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Chelle

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To introduce myself, I am a 30 year old female, happily married with no kids and work full time in a moderate-level stress job for about 50 hours a week. I began reading these forums a bit about two weeks ago after I picked up my medical records from my neurologist and found that the community seems generally friendly, compassionate and knowledgeable.

Up until about two weeks ago, I hadn’t even heard of MND or ALS or any of the other subgroups, and had only heard Lou Gehrig’s disease mentioned, but never looked it up. The reason I am here is that I am simply seeking the experience of the community by respectfully requesting some insight into what I have been going through.

For some hereditary history, neurological issues run in my family on my father’s side with my grandmother dying of pulmonary failure after about a 12 year battle of progressive MS. She started off with a cane, then a walker, then a wheelchair as a paraplegic in the legs, and finally house ridden when she had no use of her legs and very little use of her arms. I also have an aunt on my father’s side that complains of what she describes as MS-like issues, but does not currently have a diagnosis after seeing numerous neurological specialists and currently manages her symptoms, which are minimal, through diet.

I tried typing out my history in paragraph form and it turned out to be a very hard read, so I will list out my issues in a sort of timeline, as impersonal as that might be.

October 2010
Extreme mood swings began. I had always been a positive, happy, non-emotional person up until this point and to have mood swings was very abnormal for me. Alcohol seemed to make the mood swings much worse in the negative way. I chalked it up to bodily female hormone changes. I also noticed some kind of visual changes and kind of felt like I had some void blocking the peripheral vision in my left eye.

November 2010
I noticed numbness and tingling in my lower left leg, foot and toes.

December 2010
Upon hearing of his stepmother recently being diagnosed with MS and taking into account my family history, my husband convinced me to see my general practitioner.

Early January 2011
I saw my general practitioner immediately after the New Year’s holiday. She prescribed me Prozac for the mood swings and ordered general blood tests (blood count, vitamin B-12, thyroid, etc.)

Late January 2011
Involuntary twitching/jerking and coordination issues began. I stopped taking the Prozac and I felt I had leveled out. I saw my general practitioner again and all blood tests were negative. She ordered a brain MRI, an eye exam, and an NCV/EMG and referred me to a neurologist.

February 2011
I had the NCV/EMG and it was normal. I took the eye exam, which showed a “superior arcuate defect” in my left eye. (I will mention that my vision has remained the same since the changes I felt in October.) I had the brain MRI and the results were normal.

March 2011
I had my first appointment with my neurologist who ordered another a cervical MRI, which was normal. After receiving the results of the cervical MRI, his office performed the following:

Brainstem Auditory Evoked Response: Normal.
Visual Evoked Response: Normal.
Somatosensory Evoked Reponses: The results state, “Abnormal median somatosensory evoked response showing complete absence of any obtainable thalamocortical waves (N19-P22) bilaterally. The Erb’s point and subcortical waves are all intact and latencies were within normal limits. Such a result would argue strongly for a significant central sensory conduction block somewhere between the brainstem and thalamus bilaterally.” My neurologist told me that in MS, results like this would be accompanied by a MRI that would be lit up like a Christmas tree. He noted that the cause of this is, “mysterious.”

NCV/EMG: The results state: “Basically appears to have normal NVC’s throughout. However, EMG’s especially on the left lower extremity very abnormal showing findings consistent with both acute and chronic denervation and possible an L5 distribution through the paraspinals are within normal limits and also have some findings in the upper left extremity.” He orders a lumbar MRI and seven vials worth of blood work.

April 2011
I start getting small muscle movements under my skin all the time. All blood work normal and the MRI shows a “central annular tear at L4-5 with a 3mm posterolateral disc protrusion contacting the exiting left L5 nerve root.” My neurologist asks if my back hurts and has me do a bunch of bending/flexibility with my back. I told him that I’ve had that issue for eight or more years. I had gone through physical therapy for it and I have no pain at all from it. He orders physical therapy for my back.

April 2011 to May 2011
I go through physical therapy for my back and experienced no back pain at all in the process. I begin to get numbness, weird sensations in my right foot/lower leg and notice some weakness in my left hand.

