Just need something...

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sunnyfromtexas

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Good morning all,

It seems ridiculous for me to post and I honestly have no idea why I am, but here goes...

In April, I was sitting in the back yard and pointed to something and felt a shooting pain up my right arm, a week later at work I started having ice pick headaches so naturally I end up at my GP who sends me for a MRI and I had two mildly herniated discs. No worries, heal up from that, but... I didn't. MRIs of brain, cervical spine and lumbar are all unremarkable now. Appointments with ortho and neurosurgeon all good minus some uneven weakness and muted reflexes on my left side.

I am still experiencing progressive worsening symptoms... I get referred to neurologist.

Neurologist spends an hour and half with strength tests, push pull, balance, vision, tip toes, heels, etc. Finds a loss of peripheral vision, possibly photosensitivity, marked weakness in grip and muscle on left side - ankle, shoulder, elbow, etc. and is concerned how my tongue twitches and pulls to one side. (Didn't even know that was a thing??...)

Extensive labs with 24 urinalysis to include antibody panels, metabolic, liver, CK, all of it.... Receive a message from the neurologist's office - all good, maybe my cholesterol is a little high. You do not have myasthenia gravis.

Orders NCS/EMG. Another neurologist does the NCS and RNS and says "I know what it is! (excitedly) but I have to do the EMG."
Does the EMG.
"You have myasthenia gravis! There is no neuropathy or myopathy"
"But my labs were negative?"
"That can happen in some cases"
"So no ALS?"
"No, myasthenia gravis!"

Ok, so I am relieved! He brings in my neurologist and she takes a look, he seems like he is trying to convince her, pointing. She looks at me stoically, does not confirm the diagnosis of MG, and says "we will discuss at your appointment after I review the results." Ok, so that wasn't heartening, but at least I have an answer and don't have to be scared sh*tless.

I go home, tell my husband, we look it up, it makes sense so whew! Then he asks is that why your left side is so much smaller that your right and all your muscles are atrophying. Me, just noticing the fatigue and weakness, starts a physical inventory and sure enough. My calf, thigh, buttock, chest/breast, hand, forearm and bicep are all significantly smaller, my shoulder drops. In the last few days, I have started tripping on basically everything. Where I did have some energy and strength in the morning, is now almost gone. It takes so much effort just to eat.... I have lost 20-25 pounds in a few months. My ankles are weak to where my feet are slapping the ground, I feel like I almost have to drag my damn leg sometimes. I can't seem to catch my breath.

I look back now and at the beginning of the year is when the issues in my left leg started just a little bit and I didn't even mind the twitches and cramps in random muscles.. I figured it was just getting old... I don't have any biological family close enough in relation to determine genetic possibilities right away.

Anyways, I'm not looking for a diagnosis from ya'll. You all have enough going on. I have my follow up appointment at 3:30 today. I don't know what to expect. I don't want anyone to go with me. I just want to know what in the hell is going on and why. I have to have some help, medication, a plan, information, just something....
 

Nikki J

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Seronegative mg certainly exists. I believe if you had the blood work with the reflex testing and it was negative it is about 5% of cases. Let us know what the neurologist says
 

sunnyfromtexas

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Thank you Nikki. I am going to ask about the other types of MG and their confidence in diagnosis and I'll let you know how it goes. I'm about to leave work for my appointment and I feel completely exhausted. Physically, mentally and emotionally.
 

sunnyfromtexas

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The currently treatment plan is that I have is double seronegative myasthenia gravis per EMG. I have be prescribed 60mg of mestinon 4 times daily. My chart lists the possible diagnosis of myasthenia gravis, motor neuron disease and dysautonomia. I will have a chest CT to look for thymoma sometime late this week or next and am under intense drug monitoring.

I have a second opinion scheduled with a neuro that I saw 5 years ago that I had a perfect NCS, EMG with as a comparison. There are a few concerns I have with the consistency of my neuro so peace of mind is what I am looking for.

I think the mestinon is doing something, but not much or maybe less each dose, but I will keep on it. I don't have pain unless I cramp up, but it's like it cramps in one spot, moves on and just twitches/flutters after that. My biggest concern is my hands... its harder and harder to type and its essential to be being able to work. Every day at work, someone asks if I'm getting worse or if I'm okay or need to go home.

Not asking for anything... Just kinds tracking where I'm at until I can get some neuro to completely rule out MND. After this next neuro, I'm going to request an appointment at a MDA/ALS clinic.
 

sunnyfromtexas

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Well, that didn't last long. Neuro brought me back in yesterday after checking to see how I was on the mestinon...

She now suspects ALS. Being referred out to UT Southwestern. Upped my mestinon to 90mg per dose. Doing great at killing my stomach, not much else.

Was told to hope my chest CT shows I need to have my thymus removed.

Is there way to speed up this diagnostic process so we Know Know.

I'm 34, a wife, a mom of 6 from 7yo to 16, dozens of people and kids rely on my home to come and have dinner or to find support of some kind... we are the house you go to when you need help... now I don't even know what to do...

My family is just aware of the referral and not of what it could mean.

Oh, and I've started to choke and swallow air. (Just frustrated, sorry)
 

lgelb

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This does seem confusing. If MG were diagnosed based on the clinical picture, labs [albeit negative], and EMG, it is hard to understand how ALS got back into the picture and your mestinon was simultaneously upped. If she were testing the hypothesis that you have MG by using the higher dose, I would not have expected her to mention ALS again as yet, esp. if the EMG doesn't support it. Anyway, I'm glad you're going to UTSW but understand how nerve-wracking it all is.
 

