Neurological symptoms started 25 years ago.....

stuffyearsago

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Thank you in advance for reading about my odd, long history of symptoms, which started 25 years ago, came and went for 10 years, disappeared for 15 years, and are now back and considerably worse as of 10 weeks ago and are now having a incapacitating impact on my life, largely due to breathing problems which have very recently developed. I am a 53 year old female.

It started 25 years ago when I was 28 years old. A rush of dizziness woke me up in the night in 2/1994. Those rushes of dizziness continued sporadically during the day in the following weeks. It was not vertigo - just a rush lasting a couple seconds and residual light-headed feeling. Soon after, I also had a strange head pressure, like a pressure in my sinuses or maybe behind my sinuses, although my sinuses were clear, and I've never had allergies nor sinus problems. A few weeks later, a new symptom of chest pressure appeared, like a constriction around my upper chest, mostly felt in front, like my upper ribcage was being squeezed. In 5/1994, I woke up with numbness in my forearm to my pinky in my left hand. Then in was in my right hand soon after. It wasn't complete numbness but rather loss of sensation, tingling, buzzing, burning - all sensory stuff. All of this spread to my limbs - but mostly felt more intensely in hands and feet. I'd go through a cluster of days where I'd have complete numbness in an arm waking up, but I could usually shake it out. These symptoms initially lasted a very long time, they would wax and wane, move around to different areas of my body, and I think there were periods (several months) in which they'd largely go away. This went on for 10 years. I saw many doctors - several neurologists who dismissed me (often with a diagnosis of anxiety) since my symptoms were always subclinical, and tests were negative. I was young and alarmed although most of these things were sensory and largely just uncomfortable and worrisome as I had always been healthy and knew something was not right. At some point, I was convinced I had mild MS, despite nothing showing up on MRIs. I had no weakness during those 10 years - not really even a perception of weakness and certainly nothing that lasted.

Then at some point, maybe in around 2004 or 2005, without any reason, the symptoms went away. A couple years prior, I had made an effort to change insurance and see an MS specialist - had my 4th MRI from over the 10 years - negative, again. In 2004, the MS specialist said we could do a spinal tap, but I thought about it and the fact that it was invasive, and again, at that point, my symptoms seemed better, so I decided to wait and see. The symptoms went away by around 2005, no idea why. I took Vitamin D3, B12, and a multi-vitamin during that time, nothing else. Then in 2007, I was motivated to start exercising and lose weight - had been very overweight. I was in the best shape of my life by mid 2008 and hiked to the top of Half Dome twice over the next few years, went up Mt. Whitney 3 times, and hiked and backpacked all over Yosemite High Country. Over the last few years, I had forgotten about my old symptoms, decided that I did not have MS and wrote the whole 10 years off as a hormone or metabolic syndrome issue. The symptoms were gone and remained gone until 4/20/2019.

On 4/20/2019, I went hiking with a friend. We were driving to our destination when I felt a tingling, buzzing, burning down my arms - I was immediately worried as it reminded me of the symptoms that I had not had for 15 years. I felt a little ill and shaky, tried to convince myself it was blood-sugar (have no known issues, though), and continued to the destination and went on the hike. The sensory symptoms came on like a chill over the next days, and at least once or twice, I had that same strange wave of dizziness from years prior, lasting a couple of seconds and leaving we in a residual fog of light-headedness. But this time, it was more intense.

On 5/6/2019, I had a new, completely unfamiliar symptom. I was going on a charity walk and standing, just talking to friends, and I suddenly felt a really abnormal weakness sweep down my legs, making it feel like my knees may buckle, or my legs would not hold me. I lifted my legs up and down to try to shake it out, but it was still there. I walked around a bit, but I felt shaky and weak in a way I had never felt before. I still did the walk, and afterwards, I did an extra several miles with a friend to try to walk it out. I walked a total of 10 miles that day, but I knew something wasn't right with my legs.

The last thing I wanted to do was see a neurologist, but the persisting leg weakness frightened me, and I knew I'd better see one. I started thinking that this was MS after all. The neuro ordered an MRI - brain, C-spine, even T-spine this time, with contrast. Negative again.

