Confused Regarding my Symptoms

[jake123]

I've been browsing the forum daily for a few weeks in an effort to educate myself with ALS. I'll try to make this as short as possible.

I've read the sticky, probably a dozen times, but I'm still not sure.

The symptoms I'm concerned about started just a couple months ago. All of a sudden I had a slight tremor in both hands while in use only, at rest they feel normal. While putting a piece of paper in a file cabinet the paper would shake, while using a fork to pass food to my kids it would shake, while putting tooth paste on my tooth brush they would shake, etc. Again, this happens in both hands, not just one. I've had some brain fog over the past year or two - I say the wrong word, just not as sharp as I was in the past.

My GP referred me to a neurologist. I first described the symptoms to my neurologist as a slight tremor, but now I would describe it as feeling really uncoordinated using both my hands with a slight tremor when in action. I understand from the sticky that it makes a difference if my hands still work. I feel very uncoordinated and struggle with simple tasks, but I can still perform those tasks. I guess what confuses me is there must be a middle ground between when someone's hands work normal as they should, and when people are unable to use their hand at all. Wouldn't there be some sort of coordination or weakness between when a person's hand works normally and doesn't work at all?

My issues have definitely not improved, they've gotten a bit worse over the past month or so. I'm now having problems typing, specifically with my left middle finger. It doesn't move like the other fingers, it gets stiff, typing is getting a little difficult due to this issue. Again, my finger still works, just not correctly.

A couple other very minor issues are some fatigue in my legs, they both get tired very easy. I've gotten really lightheaded a few times in the past week. Every time I got dizzy happened to be on a day when I exercised. I'm holding off on exercising for the next few days to see if the issue returns.

My neurologist sent me for an MRI of the brain and spine - the brain MRI was not normal, the spine was normal. I had perventricular white matter lesions in my brain, not normal for a 39 year old. My neurologist stated it was consistent with MS so he sent me for a spinal tap. My oligoclonal bands from the spinal tap came back negative so he said I likely do not have MS. My blood work was all normal except for a very elevated ANA SS-A auto-antibodies. Due to the elevated ANA I'm now waiting to see a rheumatologist, and then my neurologist again.

In my original consultation with my neurologist I passed all of the tests he preformed during the physical examination. After our discussion he threw out a few conditions, MS, essential tremor, Parkinson's, ALS, lymes, lupus, etc. Due to the tests I've had since then, he confirmed I do not have MS, lymes disease or Lupus. I was ignorant at the time of our original consultation and had no knowledge of any of these conditions so I didn't ask the questions I wish I had when I had the chance.

I've now had some time to research the conditions he mentioned, which is why I'm here. I have to wait at least 4 more weeks before I see him again.

I appreciate anyone that takes the time to respond with their thoughts.

 

[lgelb]

Jake,

Everything you've described points away from ALS and toward something more treatable, possibly Sjogren's, an SLE variant or another rheumatologic disorder. A neurologic origin is still possible as well. A rheumie is definitely a good next step.

Best,
Laurie

 

[jake123]

Thank you for the response, Laurie.

You are correct, my ANA SS-A results being elevated points toward Sjoogrens. The doctor stated normal range is 0-99, mine was 204. However I do not have any of the symptoms usually associated with Sjogrens (autoimmune disease of salivary and tear glands). The vast majority of patients with Sjogrens experience dry eyes, dry mouth, dry skin, dry nose - I have none of these symptoms. Which is why I'm investigating other possibilities.

Regarding your comment about having an autoimmune issue. I was diagnosed with Solar Urticaria 3 years ago. It's an extremely rare disorder, basically if my skin is not hardened (has been exposed to the sun/UV rays on a regular basis) I get terrible hives and extreme itching within 60 seconds of sun exposure. Once I go back inside my symptoms go away within several minutes. My neurologist didn't seem to think this was related in any way to my current issues. I explained it was an autoimmune issue, he thought it was of no importance.

I'll list all my abnormal symptoms, regardless of whether I think they are associated with my current situation.

First off, 5.5 years ago my wife gave birth to our first children, twins. Since day one I've had a major role in the daily care of the twins. My wife has a demanding job. My life immediately because stressful. Having children isn't a symptom of course, but I always assumed it created my first symptom.

