Rib tightness and concerned I may have ALS

[Soop]

Hello,

I am sorry to be bothering with this, but I have really been struggling and would like to share my current situation to see what you wonderful people think.

About 4-6 weeks ago, I began experiencing twitching everywhere in my body. I understand this is typically benign, but along with this, I have been dealing with a “tightness” or “heaviness” in my rib cage, not in my chest, but around the sides and lower front and back of my rib cage. Right where the ribs meet the abdomen and the area stretching from the thoracic spine around the ribs. The heaviness or tightness is constant and very concerning.

I have become obsessed with this fear that I have ALS or some life altering diagnosis looming on the horizon. I have had many MRI’s done and blood work all coming back normal. I have had a nuerological exam that was completely normal, but the nuero wants me to get an EMG/Nerve study done to be sure. I am ultimately concerned that I have some respiratory onset of ALS, and I will honestly admit how pathetic I feel admitting these fears as I know how rare this all is. I am 40 years old and just feel so lost in this.

Things over the last 4 weeks have felt more difficult, but I am still relatively active and if I am being honest with myself, I still have a great deal of strength. I can still walk long distances and maintain good oxygen levels and a high heart rate(135-150bpm) without feeling short of breath. I guess I am just wondering if anyone has heard of MND manifesting in this way. When I breathe it feels like my ribs are tight. I also have sleep apnea, and my oxygen when I sleep with my cpap stays around 96% average, but I have occasional drops to 89-92% even with therapy. Mostly only two or three drops per night only for a few seconds.

I want to say how sorry I am if I sound like an idiot. I’m just very scared with the length of this discomfort and the perception that I have something that is going to be difficult to deal with like ALS and your insight might bring me some peace. Thank you all either way, whether you choose to reply or not. I have read many people’s posts and I have nothing but respect for everyone here and all of the challenges and bravery you all have in your journeys. Thanks so much.

I forgot to write my question. If this were ALS causing my symptoms of the tightness in my ribs on my sides and heaviness in my ribs when I breathe, would EMG pick up abnormalities. The nuero said they will be doing EMG on multiple areas including the thoracic paraspinal muscles, but would not be doing the intercostal muscles or diaphragm. Thanks again for any info.

 

[lgelb]

A few O2 drops a night for a few seconds is not a concern, but you can try taking your CPAP pressure a notch up (or if necessary down) to double-check your best setting, and let your team know if you have any issues. They can check your machine data to allay any fears of respiratory onset, and test your lung function if there is reason.

The answer to your question is yes. Nor do I think you have ALS. As you will have read, widespread twitching argues particularly against it.

If the EMG is normal, you might ask your PCP about a PT evaluation. Sometimes the areas you describe get weak if they're not being exercised, or if you're not using good form in some of your exercise, and that can cause heaviness. Making sure you sit and stand straight can help as well. You might also have a postviral syndrome; the PCP can track your labs and breathing to make sure.

 

[Soop]

Thank you for your kind response. I have a pulmonary function test (spirometry) and EMG/nerve study on Tuesday at a Kaiser facility. I am guessing if these two tests show up “normal” I don’t need to fear ALS after a month or so of “symptoms” onset.

 

[Soop]

So, I had my EMG/NCS and PFT done. I am concerned about this tension/heaviness/fatigue I am experiencing in my rib cage from my thoracic area around my sides and sort of in the front of my ribs on the lower side/upper abdomen. My PFT showed some abnormalities but my EMG/NCS were completely normal. I am trying to kick this fear, but it has been incredibly insidious and crippling for me.

I started a low dose of Zoloft yesterday (12.5mg) and will continue with my therapist and mental health journey, but I had a question for some of you amazing people here. I am also going to include the recap results from my doctor from the PFT and EMG/NCS.

Based on my results, is it possible that the doctors are missing something here regarding the potential of ALS of a respiratory onset or Bulbar onset. Please know that I am sorry for my desire to seek some reassurance. Here are my symptoms:

tensions/heaviness/fatigue feeling around my ribs/front upper abdomen. constant throat clearing. occasional O2 saturation drops during the day into the lower 90s (91-93) that quickly come back up to 95% or higher. raspier than usual voice. feeling the need to take constant deep breaths. Feel like my exercise capacity has been slowly getting worse. All of these symptoms have started about 4-6 weeks ago and are constant/persistent and seem to be getting worse. Doctors don't have a diagnosis for me.

Here are the test results:

PFT Impression: A partially reversible obstructive ventilatory defect is present with air trapping and a normal diffusing capacity. Test Performed: Complete pulmonary function tests, including spirometry with and without bronchodilator, measurement of lung volume, and diffusing capacity. Quality of Data: The patient's efforts are acceptable and reproducible.