KimT

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I'm so sorry you're going through all this. When is your appointment? I'm hoping the diagnosis will be something other than ALS.
 

sunnyfromtexas

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ALS was in the picture from the beginning of seeing her. We/I/Her just avoided talking about it. It has been listed as the top possible diagnosis in my health record every time. She didn't agree with the interpretation of the EMG from the other neuro but didn't explain (am going to get a copy for myself this afternoon so I can see) but wanted to treat as dsMG to see if it would work. She upped my meds in the hopes that I would respond to the higher dose, but told me to discontinue the side effects are too severe. I'm staying on them with hope.

CT Monday and she and I are hoping for it to me abnormal, enlarged, tymoma or thymic carcinoma that only involves the thymus. Fingers crossed (this is weird to hope for)

The biggest fear I have right now is the weakness and starting to have a lack of coordination in my hands. I wanted them to do something and then they don't or jerk and spaz. I work in an office for a living and I cannot lose the ability to type. I can avoid long conversations for the most part with the slurred speech but my hands are essential.

As for why she is referring me out, she wants a full body EMG with the tongue included because the observation from 5/19 to now of progressive clinical weakness in the left side feet/legs, hands/arms (from 5/5 May 19, then 4/5, now 3/5 and 2/5 in some spots) and involvement of my right side to 4/5 and my neck to 4/5) so no area on my body is how it was in May.

Other notes in the chart thing:
Observed slurred speech in exam
Romberg from mild to positive
Check puff intact to weak
Cough strong to moderate

I don't know what the rest of the chart means like UE>LE or HF/KE, DF/PF and there's other stuff we talked about like neck drop forward and foot drop and tripping and swallowing air.

As for the appointment, UT said I couldn't get in until 6/2023 not even reviewing the record so I found someone experienced in the diagnostic testing that could do what ever my neuro wanted hopefully in earlier September unless I get moved up on a cancellation.

I have calls in all over the state for the MG clinics and the ALS clinics just so I'm in line for a second opinion somewhere.
 

sunnyfromtexas

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Hi everyone. Does anyone have any suggestions on life insurance?

My neuro has now put my diagnosis as motor neuron disease, unspecified, it is only listed on my chart and on the referrals. They have to mail the EMG results but should have my CT back today-ish.
 

Nikki J

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I believe it is too late for any insurance that requires underwriting. No question insurance exists but you would have to weigh price, payout and terms especially exclusions.

if you lie and they find out ( as would be likely) they won’t pay and if they have you sign a record release the code for mnd will almost definitely show. Sorry
 

sunnyfromtexas

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Smh..SMH... thank you Nikki for all you help.

CT of thymus was clean...

I have found a lot of help with my GP now for referrals so that's good. Two other clinics can see me in about a month Austin Neuro and Baylor Scott and White and they are in network so there's something.
 

sunnyfromtexas

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Hi all who might be listening.

Now having seen the 3rd neuro and a EMG. He couldn't find anything. Completely normal NCS, RNS, and EMG.

After the last one that wasn't quite right but main neuro couldn't tell me why... So now I have no idea.

Main Neuro - suspects MND, but let's rule out neuropathy, myopathy and myasthenia gravis.
2nd Neuro - Myasthenia Gravis, definitely (thumbs up)
Main Neuro - I'm not sure so let's treat for myasthenia gravis
Main Neuro - that didn't work, possible MND/ALS, (throws up hands)
3rd Neuro - I have no idea what's happening to you, sorry (throws up hands)

I stopped taking the stupid Mestinon today after the EMG yesterday. I feel like I have a bit of my appetite back. yay!

I may not be able to
-use much of my left side, or
-walk very far,
-chew more than a few bites without it stuck in my throat or
-only take sips at a time so I don't drown, and
-have to sleep sitting up so I can breathe and not choke,

I'm just going to pretend everything is fine and forget about this whole mess until my husband hogties me to take me back to the doc.

Thank ya'll for listening if your out there. I really appreciate your time. It is so precious!! I hope that you have all the days, minutes and hours that can possibly be had and that they are as happy and joyful as they possible can be dealing with such an ugly disease.

Ya'll are wonderful! (And funny! I saw some other threads)
 

Nikki J

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This is clearly very confusing and frightening. Not all neurologists are created equal so it is hard to say who is more likely to be right. If you need to take a break it is very understandable but before pursuing this further do some research on credentials to decide who to see next. Generally speaking seeing someone at an academic medical center is a good idea when you aren’t getting answers elsewhere ( or are getting conflicting answers). Seeing the emg report from the mg diagnosis visit would be helpful as well as everyone’s clinical notes I would think. You are entitled to these in a timely manner by law
 

lgelb

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Weren't you referred to UT Southwestern? Or are you closer to SA? One of our members was diagnosed by Dr. Wong at Methodist SA recently.

Scott & White & Austin Neuro are something, yes, but not top tier academic centers where complex diagnoses are routinely made.

Of course, Houston has two very good ALS centers, at Methodist and Baylor.
 

sunnyfromtexas

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At what point do the symptoms of FTD show up? What are the first indications and how are the different than purely ALS and purely FTS?
 
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