Awaiting a Diagnosis

[Aloha]

I'm new at this... PLS as well as the Forum. As I wait for some formal declaration from my neurologist (next appt set for late Sept), I've been reading everything I can find online that seems to fit my set of symptoms. Your forum seems to address pretty much all of my issues, so here I am. My story is:

I went to see my GP in March of this year because I was having odd "gripping" spasms around my mid section, followed by very weak arms and legs, tingling and electrical sensations throughout all limbs, and I was dropping things periodically. The symptoms seemed to come and go, though something was always there. She sent me for EMG, NVC, MRI (brain, spine) and blood work. Her suspicion was MS. Everything came back negative. So, she sent me to the neurology department at Stanford and they reran all the tests, plus added in a spinal tap and some exotic blood tests for good measure. Again, everything came back negative.

In the meantime, my walking has become difficult (feels like I have to think about making my legs move), I have leg spasticity that is at times incredibly painful, spasms, cramping, general weakness and I can't stand for more than 5 minutes or so at a time. My fingers feel fat and uncoordinated and I have a great deal of what I'm calling typing dyslexia (I can type, but I keep mixing up the letters and have to go back to fix it). The tingling and electrical sensations continue on their own pattern - some days stronger than others, and randomly between legs, arms, torso or head. I cry at ridiculous things (like finding too many choices of breakfast cereal in the store or receiving a lower electric bill than anticipated). I'm able to swallow and speak, but I have a constant need to clear my throat, with an unproductive cough and hoarseness by the end of most days. Oh, and did I mention the fatigue? Some days are better than others, but each day brings some combination of these symptoms - it's just a matter of how severe. I've also realized that I've had some variation of these symptoms for several years. But, I assumed that a certain amount of "body chaos" was part of middle age and I didn't bother to go to the doctor about them until they got more serious.

Sorry for the long initial ramble, but thought I'd offer up my PLS Creds as a starting point.

 

[old dog]

I said, at some time in the past on this forum, these are some of the things I would look for if I was a neurologist--cramps in unusual areas such as rib cage, slurred speech and/or difficulty swallowing, difficulty walking, (having to concentrate, as you mention, or one leg feeling like a peg leg) deformed feet, (hammer or mallet toes) inability to control emotions, (usually laughing or crying) fatigue, and general loss of flexibility. However, it appears many things can cause these symptoms.

Good luck to you. I hope your symptoms don't become disabling whatever the cause.

 

[Aloha]

Thanks Old Dog for the comment. The progression on this thing is what is most frightening - once I started paying attention, things seem to be deteriorating monthly.

Has anyone else experienced what I'm calling surges and plateaus? I have a week or so of a very strong symptom, followed by a week or so where it seems to back off a bit. Is it really less intense or am I learning to cope with it better? Then, just when I start thinking that this is something I can handle OK and maybe it isn't as bad as I think, then it either returns or a different symptom becomes super strong. Have had this with the spasticity in my legs, with weakness in my arms and legs, or the limb tingling. Is this a "normal" pattern?

 

[Tokahfang]

Hi, Aloha

Welcome to the board.

Sensations (tingling, electrical feelings) aren't part of any MND. Motor neuron diseases are just that - they damage the nerves that make motoring about happen. It is quite possible you have a upper motor neuron affecting problem, but it may not be an MND necessarily. (Gunshot wounds to the spine cause motor neuron damage, too!) The hard truth is that UMN diseases take a very long time to diagnose. You can't do much with tests to see exactly what the UMN's are doing, so instead the docs have to look for a constellation of symptoms and how they develop over time. Then they have to rule out anything else that could be causing those symptoms.

I don't know you yet, and I don't have a lot of details here, but I want to suggest to you that on top of whatever spastiity and mobility difficulties you are having, you sound like you have a layer of functional neuro symptoms on top of it. Particularly when people are undiagnosed for a long time but under a legitimately difficult condition, our brains tend to want to fill things in for us. Functional neuro symptoms are like the software problems of the computer world - they aren't something that's broken in your computer, just something that is set wrong or doesn't work quite like it is supposed to. Sometimes they come as a whole condition of their own (fibromyalgia, for instance), sometimes as scattered symptoms. Sometimes they are just something here or there - a feeling to something that shouldn't have a feeling, for instance.

To make it personal, after the onset of umn symptoms, I developed additionally something called conversion disorder. At the time (this was the mid to late 90's), the symptoms of conversion disorder were actually much, much worse than the the umn damage I had so far. If I could go back in time and tell myself one thing, it would be: "hey, you have this long term nerve damaging thing, but it's not what is ruining your life right now, and you're going to earn to manage that fine! This is how you deal with the functional stuff."

So if I could encourage you of one thing, since you tested clean for MS, don't try and force every symptom you have into one diagnosis. There may be multiple things going on, and UMN problems are a long haul situation to live with and diagnose. In the end, if it isn't treatable, it does't matter what your problems end up called so much as how you live with them. It isn't uncommon for people with any neurological problem to have a few functional symptoms, the problem comes in when they try to lump it into whatever they got diagnosed with.

In the meantime, we are full of practical advice for clumsy fingers, what to do when you can't stand, and what to do when you can't read a book through the tears you shouldn't even have. (There are drugs for that emotional liability stuff, if it gets too bad, for instance.)

 

[Aloha]

Tokafang, I think you may be my new best friend! You hit the nail on the head. I had been ignoring my symptoms for several years assuming they were just part of getting to be middle aged, so once the doctors agreed that there is definitely something wrong, I WANT to fit every oddball issue into a nice, neat, tidy package. Whatever this is, it does not seem to respond to being fit into that particular box.

I appreciate your big picture viewpoint and will fight my control-freak nature to try to "put a name" on this too soon. The uncertainty is what is often more frustrating than the symptoms. But, we all live uncertain lives... it's just that most of the time we don't realize it.

Thanks.