Spirometry Interpretation: Spirometry shows an obstructive ventilatory defect with reduced FEV1/FVC ratio (FEV1/FVC pre bronchodilation was 59%, after bronchodilation was 67%) and reduced FEV1 (FEV1 pre bronchodilation was 3.01 Liters, after bronchodilation was 3.82 Liters). FVC pre dilation was 5.12 L, after dilation was 5.71 L. The degree of obstruction is mild. Following bronchodilator inhalation, there is a significant improvement noted (more than 10% increase compared with predicted value by ATS-ERS criteria) in both FVC and FEV1.

Flow Volume Loops: Flow-Volume loops show airway obstruction involving parenchymal airways.

Lung Volumes: Lung Volumes: An isolated increase in RV and RV/TLC ratio are noted, which may be indicative of airway obstruction or Expiratory muscle weakness. **This mention of Expiratory muscle weakness has me INCREDIBLY Worried about ALS**

Diffusing Capacity: Diffusing capacity of the lung is normal.

Respiratory Muscle Strength: Not done

Test Results EMG/NCS:

Nerve Conduction Studies
Motor Summary Table

Stim Site NR Onset (ms) O-P Amp (mV) Site1 Site2 Delta-0 (ms)
Dist (cm) Vel (m/s)
Right Median Motor (Abd Poll Brev)
Wrist 3.5 9.9 Elbow Wrist 4.5 23.8 53
Elbow 8.0 6.0
Right Peroneal Motor (Ext Dig Brev)
Ankle 3.5 5.7 B Fib Ankle 7.2 32.0 44
B Fib 10.7 5.4 Poplt B Fib 1.9 10.0 53
Poplt 12.6 5.1
Right Tibial Motor (Abd Hall Brev)
Ankle 3.4 16.4 Knee Ankle 9.1 44.0 48
Knee 12.5 9.8
Right Ulnar Motor (Abd Dig Minimi)
Wrist 2.7 9.2 B Elbow Wrist 3.4 22.0 65
B Elbow 6.1 6.4 A Elbow B Elbow 1.6 9.5 59
A Elbow 7.7 6.1

Anti Sensory Summary Table

Stim Site NR O-P Amp (µV) Peak (ms) Site1 Site2 Delta-0 (ms)
Dist (cm) Vel (m/s)
Right Median Anti Sensory (2nd Digit)
Wrist 45.8 3.4 Wrist 2nd Digit 2.2 14.0 64
Right Radial Anti Sensory (Base 1st Digit)
Wrist 31.6 2.0 Wrist Base 1st Digit 1.5 10.0 67
Right Sural Anti Sensory (Lat Mall)
Calf 10.3 3.7 Calf Lat Mall 3.2 14.0 44
Right Ulnar Anti Sensory (5th Digit)
Wrist 41.0 3.0 Wrist 5th Digit 2.1 14.0 67

EMG

Side Muscle Nerve Root Ins Act Fibs Psw Amp Dur Poly Recrt Int
Pat Comment
Right AntTibialis Dp Br Peron L4-5 Nml Nml Nml Nml Nml 0 Nml Nml

Right Med Gastroc Tibial S1-2 Nml Nml Nml Nml Nml 0 Nml Nml
Right VastusMed Femoral L2-4 Nml Nml Nml Nml Nml 0 Nml Nml
Right Iliopsoas Femoral L2-3 Nml Nml Nml Nml Nml 0 Nml Nml
Right Lumbo Parasp Up Rami L1-2 Nml Nml Nml
Right Lumbo Parasp Mid Rami L3-4 Nml Nml Nml
Right 1stDorInt Ulnar C8-T1 Nml Nml Nml Nml Nml 0 Nml Nml
Right PronatorTeres Median C6-7 Nml Nml Nml Nml Nml 0 Nml Nml
Right Biceps Musculocut C5-6 Nml Nml Nml Nml Nml 0 Nml Nml
Right Triceps Radial C6-7-8 Nml Nml Nml Nml Nml 0 Nml Nml
Right Deltoid Axillary C5-6 Nml Nml Nml Nml Nml 0 Nml Nml
Right Cervical Parasp Rami C3-T1 Nml Nml Nml Nml Nml 0 Nml Nml
Right Thoracic Parasp Up Rami T1-4 Nml Nml Nml
Right Thoracic Parasp Mid Rami T5-9 Nml Nml Nml


I am VERY worried about the results from the PFT and the possibility that they are missing ALS of a respiratory onset or bulbar onset. I want to say that I also realize that I am being overly concerned about something that is probably not the case, but this rib tension and heaviness or fatigue that I am experiencing around my body is so persistent and I am unable to get relief from it. Everything seems to have been ruled out with MRI's, CT Scans, Blood work, thorough neurological workup etc.

