What could I have? How should I proceed?

[Lotjo]

I would appreciate any of you kind knowledgeable folks giving me your thoughts & opinions on my situation. I'm a 39 yr. old male. My initial symptoms started in Jan/Feb 2010: sore, very stiff left calf muscle with twitching. Worsened significantly (couldn't hardly walk getting out of bed) and finally went to GP in April and doc ruled out basic stuff like plantar fascitis, etc. & ordered me to stop taking Lipitor, take CoQ10, which didn't have any affect. Clean bloodwork (CPK levels normal, thyroid normal, B12, Magnesium, etc.)

I had researched symptoms online and got very anxious about MNDs. Started feeling sad, depressed & anxious, worried about worst case scenarios (what about my family, my child). Started getting counseling & working on cognitive therapy. My head got clearer but my symptoms persisted and progressed.

Month later with symptoms starting in my right leg along with intense periods of fatigue and perceived all over body weakness I gave up on the GP & went to a neurologist who did a full neuro exam and EMG & NC test on my left leg. Clean results (nothing on EMG, no Babinski sign, no clinical weakness, etc). Ordered extensive blood tests which all came back normal. He told me not to worry about stuff like ALS/MND. Prescribed Klonopin for muscle relaxation/anxiety relief. Symptoms persisted thru to my follow-up 6 weeks later. Normal neuro exam so he didn't bother w/ another EMG. Thought the problem was muscular and referred me to and orthopedic doc who wasn't sure but suspected "entrapped nerves" somewhere in the calf muscles caused by stiffness but he wasn't sure what was causing the stiffness. Prescribed Neurontin in lieu of Klonopin and an intense stretching regimen. Neurontin didn't do much but alleviated some of the calf pain. I've stayed on that. Stretching helps for about 30 minutes maybe then the stiffness always comes back. Symptoms persisted and then noticed tingling in my hands at night.

Started getting extremely nervous and anxious and went back to the neuro who ordered a head & cervical spine MRI (normal) - no MS, Myesthenia gravis test (negative). August comes and symptoms are worse - (no more tingling sensations though - most likely nerves/anxiety): more stiffness in calf muscles, now worse in right leg than the left. Periods of intense fatigue, tired muscles, everything feels heavier. I can do everything I could before - just slower and not as much endurance and very tired afterward, wear out quickly. No "cramps." Poor sleeping - wake up a lot at night. Lost 15 pounds & I wasn't overweight. My voice gets weak and tired toward end of the day. No slurring that anyone has noticed. Just difficulty getting a word or two out every once in awhile. My swallowing doesn't feel right. Left side of my throat/neck feels strange. Full chest feeling after drinking liquids. No problem getting liquids or solids down but aftewards I cough a lot. Went back to neuro who referred me to an ENT after another normal neuro exam. Didn't feel it necessary to do another EMG. Recommended I pursue a 2nd opinion with another neuro if I was still concerned after ENT diagnosis/treatment.

Went to ENT who suspected reflux & possible sinus infection. Scoped me and cleared me of tumors, polyps, etc. Round of AB's & 3 weeks of Prilosec later, no improvement. Now I notice my soft palate sags - sometimes it feels like I'm swallowing my uvula. It actually appears to deviate slightly to my left - I'm not sure if this is new or not - it looks odd to me. My voice is often hoarse. Cough all the time. Could I be aspirating liquids? More upper body symptoms than before. Tight upper back muscles. Over the past week I've experienced my right arm jerk across my body while on my back in bed nearly asleep (one per night, 3 different times). Feel overall like I worked out a lot the day before but I didn't. Now my hands feel tight and awkward sometimes. Oddly, now my handwriting actually looks worse. I have to really concentrate to write neatly.

Nothing has really gone away - just progressed since Jan/Feb. 2010. I'm almost completely convinced I have some sort of MND. Does this sound like ALS or some other MND to those of you with experience? Parkinsons? I'm emotionally and physically exhausted. Where should I go from here? Back to ENT? Find another neuro? Without counseling, prayer and the grace of God, I don't know where I would be at this point. God bless you all.

 

[joelc]

I don' know what you have but it is not ALS. An EMG would have revealed it but was clean. I hope some doctor can find out what is happening. Good Luck!

 

[Lotjo]

Thanks Joel. I was just skeptical of the EMG since it was only performed on one leg. I'm no doctor though. God bless you brother.

 

[jspec]

Hello, I am sorry you are having so many problems. I can sympathize with you. I'd strongly recommend going somewhere like the Mayo or Cleveland Clinic. I think it is a good way to alleviate the concerns about the testing you've had and the go-forward plan of action.

 

[Zaphoon]

Lotjo,

Have you had a spinal tap to test your spinal fluid?

