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MommaTeresa

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First of all, I am in awe of you PALS and CALS who deal with people like me. I have poured over this site today to help me decide if I should bother you at all. I will be brief and hopefully DISMISSED in short order as well!

I am 52 years old, female. I was diagnosed with severe Rheumatoid Arthritis 6.5 years ago and am happy to say I am in clinical remission. I only mention that because the beginning of the symptoms I am currently having diagnosed began about a year and a half ago, when I was without health insurance, and I spent a good deal of energy telling myself "Oh that? That must be the RA!" (spasms in my L hand, then also L foot, ankle collapsing, knee collapsing, feeling of heaviness in leg/hip, to name a few). However, new insurance and new docs have allowed me to maybe get real answers in light of ever-increasing symptoms.

Without getting into everything, this is where I am and what has led me to ask a question on here: After my PCP did MRI of neck (in April due to significant onset of pain, nerve pain, stiffness---discs herniated, so did 6 weeks of PT and pain/nerve pains gone)and then more recently MRI of brain, he referred me to neurologist for ataxia, muscle spasms and cramps, several episodes of my eyes closing uncontrollably, jaw and throat spasms with choking on liquids and the whole ankle/knee/hip collapsing. Neurologist seemed unimpressed with my presentation and my litany of complaints; I even asked "should I even be here?" as she seemed put out with me. "No, it's fine. But now that you mentioned the eyes and choking, I am going to HAVE to test for Myasthenia Gravis." Well...duh. And, sorry to make you do your job. I asked why that was a problem and she said "MG doesn't present with these cramps you describe." I said well, I present with them. She told me no to MS (I asked), saying my cervical and brain MRI showed no lesions "but we might check out your thoracic area next."

Then we did the exam. Then she says "Well, you have severely brisk reflexes." I was proud of how my leg kicked out so hard, but this made me rethink my pride. She wrote on her clipboard and said "Well, I see Upper Motor Neuron issues. We'll need to do an EMG of the upper extremities to see about your Lower Motor Neurons." She ordered some blood work and I set my appointment for Jan 20 EMG.

I left and reported to the husband "She's testing for MG." Which I guess I figured out already, not that I had it, but that it needed to be ruled out. BUT...and here's my rub...I read yesterday about MG and it does NOT include UMN stuff. I'm trying to figure out what DOES have UMN and LMN stuff and...well...you see why I might have ended up back here?!

Sigh. I know I know...let's see what the EMG says. See...I did it anyway: bothered you for no reason! :)))
 
Yes, unfortunately you do need to be patient. The doctor will need to rule out many things before they can give you this diagnosis. I understand it is very difficult to wait patiently when your health is affected but in this case it is for the best.
 
Gooseberry, thanks so much for taking the time to respond. Honestly, just posting on here has helped already.
I do wish you and yours a peaceful holiday. Thanks again.
 
Wanted to (try to!) update after my EMG today. Obviously I don't have a report yet, but I'll just lay out my "take aways" for now.

Only scheduled to do the EMG on upper limbs. I did ask why before we got started and she said basically that to do all limbs "would wear us out" in one sitting! (Honestly, the NCS and EMG were a piece of cake; only one needle on the side of one hand was extremely painful. I could have done all limbs, but I totally get why she wouldn't want to. It is a long process.)

The NCS was fine both sides.

On my left hand/arm, she noted MILD carpal tunnel. Everything else looked fine (happy dance!)

On the right side, she noted "abnormality" in my forearm (two spots she said this). She talked about a reduction, but I'm not quite sure what exactly she said so honestly I could be wrong about that. Also something with my elbow; she said normally this would have to do with the ulnar nerve (quite common), but also said I don't show the sensory disturbances in my arm or hand. (? I'm lost here, but ok.) ANYWAY, she said with these EMG abnormalities that she didn't feel we had the whole picture or a way to account for my symptoms.

During the test, she noted which nerves were associated with the cervical neck and stated after the test that she had ruled out any involvement from my neck (I had an MRI of my neck after an injury, but she said it really didn't show anything that would account for my symptoms. So, today ruled it out completely.)

Now I'm to have a scan of my thoracic spine then an EMG of my lower extremities. Suffice it to say, yeah...we still have to look around, but I definitely don't think I've "ALS-Flunked" the EMG :)) (happy dance)

So, she just said we have ruled out a lot of stuff with blood work and that we will keep looking until we either find something or just start treating me symptom by symptom. I started back on Zanaflex 3x a day for the spasms/cramps.

I'm posting for the DIHALS-ers who visit looking for...well, whatever it is we look for. For me, it was anything that pointed away from ALS. I've found a whole lot here that has helped me with that. But I guess until all the rule-outs happen, I will probably visit here some more, to be honest.