5 years ago - Tingling Tongue/Mouth. It happens daily for short periods of time throughout the day, and has been consistent for the past 5 years. In fact, my tongue is tingling as I type. (I always associated this with possibly having anxiety after my children were born, but now that I've had these new issues I'm not sure)

3 years ago - Diagnosed with Solar Urticaria (rare autoimmune disorder)

2 years ago - Brain fog and cognitive issues. Has become worse over the past 6-9 months. I use the wrong words, if my kids are eating a sucker I'll call it a popsicle, etc... Just a general feeling of not being as sharp

2-3 months ago - Both hands started feeling uncoordinated and tremor slightly while performing tasks. This symptom led me to make an appointment with my GP, who ended up referring me to a Neurologist.

2 months ago - Neurologist appointment. He stated I "passed" the physical examination, but sent me for an MRI of brain due to the symptoms I described.

2 months ago - MRI of brain showed periventricular white matter lesions on my brain. Dr's office stated these are consistent with MS patients, and are not normal in a 39 year old. They sent me back for another MRI of the brain and an MRI of the spine, both with contrast this time. Nothing new showed up with contrast, spine looked fine. Neurologist scheduled a spinal tap.

1.5 months ago - Spinal tap. Everything came back normal except my ANA profile, the SS-A autoantibodies was very elevated. My oligoclonal bands came back normal, so the Dr said I do not have MS, which seemed to be their thought at the time. Neurologist referred me to a rheumatologist. Have to wait another 3-4 weeks for the appointment.

3 weeks ago - Both legs feel a bit fatigued at times during the day, not constantly fatigued.

1 week ago - Dizzy a few times this past week. It could be something as simple as allergies, but it's certainly not a typical issue I have.

4 days ago ago - A finger or two on my left hand do not function properly when typing. I would describe it as feeling very stiff when typing. When not typing I can move the finger without issue.


What brings me back to ALS (besides the fact that the Dr mentioned it along with a host of other disorders during our original consultation) is the feeling I have in my hands. I went from having completely normal function a few months ago to having strange coordination issues and slight tremor when in action. This happens in both hands.

The aspect of ALS that confuses me is what the sticky states - if you're having trouble performing easy tasks but can still perform the task you do NOT have ALS. As long as your limb or muscles functions you do not have ALS. Is there a middle ground when the nerve cells are being damaged, before you lose full function of the limb? I assume ALS patients notice an issue before they lose full function in a limb or limbs.

For anyone that took the time to read this, thank you.

 

[WendyWooG]

Hi
To clear up the function issue, the muscles stop receiving signal from the brain so they stop working. Movement isn't controlled by just one muscle so when a muscle stop working we naturally change the way we do things to adapt sometimes without noticing. We wouldn't lose total function in a limb all at once we would lose the ability to make a particular movement. It sneaks up on you, which is why quite often we start falling over. I started with foot drop, my friends asked me why I was limping I didn't realised I was, it wasn't until I took a ballet class and realised I couldn't go on tiptoe that I took notice and went to the doctor. I didn't lose my whole leg or foot at once just a creepy sneaky bit at a time no pain no feeling odd just a growing list of things I couldn't do.

On the autoimmune side sometimes the symptoms are hard to pin down individually, and don't always perfectly fit. I was diagnosed with lupus/sle and fibromyalgia then sjogrens and now they just lump it all under a banner of undifferentiated connective tissue disease. it all overlaps quite a bit. With those conditions I get joint pain extreme fatigue heat and sun allergy hives pleuritic inflammation brain fog. It takes a while but is controllable and manageable with the right doctors medication and lifestyle adjustments.

I hope that your rheumie can sort things out for you

Wendy

 

[KarenNWendyn]

Here's where I might actually be helpful as a retired rheumatologist (but please don't let this substitute for your seeing a rheumatologist for a hands-on evaluation). Wendy is absolutely correct that all the connective tissue diseases (e.g. Sjogren's, lupus, rheumatoid arthritis, vasculitis) are capable of overlapping with one another so the diagnoses are not always distinct . Sjögren's syndrome, lupus, and systemic vasculitis can all be associated with some central nervous system changes including MRI findings of white matter lesions on the brain. However the presence of these lesions is not always clinically significant even be seen in a symptomatic individuals who have these connective tissue disorders. Your neurological exam is what is most important when it comes to interpreting the MRI findings . If your Neurologist and rheumatologist feel that there are definite neurologic signs that correspond to the MRI findings then treatment with immunosuppressive medications may be beneficial . Hope this helps. Good luck.
Karen

 

[KarenNWendyn]

Oops, typo. I meant to say that white matter lesions on MRI can sometimes be seen in completely asymptomatic individuals with connective tissue diseases .