At some point, weeks after the leg weakness, I began having twitching everywhere - legs and arms, mostly, but have had them in the back and face. I rarely could catch a visual of the larger twitches - were not long lasting. Most of my twitching has been rapid fire, small internal twitching mostly in various limbs, sometimes back, face, comes and goes.

Started having weakness soon after in my left tricep and down my arm - burning, tingling. In retrospect, I remember having chills down my left arm that I blew off months ago. That weakness is sometimes in my shoulders down. I have episodes of intensity of this which make my arm movements shaky from shoulders down, but then improve.

On 6/4/2019, I started having the strange head pressure from years prior, where it seemed like my sinuses were under pressure even though they were clear, but it was way more intense and somehow seemed to affect my breathing. It was almost a painful level of pressure that was in the center of my head more toward the left side - felt like an ice cube in my brain - not like a normal headache, though - more like something pressing on a nerve. That night, I could not fall asleep without awaking in terror that I had stopped breathing. But when I made a concentrated effort to breathe, I could. It just seemed like my breathing would become very shallow, and I would suddenly come out of my quasi-asleep state in a panic - this happened over and over. Years before, it never impacted my breathing like this.

Ended up at the ER around 6/10, feeling shortness of breath, but the feeling passed while there - heart and lungs were fine. O2 was fine. Shortness of breath feelings have come and gone since then. Ended up in the ER a second time days later due to accidental hyperventilation. I felt like I was not breathing due to constriction but ended up overbreathing and hyperventilating - had never done that before - totally accidentally got myself in that state. Now I recognize it and can stop it. They gave me Xanax, which I used to sleep - note that I had never such meds to sleep before. I'd never had sleeping issues before this breathing thing started happening on 6/4. Something periodically restricts my breathing and then improves, maybe much like how the other symptoms intensify and improve?

Around this time, I noticed that it was terribly uncomfortable to sleep on my right side. I felt like I was sleeping on a hump, and there was pressure in my upper abdomen. I had a friend take a pic, and my back is suddenly looking asymmetrical and thicker on the right side. When I laid down on my back, it was like there was a band right below my ribs, all the way across, and there was a repeating spasm or contraction or something, right in the middle of my upper abdomen. It wasn't quite a twitch because it rolled. I feel like something has happened to my upper ab muscle. I've noticed muscle loss elsewhere - left arm, quads - all of my muscles just seem smaller. The spasm has stopped, but I still have the tight feeling in my upper abs right below my ribs, and I still have the thickening on the right side of my back, which makes it uncomfortable to sleep.

I also lost about 15 lbs in 2 weeks although I was eating much less as I was convinced I had MS and try Paleo and just not hungry. Also, just prior, I had been trying to lose some weight, going to the gym. I even pushed the gym after leg weakness and kept hiking until the breathing problems started.

Could this muscle loss happen so suddenly, or am I just suddenly aware of it? The issue with sleeping on my side and the abdominal issue seems sudden, but in retrospect, I remember a discomfort when sleeping on my belly earlier on. There was one thing that did start many months ago, and I blew it off - it was a feeling of numbness in my back on the right side, just below my bra strap. It seemed to come and go, and I mostly only noticed it when sitting and crossing my legs and figured it was my posture.

Currently, I find it extremely had to sleep - there's a thickening on the right side of my ribs and a tightness in my abdomen that pulls when I lay on my right side. Then if I lay on my back, it pulls right below my ribs. Then if I lay on my left, it also pulls, and it seems harder to breathe. I used to sleep so easily - 8 hours, never waking. Now, I can only sleep with Trazodone, which I'm taking instead of the Xanax. It at least gets me a few hours of sleep. I generally wake up at 3 am in fear and anxiety about what's happening to me.

I have had weird feelings in my tongue and jaw and throat. My tongue sometimes feels numb or large. A sore feeling sometimes comes over my jaw, and a tight feeling around my neck. These things intensify and fade, over hours.

I also have woken up with a numb arm at times. Most recently last week, I had a numb pinky, ring, and middle finger and numbness across the top of my hand down my forearm in the right arm, and then the next day, the very same thing in the left arm. Has not happened this week.