 

[Lotjo]

No Zaphoon, why do you ask? With a clear MRI the neuro felt no need to go further down that path. What could that test provide?

 

[Alyoop]

The more anxious people get about possible ALS, the more symptoms of it they seem to get. This is a very common feature in many threads. Anxiety can cause a huge amount of symptoms. I am not saying you have nothing wrong, but the more we worry about specific things, especially Breathing and swallowing, the more they seem to be affected.

The jerking as you went of to sleep is a very good example. It is common and normal to have myoclonic jerks just at the point when you go off to sleep. This is a very normal phenonenom. They are especially intense when we are anxious, which is why you felt then recently.

Just make sure that you have regular follow ups with your neurologist so that he can monitor any changes in your signs (Clinical examination). If it is something neurological then he will pick that up on examination. Some signs can take a while to catch up with symtpoms, so make sure that you have the follow upsmgenerally 3 -6 monthly as your Dr wants.

Meanwhile dont ruin your life feeling scared everyday. The days are just to fantastic for that.

Will be thinking of you. Now take a deep breath and smile.
Bless you Aly

 

[rose]

Honestly, a lot of what you describe does sound like added symptoms brought on by the Anxiety Monster.

That said, you should follow up with your ENT if you feel like you're having problems with swallowing. It is very important to be able to eat and drink safely.

Your ENT can:
#1 observe if your soft palate really is too low, and if there has been a change since you last were seen, and, importantly...

#2, your ENT can order a modified barium swallow test. This is quite different than the standard swallow test usually conducted to find problems with reflux, problems with the esophagus, etc. The test will have to be done at a major medical center/teaching hospital. you will not be able to have it done at one of those mri/ct/x-ray centers. It is performed under the direction of a speech language pathologist and the radiologist. They will both be in the room with you, and it will give very detailed information as to what is happening when you swallow.

Depending on the size practice the ENT you saw is in, perhaps there is a specialist within that practice who specializes in the voice (a laryngologist) You might want to ask about that.

I would not try to steer your doctor into being sent back to the neurology department until the reasons you describe having to do with swallow and voice changes have been found (unless the ENT thinks you should see a neurologist) If your problems are not caused by building anxiety, they could have their origin in the autoimmune field, or caused by post viral syndrome, etc.

Recently, I wrote a fairly long and detailed response to another poster with questions about this. You would benefit from locating it and reading it. The thread was started by MichelleG, and I think the subject title of the thread was "bulbar ?" ... something like that.

Good luck to you.

 

[Lotjo]

Thanks Rose. My ENT saw the sagging soft pallate and just said "huh, it does look low and your uvula looks pronounced - let's just continue on the prilosec and nasal spray for a few more weeks when I see you again." I told him I had been anxious about neuro issues and he scoffed at the idea. "Probably just gravity or allergies," he said. I hope you are right that this is mostly anxiety. I don't have problems swallowing any food or liquids now, but I just seem to have to cough a lot after eating & drinking. This makes me wonder if I'm aspirating. Is that something one feels or not? I will look up the post you mentioned. Thanks so much for taking time to respond.

 

[Lotjo]

Bless you Aly. Thanks for the encouragement.

 

[sadiemae]

https://www.alsforums.com/forum/do-i-have-als-als/12944-one-more-bulbar.html Here is the thread Rose was talking about

 

[Zaphoon]

There are some forms of MS that can elude detection by an MRI but will be detected in spinal fluid analysis. I think Primary Progressive Multiple Sclerosis is one form, if I'm not mistaken. Someone can feel free to kick me in the butt if I'm off on this.

Initial disease activity is often in the spinal cord and not in the brain (from what I've read).

 

[Lotjo]

Ugghh. Went for a slow easy walk last night - about 2 miles - to relieve some stress and get a little fresh air. My calf muscles didn't hurt but did tighthen up quite a bit and I noticed my right shoulder, neck / trapezius muscle feeling heavy and tired by the end of my walk - but not the left side -it was fine. When I got home I rubbed the muscles in that area and noticed that this muscle was much smaller than I remember it and definitely much smaller than my left side. This strikes me as even more odd because my right side is my "strong" side & has always been stronger than my left side. Can you have atrophy/wasting without complete loss of strength in a muscle? Everything I've read seems to suggest the muscle stops working and that's what you notice first. I can still move my right arm up and backward but it definitely fatigues easily. I'm just not clear on how the whole weakness thing presents itself vs. fatigue/stiffness. This combined w/ my hoarse voice, weird swallowing sensation, chronic coughing, sagging palate & left leaning uvula has me concerned. I guess I should just try to ignore it and wait & see?

 

[Lavender Lady]

I could not walk 2 miles at all. i do good to get to the mail box and back and sometimes just walking through the grocery store is exhausting.

 

[sadiemae]

Exactly! Good point Rox