I desperately want to believe that this is a manifestation of stress and anxiety related tension, but I cant seem to break the cycle because the discomfort seems to be getting worse, slowly. I haven't spent a day without constantly checking my oxygen with finger tip pulse ox or wearing my wellue 02 ring for periods of time only to see O2 saturation drops and feeding this loop of concern.

Thank you all for you kindness and for even reading this if you do. I know that I am dumping a lot here, but I feel lost and alone in this and could use some guidance. Thank you all again so much. Everyone here is so kind.

 

[lgelb]

Do you have a followup with a pulmonologist or allergist? Not because you have ALS (there are no signs), but because according to the PFTs, you might have asthma or severe allergies ('tis the season). If you smoke anything, it might be taking its toll.

Or you might need different settings on your CPAP. I would certainly ask your team to look at your machine data.

But there is zilch on there to suggest ALS.

Stop using the oximeter! Home devices are not all that and excursions into the low 90s are nothing.

As you say, the EMG is completely normal. If the rib issue was ALS, it wouldn't be.

So all in all, you have a go-do, but it's nothing to do with ALS.

 

[Soop]

Thank you again for your kind reply. I am working very hard to get over this fear. What do you mean by a go-do? Thanks again!

 

[lgelb]

Something for your "to-do list." A positive step to take. That is the consultation with a pulmonologist or allergist.

 

[Soop]

I had a repeat PFT test done and it appears to be slightly worse than the first one done a week or so ago. It was stated that I have expiratory muscle weakness. I am waiting for an appointment to discuss this with a pulmonologist, but my discomfort is significant as my abdominal muscles and rib muscles seem to be incredibly tense and fatigued all the time. I am getting plenty of air in on inhalation, but on exhalation I have a struggle to expel the air.

I am wondering how BiPap can help with this. Wouldn’t it be more difficult to breath out against pressure like a cpap vs just breathing out against natural air with no machine? I’m having a hard time understanding how a bipap machine can help with expiratory muscle weakness if their is resistance.
I use a cpap every night and feel like that may be making things worse, but I have sleep apnea, so I need to still use it and based off of my wellue O2 ring, my oxygen remains relatively stable.

My obliques/abdominal sides area and the muscles around my ribs (stretching from my thoracic spine) are always heavy or fatigued or tight. It is relentless and unchanging at all times. I am always trying to get into a position that feels comfortable. This has me extremely worried that I have early symptoms of ALS, along with the fact that singing is more difficult, long walks are more difficult, literally everything over the course of the last 4-6 weeks have felt like they are becoming more difficult.

Thanks for any help.

 

[drewidia]

Highly Unlikely ALS.

As others have mentioned, I wouldn't spend a lot of time thinking about ALS, while anything is possible, there is little that is suggestive of it...
I started as UMN and then progressed to "bulbar" LMN which affected my speech and unfortunately now breathing... and my first EMG a year ago was rated listed a bunch of focal abnormalities which PSW and Fibs (1+'s), poor activations which they called "essentially normal" but pointed more at the Upper Motor Stuff and that was attributed to FTD / MND. your EMG is clean.

While we all were excited at the "not likely ALS" - the PLS issue was though about early on. A year later, here I am with ALS with greatly progressed EMG - but never "normal" like yours at the start. BTW The breathing for me was NOT an early sign - and worrying about it really isn't helpful.

To your bipap question: Your pulmonologist can help with getting your breathing addressed and may very well be at the center of a lot of this. If they are concerned about it, they may go BIPAP... If you have sleep apnea they still need to control airways via pressure while you sleep. So the reason natural air isn't a good idea isn't about normal breathing, its about the apnea when sleeping - keeping the airway open as they say (which is more that just the diaphragm etc)...

I got "upgraded" to a bipap a week or so ago, after the pulmonologist was worried about my breathing (which was inhalation weakness)... and will say that the principle is to have different pressures for inhalation (my weakness) and exhalation .. in a nut shell it helps them control a breathing direction to tune or work better with weakness while a CPAP is CONTINOUS (meaning pressures are same constantly). In my case they up the inhale pressure and kept the exhale.

Bottom line: Soop - Relax and take a deep breath - it's highly unlikely ALS, and you will give yourself Anxiety over it. Focus on what was identified - go see your pulmonologist / allergist and work the identified stuff ... not worry about some larger mystery.