Late May 2011
My neurologist gets the results of my physical therapy and I let him know about the problems now in my right foot/lower leg and the weakness in my left hand. He did some poking around my hand and noted, “absent left to finger flexors” and “more prominent atrophy of the intrinsic muscles of her left hand. Diffuse fasciculations now clearly apparent.” He does an NCV on my upper left extremities, which showed, “no evidence of any demyelination, prolongation of F’s, etc.” He orders a blood test for CPK and Aldolase (I don’t know what that is) and a blood test for autoimmune sensorimotor neuropathies, which could take up to 6 weeks to complete.

Early June 2011 to Late June 2011
Pain begins. It feels like cramping of muscles, but I couldn’t figure out if they were actually cramping or not. The cramping would quickly come and go on different muscles. I saw my neurologist and the CPK and Aldolase results are negative and the autoimmune sensorimotor neuropathies test was also negative. He orders a West Nile blood test and a lumbar puncture. Both the West Nile test and lumbar puncture are negative.

Early July 2011 to Late July 2011
Legs are beginning to get weak. I see the neurologist and he notes atrophy in both quads. He puts me on Lamictal and orders a blood test for VGKC antibodies.

August 2011
I begin choking on liquids enough to be noticeable. I see my neurologist and the VGKC antibody test negative. He takes me off Lamictal and orders 1g of Solu-Medrol a week. I let him know that I have begun to choke on liquids a bit and he asks me to stick out my tongue. I stick it out and he says that he sees it flicking and orders a swallowing evaluation. I stick out my tongue in a mirror to see what he’s taking about and it looks like some pulsating worm. On a side note: Ew.

September 2011
I go in for a swallowing evaluation and the result is pharyngeal dysphasia with risk of aspiration. The cramp-like pain is beginning to get worse and making me irritable. I’m noticing weakness in my right hand. I see my neurologist and he stops the Solu-Medrol as it didn’t produce any results. He puts me on Lyrica for the pain. He does an NCV/EMG on my right arm, which was normal. He orders swallow physical therapy.

Late September 2011 to Mid-October 2011
Both hands have gotten dehydrated mostly on the fingers. I begin swallow therapy. My dose of Lyrica for the camping-like pain is settled at 150mg, four times a day. I see the neurologist and he runs a second test for Sjogren’s (the first was back when they took the 7 vials of blood.)

Late October 2011
Sjogren’s test is negative. My handwriting is beginning to get worse and I can’t tell if my hand is weak or it just keeps twitching. I see my neurologist and he notes that the lower extremity weakness progressing and “Marked bilateral quad atrophy now.” He orders a follow up swallow evaluation and says he’s going to refer me to the medical school (University of Texas Southwest) for a second opinion. I had figured he wanted a second opinion as he just couldn’t figure out what’s going on. I will elaborate more on this entry in the last Mid December entry.

November 2011
Since I feel like I have nothing but time at this point, as an experiment to see how bad my pain is without Lyrica, I begin to wean myself off. I was on 150mg, four times a day and I weaned myself off over about two weeks. When I got to the point where I was trying to go from 150mg twice a day to 150mg once a day, the pain got much worse and I began to get some crazy anxiety. I figured I was having some sort of physical withdrawals I went back up to 150mg, four times a day until I see my neurologist again to help wean me down.

Late November 2011
I see my neurologist, but the waiting list is long for the swallow evaluation and I haven’t had it yet. I let him know about my experiment to wean myself off Lyrica to see how bad the pain is, he said he would help me taper off over a couple of months and put me on 100mg, four times a day. He notes that the nervousness that I got when trying to wean myself off was “disturbing,” although I don’t’ know why.

Early December 2011
After going down to 100mg four times a day for about a week and a half the cramp-like pain seemed to be worse and it seemed that I was twitching and jerking much more. I called the neurologist and said I was done with my experiment and would like to go back up to 150mg, four times a day and he said that was fine.

Mid December 2011
I go in for the follow up swallowing evaluation and the result is still pharyngeal dysphasia, but the physical therapist says it has improved a bit with therapy. The medical school requires that I bring all history and test results for the past year to my appointment, so I pick up my records from my neurologist. I sift through them and see that in late October, my neurologist says that, “At this point, see no alternative but to diagnose motor neuron disease. Hopefully just spinal muscular atrophy. Will refer on the medical school for confirmatory opinion.” I look up motor neuron disease online and it doesn’t seem like a good deal at all.