I saw a neurologist at my HMO's ALS clinic. He gave me a clinical exam (6/24) and an EMG and a nerve conduction test (7/2), which he declared normal and essentially dismissed me. I've also seen a pulmonologist who has declared my lungs fine. I even had a CT-scan yesterday, which was normal. I had many blood tests to rule out other things. I would like to get a more thorough Lyme test (western blot), though. I have not had a spinal tap.

I am thinking that all of this is a continuation/worsening of what started 25 years ago, continued 10 years, and went away for 15 years. Is it even possible with ALS? I have read of people talking about more subtle/insidious symptoms years prior. I also read about an effort to study medical records of ALS patients to try to identify early warnings or identify commonalities, and that article indicated some ALS patients were misdiagnosed with MS, but it indicated it was in the 5 years prior.

Currently, my experience with undx'ed neurological symptoms and several neurologists over a 10 year period 25 years ago, on top of still not having clinical signs, is making me look like someone with an anxiety disorder. It's horrible because my symptoms were physically manifested then and are physically manifested now and considerably worse, with weakness and muscle loss as new symptoms - albeit still subclinical in neuro tests.

I am going to ask the pulmonologist to continue to check my breathing. There was some abnormality detected in my pulmonology tests, but it was subtle, and the pulmonologist dismissed it as mild asthma (which I've never had). I also had a sleep study, but I only had the heart/O2 device, and they called that minor obstructive sleep apnea. But I never had sleep apnea nor sleep problems prior to 6/4. Now, very suddenly, I can't even sleep without Trazodone, and I have this thickening on the right side of my back and tightness across my upper abs. Sleeping on the left side seems to restrict my breathing more and create a pulling feeling in my upper abs.

If this is ALS, I know it's atypical. I'm extremely frightened, especially because of the impact to my breathing, and yes, I definitely do have major anxiety and fear because of these symptoms. But the symptoms are causing the anxiety and fear. I've had no stress in my life that could have brought this on.

Thank you so much for any help, advice, insight, opinions, comments.
 

KimT

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You have lots of symptoms but none of them are anything like ALS. Your sudden dizzy attacks sound like classic panic attacks, I've had them.

It's possible you have more than one issue. I would probably go to my GP and get some blood work done but I would not worry about ALS.

Best of luck.
 

nona

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I'm sorry that you're frightened and not sleeping. Nothing you describe sounds like ALS, and your exam and EMG do not support that diagnosis.
 

stuffyearsago

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Thank you both for your input, KimT & nona. Just wanted to add that my EMG only included my right side and a couple muscles on my left after I told my neuro I had felt weakness and other symptoms everywhere but somewhat more on the left, but I also read in the posting rules that it should not really matter. He did the needle test in both of my quads, and both feel weaker and smaller and have twitched.

KimT, when I was still just lurking here last week and searching the forum for my symptoms, I found one you posted on dizziness - Dizziness and ALS . But it sounds like your dizziness is something different from what I describe. Regarding my weird 2 second "waves" of dizziness - I totally see where it could sound like a panic attack, but it's happened so often, was my very first symptom 25 years ago, that I'm not panicked anymore. The first couple times, yes, I was panicked and thought I was having a stroke. But then it would just happen walking down the street or sitting at my desk casually, and I realized it wasn't killing me imminently, so I took it in stride and still take it in stride. It's just that it's connected to all of this, and I have scoured this forum for dizziness related to ALS, and I have found nothing - not even Bulbar affiliated, so I have no idea what this dizziness could be.

I have also never heard of ALS coming on as sensory without even any perceivable weakness and staying sensory for 10 years and then disappearing 15 years and then coming back. Whatever my current problem is, it's connected to 25 years ago, only so much worse now and includes weakness and the shrinking of my muscles and whatever it's doing to my back and upper ab muscles. I'm worried that it's done something to the muscles in my back and therefore causing this breathing issue not to mention also shrinking those muscles and throwing off the alignment of my spine. It's like this thing happened overnight....right after the breathing problems started.

I have a PCP appt. tomorrow. This is really seriously impacting my life because of the breathing issue and impact to my ability to sleep. Feeling weak when walking and other weakness in arms, which is pretty alarming, is still secondary to breathing. The weird feeling in my tongue/jaw/throat is pretty awful, too. All of it is horrible and has come on so rapidly, hitting all parts of my body, essentially since 5/6.