Also, if anyone is in the same boat as me, or has been, some dialog would be nice, too :)) I feel like the doc is doing a good job...if anyone has anything to add, that would be great. Thanks for reading.
 
First, if the Affordable Care Act helped you get insurance be sure and write your Republican Congress person and Senator.

After reading your Thread of 12/21/14 more tests may be coming your way... MRIs of the spine. This is just a side note (and for others who may read this). If MRIs become part of your future diagnostic journey ask your doctor (encourage) him/her to schedule a vertical (stand up/sit up) MRI. Horizontal MRIs are fast becoming a thing of the past. So much more is being found from vertical MRIs over the old lay flat MRI. But... they are going to push the equipment they have to the last penny.

You'll have to find patience, your neuro mentioned Upper Motor Neuron... as you've probably read, PLS is Neurological observation for a period of 3 to 5 years before the criteria is met for a diagnosis. You'll know more after the next EMG... hopefully.
 
First, if the Affordable Care Act helped you get insurance be sure and write your Republican Congress person and Senator.

What a great idea! YES, I was unable to get insured until the ACA. I will indeed write my peeps. Great suggestion.


After reading your Thread of 12/21/14 more tests may be coming your way... MRIs of the spine. This is just a side note (and for others who may read this). If MRIs become part of your future diagnostic journey ask your doctor (encourage) him/her to schedule a vertical (stand up/sit up) MRI. Horizontal MRIs are fast becoming a thing of the past. So much more is being found from vertical MRIs over the old lay flat MRI. But... they are going to push the equipment they have to the last penny.

I've never heard of vertical MRIs but it does make logical sense in a way. I'll ask around...
I've had the cervical and lumbar MRIs, so next is thoracic.


You'll have to find patience, your neuro mentioned Upper Motor Neuron... as you've probably read, PLS is Neurological observation for a period of 3 to 5 years before the criteria is met for a diagnosis. You'll know more after the next EMG... hopefully.

Thanks so much. It is easier to be patient when you feel like someone has your medical back, and I do feel that way with my internist, and maybe even this neurologist. I am confident at least that they are looking in places that need to be looked at. I go to the internist on Monday to get results from heavy metals and other blood work. I keep hoping all these blood test will produce some "EUREKA! We found it!" moment!
 
My husband had his spine and brain mri's sitting. Much more comfortable and better resolution. Quick as well
 
Well, I sorta feel like a goober. Been responding on others' posts and been told to keep my responses on my on DIHALS thread. Hope I"ve not offended anyone...I truly thought I could converse in the DIHALS forum on others' threads. I am in a "helping profession" so I tend to want to butt in and try to help! OOPS. I do appreciate being messaged so nicely, tho :)
 
MT.,
I feel for your situation and the emotional roller coaster you're riding. In spite of my having tried to bone up on the navigation before joining I still find it difficult or impossible to find certain topics and threads that some grouse at others to read. Perhaps my web-browser interface is less than ideal or maybe I am a dolt. Consider me a fellow goober. In any case, you mention you were messaged nicely. Good. I have seen persnickety posts and they can turn a newbie off. Hopefully you find a treatable source of the upper motor neuron symptoms.
For what it's worth, I can empathise with your journey. I have time now to reflect on my own circuitous route of diagnosis and treatment involving chemotherapy for my red-herring leukaemia. Communicating each test, the results, the interactions with physicians, and everything related to the process with friends and family was just about as tiring as the disease. Keep being your own advocate. Do not let go of wanting to learn about each test, the results and how they fit into the whole picture. You are likely the only one with all the details. Keep notes and list issues to share within appointments... my Neurologist was honest with me and shared that he appreciated this habit as he admits he forgets details. They have an overwhelming task and workload. Do not hesitate to jump ship to a new Neurologist if your communications style is a mismatch.
I see through the "retrospective lenses" that I was naive in my medical system awareness, insurance too. The faster you pick up terminology and an understanding of the clinical culture of diagnosed and rx, the more you're apt to make productive use of your physician's team and time. The goal is to prevent further physical and emotional degeneration—try to keep that in mind through this period of turmoil. Coping strategies start now.
Good juju and much empathy from me, A.
 
Wondering Runner, thanks so much...empathy certainly helps, truly. It's lonely out here!

As you said "The goal is to prevent further physical and emotional degeneration—try to keep that in mind through this period of turmoil. Coping strategies start now." This, as well as your advice about keeping notes, etc., speaks to me so much.

As such, I've decided to do a few things to start my coping strategies now. First, I think I'll stay away from this board. It is a distraction from what is going on physically and emotionally. At this time, I just don't need to read a) posts from people who apparently are fixated on ALS as a diagnosis. These posts (and the answers from senior members) have actually helped me as a means of checking my own sanity; but ultimately, at this time, they just kinda bring me down. Not sure why.