Late December 2011
I use stairs quite a bit as we have a two story houses and it seems my legs are getting a bit more week. I notice that I can now visually see atrophy on the inside of my lower left leg. I have also recently noticed that the right neck muscle on my shoulders (trapezius superior portion, if I have that right) is substantially smaller than my left. I have not had an appointment with my neurologist since I noticed these.

Below are my current issues in a nutshell that have begun and steadily gotten worse since the beginning of the timeline although some days are better (or worse) than others:

Weakness and atrophy in all limbs. I am also just generally weak and tired. I used to have so much energy and now I feel completely zapped all the time. If I need to do anything around the house, I have to do it on the weekends before noon or I will be just too tired.

Dysphasia: I still choke on liquids and I noticed that I have problems with food trying to be swallowed before I’m ready, so I end up prematurely swallowing portions of stuff before I’m done chewing.

Involuntary twitching\jerking of all my limbs, torso, neck, lips, and right eyelid.

Fasciculations all over, including tongue

Cramp-like pain.

Coordination Issues: I am always knocking things over, dropping things, etc. I haven’t fallen yet, but had a few close calls that were severely clumsy and comical, I bet, to watch.

*phew*

I’m sorry for the long read, but I feel it was necessary. My family asks what I think and I always reply with something like, “I have no idea; I didn’t go to all that school for this stuff!” I feel like I have my age going for me, my family history going against me, but that’s where my knowledge and gut feelings stop. I guess you could say I’m just neutral until I hear from the experts. I will not speculate here as to why my neurologist didn’t tell me what diagnosis he was getting a second opinion on, but I can think of several reasons.

While I leave the diagnosis to the experts, I would however, love any information that can be provided by this seemingly experienced community, and if anything, I feel that it was good to type all this out so that I have a sort of record in semi-narrative form if I ever need to refer back to it.

You have my sincere thanks.
 

trfogey

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Glad you were able to get that out of your system. The only advice that I have for you is to wait it out until the evaluation and second opinion from the medical school. Your current neuro seems to be doing a good and thorough job, despite your snide cracks about him in this post, but sometimes neurological issues take several months to diagnose.

Not the advice you wanted to hear, I'm sure, but it is advice you need to hear.
 

Ms. Pie

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I hope you figure out what it is and that it's something that can be fixed. I feel safe in saying that it's not ALS since your symptoms don't present anything like ALS. Be patient with your Neuro. These things take time to diagnosis. Best of luck to you and I wish you a happy new year.
 

Chelle

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trfogey: Waiting on the medical school's expertise is good advice and it is the advice I had already given myself. I looked to this community for purely informational purposes so that I can hopefully learn what more to expect while going through this process. Also, any snide cracks towards my neurologist were entirely unintentional and just miscommunication on my part. I feel like my neurologist is doing a great job, which is why I have chosen to stick with him. I haven't posted in a forum in years and I have a very dry personality and sense of humor, so I am often taken the wrong way (especially online,) so if for some reason you need me to clear up any unintentional snide remarks, please let me know. I hate to come across as snide towards him.

Ms. Pie: I am glad to hear that my symptoms aren't at all presenting like ALS. When reading up on motor neuron diseases, ALS seemed to have the most information available, but didn't really sound like what I was going through. Either I've looked in all the wrong places or information on other types of motor neuron disease out there is pretty limited.

Thank you both for the replies and have a great holiday!
 

Chelle

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I also just realized that I think I misinterpreted what the forum is and that ALS/MND are used interchangeably when my current suspected condition, motor neuron disease, is used to specify a range of diseases in a general sense. I'm new at this and I think the information I've found isn't very clear on that. I'm sorry for bothering everyone with all this if that's the case.
 

Chelle

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Also, trfogey and Ms. Pie: Thanks for your replies. I had posted in response to your replies, but it seems that it is still under review by moderators as I didn't use the Post Quick Reply option. I hope that it will appear soon.
 

TedH5

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Chelle, you certainly have a lot going on. Obviously a lot of possibilities are on the table. While I realize not knowing is certainly frustrating but in your position the best thing you can do is see what the Dr's tell you. Good luck and please let us know how it goes.
 

