Status
Not open for further replies.

dave8

New member
Joined
Jan 29, 2015
Messages
5
Reason
Learn about ALS
Country
US
State
NY
City
NYC
Hello,

I have read the sticky and I won't waste anyone's time

Here it is.

47 yr old male
First symptoms started mid July 2014: Extreme fatigue over a weekend, could not stay awake, weakness, pain, cramping in right leg, tried to be normal -- which for me involves a lot walking. Started to limp after 50 yards during a 2 mile walk that I do routinely. I turned back b/c I didn't know what was happening. Also, had a sudden aversion to heat and bright light. I'm a thin guy and I normally like the heat but hate the cold. Also experienced "butter fingers" in both hands. Dropping keys, credit cards. Both arms/shoulders felt incredibly weak. Shaving and brushing teeth made me feel like I had been hand painting a ceiling for 24 hrs straight. Went to work but had difficulty driving, steering wheel kept slipping thru my fingers. I had trouble judging distance and angles while parking my car as well. Bailed on work after only 2 hrs. Just clicking a mouse was exhausting. I felt like I needed to nap.

Saw a neuro who lined up an MRI of brain. He didn't have an initial opinion. I passed his neuro exam but he did only an abbreviated version.

MRI showed atypical plaques in the periventricular white matter. Neuro thought maybe MS but not enough to confirm.

Loads of bloodwork to rule out MS-mimics and many other things. All clear except ANA was borderline.

Still went to work. Weakness, fatigue, sometimes paralysis of right leg. Cramps, spasms, twitches, dizziness, tremors. Still hating light and heat. Some night sweats. Right leg weakens further and foot cramps when in the shower (heat?).

MRI of cervical and thoracic spine. No lesions but spinal cord thinning T1-T9. Neuro more suspicious of MS but still not enough.

Lumbar puncture - clean. But had bad experience. Needed blood patch b/c I was leaking fluid. Horrid pain in head and neck; in hospital for 3 days. But Neuro now leaning away from MS.

Developed Atypical Trigeminal Neuralgia - given Tegretol to quell the pain. Neuro leans slightly back to MS.

Had Evoked Potentials -- Vision and Auditory -- both clean. Neuro says probably not MS.

Continued same symptoms plus TN and now burning in feet and legs --at worst travels to arms, shoulders and scalp. Sleep impossible. Neuro prescribes Lyrica for neuropathic pain.

Same symptoms but now I lost muscle mass in my neck and trapezius muscle both sides. Salivary glands and even a small lymph node can be seen. Groove under the jaw line. Very gaunt.

Neuro does EMG in office. From my knee down on both legs. Results normal.

Neuro wants to try physical therapy to build me back up. After a few sessions of modest intensity, I couldn't continue. Legs extremely weak (clinical). Pain in neck and trapezius.

Neuro lined up follow-up MRI on brain. Results should be any day now.

Current symptoms: Weakness, fatigued -- worse when I try to do anything normal --like my laundry. Most anything wipes me out. Still have cramps, twitching, dizziness, atrophy now in my left shoulder in addition to my neck and trapezius. Still have TN but Tegretol helps in managing that.

I know this sounds MS-like to start but has evolved into some things that sound like MND. Not too many things cause muscle atrophy -- MS doesnt unless there's disuse. I was in great shape before this -- active, working out. physically fit. But my neck and traps have never looked this way post-puberty. I look like a swan. And now my left shoulder muscle is eroding. My calories are up. I'm actually getting a little fat so I'm not starving. Both my neuro and my employer suggested I go on disability to take out the work stress. I reluctantly agreed.

In summary, based on the sticky:

Clinical weakness: Yes, in my legs. But I pass the rest of the typical neuro exam. But relative to what I know of myself, much weaker. I could do 50 strict push-ups when in shape, 35 when out of shape. Now I can only do 6 -- but I can still push and pull during a neuro exam.

Atrophy: Yes, in my neck and traps. Now my left shoulder is starting.

Hyperreflexia: No, I don't exhibit that during the neuro exam.

Speech and Swallowing issues: Intermittently. But I had a barium swallow that shows no obstruction. Speech? I have a hoarse voice already. I slur sometimes but I attribute that to the meds. Brain fog and pausing while trying to get a word out. But my tongue passes the neuro exam.

Twitching: Yes, in many different spots. Some of which are now atrophied. But I've had twitches here and there for many years. I thought it was normal for anyone who exercises. But I have them more often in the past month.

Pain: Yes, burning, aching, stabbing. Both arms fall asleep (pins & needles). TN pain in the right side of face. Shooting pain in voice box at times. Pain from cramping/spasticity.

Anxiety: Yes. I dont know what I have after 6+months and I'm not working. It looked like MS at first now much less so. I looked into CIDP and other possibilities on my own but nothing is quite matching.

I have no pro-ALS/MND, con-ALS/MND statement to make. I'm just unsure and confused. And more importantly, I'm not getting better. My chief concern is really the atrophy continuing and its cause.

Thanks in advance to anyone who bothers to read all this and reply.
 
Thanks for making the post organized and readable and for reading the sticky!
Sorry for all you are going through. The onset does not sound like ALS and the EMG argues against it. It does sound like MS- but the lp and the evoked potentials were ok... Has MG been ruled out? What is your neuro's specialty? It sounds like you need to see a neuromuscular specialist at least for an opinion is you have not already done so. And see someone who specializes in MS. Fortunately in NYC you should have access to some good specialists
 
Nikki J,

Thanks for replying so soon.

The neuro I was seeing happens to specialize in MS (just a coincidence, I didn't go to him for that reason).

I just started seeing another neuro -- who only does MS -- for a 2nd opinion. He reviewed my records and ordered more blood work.

I don't know about MG; it may have been covered in all the blood work I've had done. Also, I don't have any droopy eyelid problems; and it doesn't account for the muscle atrophy as far as I know.

Dave
 
Your best next step is already scheduled - your Tuesday appointment.
 
Sorry GregK.

I know it's just the next appt. I used to get excited that something would be unearthed at the next appt and the next and the next. But now I extrapolate beyond that b/c nothing comes from them. I'm guessing there will be more EMGs scheduled for different areas of my body -- but what do I know? It just gets scary when the doctor(s) doesn't seem to know either. At one point it was thought that I may have Paraneoplastic Syndrome -- neurological symptoms stemming from some underlying malignancy. That was dismissed after some tests for tumor markers. There's not much left on the list of muscle atrophy causes.

I have a "neurological disorder that results in severe neurologic dysfunction".

That's the official doctrine thus far.
 
Status
Not open for further replies.
Back
Top