Also, I think my time and energies need to be on managing my symptoms. Whether I get a diagnosis or not, I have real symptoms that require me to adjust even simple activities. That can get exhausting, even on good days. I need to truly rest, adjust to taking muscle relaxers all day, find activities that I can do without awakening the Cramp Dragon. Stuff like that.

And I need to keep an open mind...reading about MND stuff can essentially put up some borders on my symptoms that I do not want. Give me an MND diagnosis, and I'll read til I'm an expert. Until then, I need to become an expert on my body. Without distraction.

Yesterday I went on a trail hike with the hubby. Walking stick in hand, I muddled through great...two stops for cramps, a few awkward balance issues, but ultimately I had a thoroughly enjoyable hike. Paid for it a bit, but came out of it with this: Even if I end up with some funky no-good diagnosis, I have GOT to get a handle on what I can and cannot do. Now. Today.

I'll of course update if/when there is a reason. Internist tomorrow for bloodwork results; MRI of thoracic spine on Thursday. We'll see what's next after that.

Peace, ya'll!
 
Good luck. I think you are very wise. Fixating on ALS as you say is very detrimental to the undiagnosed mentally and physically and hinders their quest for answers. Too many times the question to their physicians seems to be is this ALS or may I have (another) EMG? When the question really should be what is wrong with me and if you don't know yet how do I find out?
I hope answers come your way quickly and do not bring you back here!
 
Just wanted to wish you the best of luck. Sorry, you are having to go through all this. Hope you get some answers soon. Kim
 
Thank you Kim. Thanks all for all the support.

I am only checking back in to report on bloodwork (all negative, from Internist and Neurologist) and thoracic MRI (also negative). I have an appointment scheduled on 2/23 with the neurologist to plot next steps.

I have to say it's a funny world when a negative MRI makes me cringe instead of celebrate. In my heart I was SO hoping that the MRI would be an AH-HA moment for the docs and me. Sigh.

Also started on magnesium (as the doc said "It can't hurt, and some people say it is miraculous."). However, since then, I've had one major spasm that put me down for a day or so and have had to increase my tizanidine for cramps. So, no miracle there :)

Thanks again all. I am letting my body do what it will while I try to care for my mind above all else. I'll post again once there is something clinical from a doctor...I could rant on about my body, but I think I'll pass and spend my time planning my super bowl menu instead!
Peace, ya'll. Peace.
 
Hey ya'll...well, snow (yes SNOW in Louisiana!) made my neuro reschedule, so now I go in on Tuesday the 3rd of March. I have been on the magnesium (my hope for an instant cure!) for over 4 weeks. Not only do I not see an improvement, I am getting worse.

I know ALS is not about cramping (welllll....we'll just leave it at that), but my feet are almost constantly in a state of cramp or major stiffness; my rightt arch has a constant thump thump thump. I have had charley horses on the front of my thigh, the forearm, and around my ribs---spasms in my freakin' stomach! If I stretch my body I set of what could be called charley horses...the horrible, hours-long spasms that affect me for hours if not days. My right ankle gives out completely, and turning to the right sets off balance issues.

When I try to get on the floor to do my stretches, my toes go into spasm and stay that way for a while. This is all within the last few weeks, a daily/hourly ordeal.

I've lost my voice three times in the last few months, with stiffness in my jaw and wayyyyy too many coughing fits and/or choking when drinking or eating. I feel like I'm coming undone, and I also feel I don't fit the ALS picture, or any freakin' picture (well, maybe PLS, from the accounts I've read) and so I am dreading the neuro appointment as I am anticipating a big fat I DUNNO. Sorry...maybe this rant should have been on a blog or something. I'm just finding it hard...on the inside I am SCREAMING "WTH is going on here? Why isn't someone horrified and concerned?! SOMETHING IS WRONG." Outwardly, I am my usual calm and collected self.

I am taking tizanidine 3x a day and STILL cramping. Jeeeeepers.

Sigh. Sorry...I know I risk being a whiney baby on here considering where I am. I just am at the end of my rope (well, for a minute...that's all I will allow).
 
I know you must have wanted to scream when you realized the appointment would have to be moved back! I also understand what you say about wondering why the rest of the world isn't worried. Why isn't it more urgent that you be seen and given and answer! If you are calm outwardly, you are doing well.

I wouldn't say that ALS is never about cramping. My husband's situation was apparently unusual, but he suffered horrible cramping before noticing weakness. Perhaps that is because he was very strong to begin with and was able to lose some muscle without realizing it.

What confuses me is that I've read over and over that an EMG in any part of the body will show ALS in any other part. If that's the case, why weren't you cleared from ALS with the first EMG? By the way, has this all been with the same neuro--the one who seemed put out about testing for MG? Are you comfortable with him?
 
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