Chelle

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TedH5: Thanks so much for your understanding. I will most certainly post the outcome here if individuals are interested.

After a bit of lurking on this forum, I realized that I have created a thread where 95% of the thread-starters seem to be off their rockers. I now feel a bit sheepish for posting my issues here where this specific forum seems to be a location to easily direct all the lunatics on these forums towards. Unfortunately, I think this means that I may, in fact, be one of them. Either way, I think I may have chosen the correct forum for my issues after all, as after my lurking, I realized I was looking in the right general direction, but I cannot find a "Does This Sound Like a MND/Not Specifically ALS" type forum.

In the meantime, I hope the community doesn't mind a bit of lurking as all of this is very new to me and I would like to have a bit of basic knowledge of what will be discussed before going into my appointment with UTSW in January.

Again, my thanks.
 

Alyoop

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Chelle, you are not one of the lunatics, thats clear. You have neurological stuff going on that is way more than any of us could even begin to understand. Hope you get an answer soon.
Best wishes
 

HelenL

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Chelle, lurk away, that's what I did for nearly 9 months before I joined... and I had already been diagnosed, but I felt it was much too quickly.

It's fine to post, just not everything that is wrong with someone should be attributed to one disease/condition, many are totally unrelated. It actually is funny sometimes when people post everything that's happened to them in the last 20 years of living, as if it all relates... but I did a timeline myself when I went to the ALS neuro (after being diagnosed) to convince him that I didn't have it. Not very successfully.

So welcome to the forum, and come join us on the "tea" thread if you feel like talking about anything and everything.

Helen
 

notme

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Hi

Dehydration is caused by lack od adequate liquids. I've never heard of dehydration of just hands. Did that come from a doctor?

Remember, there are something like 40 diseases under the MND umbrella. The clear EMG should rule out Als which is a good thi g.

Lyrica can be quite sedating and may account for some of the weak feeling. I'm glad it's helping with your pain. It's never a good idea to try and change dosages on your own of any med. let the docs handle that kind of thing.

As already said, there can be more than one thing going on. It was actually good of your neuro not to mention MND to you...no reason to make you worry needlessly. Wait on the second opinion and good luck to you. One of the worst things you can do at this point is to research als on your own. You will only scare yourself.

You can expect the ALS specialist to repeat the EMG. Most of them like to see the results for themselves.
 

Chelle

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Alyoop: Thanks so much for your understanding. Understanding is what made me want to share my story in the first place with this community!

HelenL: That's kind of what I am hoping for with things like the initial abnormal vision test and two of three EMGs being normal. Thanks so much for the invite, that's very nice!

notme: The dehydration (some dryness with pruned fingers, mostly on the tips) was first noticed by me, then acknowledged by my neurologist, which is why he ordered the second test for Sjogren's. It hasn't spread and if I have dehydration anywhere else, I haven't noticed. In the past year, there have been so many things that have been at least considered such as MS, spinocerebellar degeneration, BFS, autoimmune neuropathies, etc., that for now, MND just goes into the the bucket of possibilities that I feel that I should at least be a bit knowledgeable on since they have been mentioned. Maybe a little more so now with MND as it seems he has come to that conclusion and is now looking for a second opinion. Also, you are correct in the UTSW doctor wanting an EMG, as I am scheduled for an NVC/EMG immediately after the clinical exam. I learned that doctors like to do the EMGs themselves after my neurologist found abnormal readings in the same location that the previous EMG tech found normal readings in and made a comment about the questionable quality of the traveling EMG tech teams, or something along those lines.

Thank you all for all of your help and support. I appreciate it very much, but as thankful as I am for all the help, I'm hoping my stay here is but a temporary one!
 

hjlindley

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We all hope so too!
 

Chelle

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While I am reluctant to bounce off the walls here out of respect for everyone here living with an MND and especially who take time out of their lives to help us relatively lost folks, I would like to update my thread and state that I walked away from the medical school this morning with a clean EMG. :) While something potentially very nasty has been taken off the table, it would seem I still have a journey ahead of me with trying to find a cause of what they call “hereditary or idiopathic neuropathy.”

I sincerely thank you all very much from the bottom of my heart.
 

momap53

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Chelle, that's excellent news! Thanks for sharing and good luck on your journey.
 
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