Thank you again for your input and advice.
 

lgelb

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If you have mild sleep apnea, and remember lack of refreshing sleep can cause pretty much everything you listed, why not try BiPAP (well, they will want you to start with CPAP) and see how it goes? If you don't want the time sink of dealing with a DME, get a script and buy a used machine for <$200; pass it on to someone in need if it doesn't work out.

As Kim notes, anxiety makes it all worse, and lack of sleep exacerbates anxiety.

Did an ENT evaluate you for ear-related dizziness? That can certainly come and go.

ALS doesn't belong on your worry list, nor MS. As you note, what you describe in no way resembles ALS, and I would add MS to that. As for whatever you think your muscles are doing, your PCP can baseline your strength, which is the real issue here, and possibly order an evaluation with a PT with a neuromuscular specialty to see if your symptoms can be improved. Meanwhile, I would do lots of stretching, walking and swimming.

Best,
Laurie
 

stuffyearsago

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Thank you for the input and tips, Laurie. I did not talk to an ENT yet. The dizziness is part of this cluster of symptoms. The problem that's bothering me the most right now is this tightness like a band in my upper abs right below my ribs, and it also looks like my ab muscles are considerably smaller. Then in addition to this, the right side of my back feels like it has a numb patch and is weirdly bulging to the right. It's a subtle thing to see, but it makes it really uncomfortable to sleep, along with the breathing issue. It just seemed to happen really fast - from breathing problems, and a couple days later, the abs and then the issue on my back. I will see what the PCP has to say tomorrow. I'm going to ask for another breathing test, too, to see if anything has changed.
 

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In reference to my experiences with dizziness, I've had more than one issue. The dizziness from panic disorder is not vertigo. It is a general feeling of being uneasy, off balance and comes on in waves. I've had that in my 30s.

The other dizziness I experienced was a result of a car accident in 2000 when I damaged both vestibular nerves and dislocated my TMJ. Along with that I had migraines. That dizziness was true vertigo where I couldn't stand and the room was spinning out of control for hours. I was misdiagnosed with Meniere's locally, then found the actual causes when I went to U of Pittsburgh Balance Center for thorough testing.

NEITHER type is associated with ALS. Unless, the thought of having ALS is giving you panic attacks.

Glad you're seeing your GP.
 

stuffyearsago

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Thank you, Kim. My PCP called in sick, so I saw someone else....turned out to be a waste of time. Still going to follow up with pulmonary doc.
I know I mentioned the dizziness as my first symptom from years ago, but as of today, my worst problems are:
  1. Breathing constriction (comes and goes in intensity but always there on some level).
  2. Thickening in back on right side and enlarged hump (showed up suddenly after breathing problems started on 6/4) along with band across upper abdomen that feels tight. These two issues make it hard to sleep - laying on right side feels like laying on a hump and is from ab tightness feeling, laying on back is also uncomfortable, and laying on left make it hardest to breathe. Even though the ab feels tight, it is soft to the touch, and feels like my abdominal wall has shrunk.
  3. Weakness in arms and legs (also comes and goes in intensity).
  4. Pressure in head, around sinuses, sometimes feeling of large tongue, sore jaw, and grip around throat - also comes and goes in intensity.
It's weird how all of this came on just 2 months ago and has really intensified. Whatever it is, it's hitting all areas of my body. I have the twitching, too, but it also comes and goes. I also have burning/buzzing that comes and goes. The dizzy waves are rare and don't bother me much. They were more of an early symptom before these things went full throttle.

There's also something that plays into my anxiety big time - it feels like my muscles have shrunk - not just a couple but all of them, maybe marginally more on the left side. They all feel different and look different to me. It's like my muscle definition is gone. Even the bottoms of my feet feel flatter.

Thank you for listening.
 

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Hello-

With all the different symptoms you are reporting, the length of time they've developed and the previous answers you've received here, it's pretty clear you are not looking at ALS. It will be good for you to continue to seek answers with your medical care providers.

I also recommend you read through the Read Before Posting link if you haven't done so already: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms! It covers a fair amount of ground with regards to concerns about various symptoms and provides some advice about what to do when looking at odd symptoms.

