Re: Requesting Advice Please

Second Nikki, DTR 2+ is exactly the same as "brisk," so no change there. Stram Center has all the hallmarks of a wallet-first medical philosophy. I wouldn't spend a minute or a cent there.
Best,
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Old 09-30-2017, 07:32 PM #10 (permalink)
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Default Re: Requesting Advice Please

I would first pursue a full pulmonary function test with my pulmo doc. This may or may not be related.

Also, I would not go to a functional doctor until I had a diagnosis or until they ruled out everything (sometimes it happens.) Once you have some kind of diagnosis, a functional doctor can give you some options. Just make sure you don't get taken in by therapies that are either dangerous or unproductive.

After you've had all your tests, come back and let us know the results. It helps others.

Many diseases and conditions, ALS included, present differently. Don't even worry about the brisk reflexes or anything Babinsky. My neuro has reflexes brisker than I do! He's a 3+ bilaterally and also has fasciculations. He doesn't even worry about these.
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Old 10-01-2017, 12:55 PM #11 (permalink)
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Default Re: Requesting Advice Please

Thank you Nikki, Laurie and Kim,
I appreciate your guidance and feedback. The Integrative Med Appt is 7 weeks out and I will most likely exhaust all the tests and specialists I am scheduled to see by then. So, I think I will hold onto the appt while I have it and see how the next 7 weeks unfolds. I have always been a twigs and berries and holistic lifestyle gal so it's not out of my wheelhouse but I hear what you are all saying and I think I need to keep myself grounded. My family and friends believe me and can see minor changes in my energy level, but aside from that I appear mostly "normal" so at this point this path has been quite lonely. So having all of you to communicate with is a Godsend. This morning in church I noticed myself leaning into my right side, because intuitively my left leg is just not feeling totally reliable. I can hear myself say that and I can see my family members making faces when I do, but it's very real to me. I also noticed when I was singing that my mouth muscles just don't respond like they have my whole life, and I felt winded singing a few songs. That's just all off. Ok, stop me! It is what it is and going on and on isn't going to change it. And I'm quite sure you all have better things to do than read my crazy! I'll check back in when my records arrive and when I have any more medical findings. Thanks again for being available and listening. Know you are all in my prayers, and I would love to give back. Certainly through donation, but if there is anything else that I could do for any of you, please let me know--seriously.
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Old 10-06-2017, 09:32 AM #12 (permalink)
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Default Re: Requesting Advice Please

Good Morning,
My GP called last night to discuss my thoracic and lumbar MRIs. There were no significant findings. Though she wants me to follow through with all the specialists she's referred me to she said she is mailing me the results and wants me to pursue Johns Hopkins. She talked ALS with me. Trying to stay focused on the next thing I need to do and not spiral.

I have a pulmonology appointment on October 31, but I was wondering if someone could give me their two cents. For the past few weeks I wake up with headaches. Sometimes migraine like, sometimes dull. But always a headache. And it lasts for most of the morning. I have tried everything I can think of to eliminate the headaches and made excuses why I am getting headaches, but I am wondering if I am not getting enough oxygen or releasing carbon dioxide. Any thoughts? I have noticed changes in my breathing. In Pilates we practice breathing exercises constantly, so I know my breathing is changing.

Thank you in advance,
Jennifer
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Old 10-06-2017, 01:52 PM #13 (permalink)
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Default Re: Requesting Advice Please

The only way to really assess that is to have a sleep study. Headaches can be caused by so many things- changes in sleep position, a pillow in need of a replacement, medications, stress, teeth clenching, etc. It's difficult for the folks here to give you any definitive answers on that. I do recommend you pursue a sleep study. It can give you all sorts of information and may give you some direction in which to further look with regards to your other symptoms.
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Old 10-06-2017, 06:02 PM #14 (permalink)
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Ok thank you for your suggestions. I will call on Monday and see if I can have a sleep study arranged. I'm not on any meds, so it's not that, but I will try a new pillow since that's something I can easily try. I would be lying if I said the stress wasn't building. So, I am sure that's contributing.

Jen

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Old 10-07-2017, 07:16 PM #15 (permalink)
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Default Re: Requesting Advice Please

Jen,

I've had morning headaches for years and I really think mine were related to stress and muscle tension. I was also very athletic and my job required me to spend hours and hours on the computer and writing each day. That further contributed to my headaches. Prior to menopause I also had migraines but those resolved after my hormones tanked. The reason I mentioned this is that I noticed your age and, at 48, my headaches were in full force. Perhaps part of your workup should include hormone testing. It can't hurt.

During all this diagnostic process and waiting, why don't you get a mani/pedi with someone who does massages of your arms and legs and maybe even a few light massages. When my headaches were bad, I couldn't let the massage therapist touch my neck but she massaged my scalp and that released some of the tension.

Stress and anxiety makes everything worse. When my anxiety is under control I can manage my pain. When I get stressed out, my whole body hurts. Even things like getting a dental cleaning hurts. This comes from someone who got fillings without novocaine.

You aren't, by chance, a vegan or vegetarian? Did they check your B-12 and folic acid?

I think there are a ton on things on the table, other than ALS, and I hope that is what you use to ground yourself.
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Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

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