I don't believe you will find the answers you are looking for here on a forum specific to the needs of folks with ALS and their caregivers. While it's good news you don't appear to be showing signs of ALS, I can imagine it would be hard to not know what's going on. I wish you well in your search and hope your pulmonologist will be able to provide some answers and guidance moving forward.
 

Bestfriends14

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Here's the good news-nothing you have posted has anything to do, or resembles in the slightest, ALS. ALS does not have body wide twitching, dizziness, or all over atrophy that comes on in two months. No matter the amount of super long posts that you write will show ALS.

The bad news is, you'll have to continue to work with your doctor to find out what is going on. The more you focus on ALS, the longer you delay finding out whatever is really going on with your body because it simply is not ALS.

I sincerely wish you all the best. Take good care
 

stuffyearsago

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Thanks to all of you who responded to me. I appreciate your input very much. I will respect the rules and will not write again until I get some kind of diagnosis of something. I would like to eventually respond with closure since I think it may be helpful to others, maybe some day. Again, I thank you all so much for your kindness in taking the time and effort to respond to me. God bless you all.
 

stuffyearsago

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I just want to correct the time periods noted in my post. I said I had symptoms 10 years and then nothing for 15. I've data mined my records and e-mails from when I complained about symptoms many years ago, so I have clear dates now:

2/1994 - 9/2006 (12.5 years): Flare period, dizziness (brief jolts of spells lasting 3 seconds followed by disconnected feeling), numbness/tingling/burning/vibrating/twitching, waxing and waning in intensity during period of flares lasting months sometimes, feeling of fullness/pressure in head, behind sinuses. In 2006, I emailed an MD friend from college about strange leg weakness. I remember having this, but it was transient.

(9/2006 - 4/2019) (12.5 years): No symptoms, no neurologists.

4/2019 - present: In retrospect, may have started late 2018 in back muscle, which felt like sporadic numbness, but now I think it was tightness or spasticity. My worst problem is breathing. I have constant shortness of breath. My MIP/MEP are abnormal on pulmonary tests. However my VC is fine. They are saying asthma. I never had asthma and don't even have allergies. Posting pulmonary results:

Capture.PNG


I feel like all of my muscles are weaker while none are actually failing. I am struggling every day to breathe - I think spasticity in my chest, back, abdominals, and maybe diaphragm is why my breathing problems vary in intensity - although they are always there on some level. My upper abdominals are so tight and sensitive now that I can't even stand for the seatbelt to touch them.

I am not being taken seriously because of what happened to me during those first 12.5 years of undxed symptoms that remained subclinical with all tests (MRIs, etc.) negative. Honestly, I though it was mild MS then. ALS never entered my mind for a moment. Unfortunately, I am not psychosomatic. Those things were real then, and they're horribly real now. I know my body, and I see and feel changes, but it's not something the doctors can see. All they can do is the EMG. Is it possible to do the EMG on abdominals or intercostals? Even though I've had leg weakness and do feel my leg muscles are smaller, the EMG was negative.

Also, something has happened to my nose. It feels like the passages are smaller, it whistles now, and it's harder to breathe from my nose sometimes despite not being congested. The fullness/pressure in my head behind my sinuses is sometimes intense, but this too is variable.

I don't want to bother anyone here. I don't expect a diagnosis nor even a response. A large part of my reason for updating my thread is to document my case and keep it accurate. I know I need to see the doctors about diagnosis and further help. I have an appointment on 8/7 with yet another Kaiser neuro. Then I have one at UCSF on 8/14 with a specialist. I hope I can get some kind of help. This has completely incapacitated me. I know it's not like 95% of ALS. I know it's probably not like 99% of ALS because of my history of things actually coming on more mildly for a full 12.5 years and then even more unusual - it went away for 12.5 years. This with what is normally considered a "relentlessly progressive disease". Yet, something is terribly wrong with me. It came on hard and systemically, albeit worse with breathing, and I'm worsening and very scared and just hope I get some help soon.

Thank you, and again, I don't want to bother people here. I just want to keep my thread accurate and continue to document my case.
 

KarenNWendyn

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I don't want to bother anyone here. I don't expect a diagnosis nor even a response. A large part of my reason for updating my thread is to document my case and keep it accurate.
While I understand your need to document your case and accurately report the symptoms and timeline, an ALS forum is not the place to do it.

I suggest you get it all written out and organized as you have done and bring that to your medical appointments, not to us.

Posting it here suggests that you have some underlying agenda that involves people here. This site is not a place for storing medical records.

Feel free to post an update after all your medical appointments, but not before.
 

stuffyearsago

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Went to the UCSF ALS Clinic yesterday. Still no clinical strength issues, so ALS specialist said, "not ALS". Respiratory therapists, however, found my MIP and MEP to be worsening - 42 and 44, respectively. My vital capacity is still ok. They recommended me for a NIV breathing machine, cough assist, and suction remover. They said my diaphragm and abdominals are weak. My upper abs are definitely weak and sometimes so horribly tight and sensitive that I can hardly walk. Sometimes, they have a twitch that's like a wave moving under my belly - a very uncomfortable, tight contraction. The muscles in my ribcage are also very tight sometimes.

While I was at the clinic, I had what I think must be an autonomic storm. I've been having these horrible things more and more often - in fact, went to the ER twice over them now. They could easily be mistaken for panic attacks because my blood pressure shoots up, and my heart rate bounces all over the place - from 80's to 130's, and I have this intense chest pressure like it's going to explode. It feels like my circulation is constricted when this happens. It's like my blood isn't pumping to extremities very easily and gets backed up and then forces through, making my heart rate erratic, noticeable when looking at it on a finger oximeter. The other thing that happens is my feet sweat intensely. I also started shaking to the point my teeth rattled. When this happens, I feel so on edge that I can't even think straight. I also have to pee constantly and fluctuate between hot and cold. These attack are horrible, and I can't get out of them. I've talked to the docs, and they suggested valium, so I've tried that. It doesn't always work, so I'm now adding metoprolol. What could be do thing thing to my circulation? BTW, I've also noticed that since getting sick, it's really hard to get blood from my arms or insert an IV.

The UCSF ALS clinic doc did seem to agree that it was an autonomic storm. She gave me a referral to see a specialist at Stanford. But what could cause autonomic (brainstem) problems other than trauma, tumor - I've had neither. That leaves neuro diseases.

I tried a CPAP machine, but I found that it's hard to exhale from it, so I feel like it pumps me full of air to the point of hyperventilation. Going to try to get the NIV....or BiPAP - are they the same?

What could this be if it's not thoracic onset ALS? My heart and lungs are fine, and I've had every possible test at this point....even an MRI of my chest muscles. For whatever reason, the MRI didn't catch the swelling in my intercostals, which has been there since June. It's not that I don't have weakness elsewhere - it's just that it's not clinically visible. My hands and feet feel like they have lost all padding, yet I can stand on my toes and heels. But even my finger tips feel bony. I also feel muscle loss from my rear end - plenty of fat remaining yet I feel like I'm sitting on bone.

One Kaiser neurologist has suggested treating this empirically with steroids. Sounds good to me - I'll try anything at this point. But I wonder if this would be difficult on my breathing? And what if this is ALS? Will it make it worse? If this is ALS, I'd have to agree it's a very atypical subtype - with 12.5 years of much milder symptoms and then 12.5 years of feeling fine, so maybe it would respond to something....

I feel like I'm in such a horrible position for getting help. I have no recourse for breathing or autonomic events - if I go to the ER, they just want to check heart and lungs and send me home - they would never consider a muscle issue. When I suggest to them that it's muscle, they mostly just write me off as anxiety disorder. So, I have had no way to get help for either breathing issues or autonomic storms, which have been horrible. I'm hoping this valium and metropolol will help. And....I'm going to beg for a NIV (or BiPAP?) machine today - have a pulmonary appt.

I have worn a fitbit for a couple years, and was walking 4 miles per day at 4mph and going to the gym back in April before getting sick. Now, there are days where I feel too weak and off balance to walk 100 feet. I also noticed per the fitbit that my resting heart rate is higher - went from 62 bpm to 75 bpm.

Thanks for listening.
 

KarenNWendyn

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Sorry to hear you’re having all these issues.

But your story does not suggest ALS and you’ve been cleared of ALS by more than one neuromuscular specialist. We really can’t answer your questions. Please address them with your team of doctors.
 
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