I'm lost - please help...

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AdamAli123

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Learn about ALS
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Massachusetts
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Somerset
Good Afternoon,

Firstly, let me start off by saying how much I respect the brave men and women on here sharing their stories and battles. The selflessness I see here reassures me and restores a lot of my faith. Thank you.

I am currently lost and am seeking advice/direction - what I'm learning is what you all already know... you have to be your own advocate when it comes to your medical help. This is why I want to share my story and see if you guys can give me any leads as my doctors cannot...

It all started this past October 2016 when I tried to run up my stairs - mind you, I'm a 36 year old male in athletic condition. I felt my thighs were so overworked, weak/sore that I had trouble and had to walk very slowly up the stairs... I didn't think much of it but days later when I tried to workout (normal workouts mostly cardio) I would only last a few minutes and the cramping, soreness and pain was difficult for me to complete the workout. I went into my PCP who ran some blood (he didn't even check CPK level) and told me I was fine and just overworked, etc... Fast forward another 2-3 weeks my exercise intolerance was worse and after a workout I couldn't extend my arms... that's when I went back and he finally checked things like CPK and when I was driving to work the next day he called me and told me to check myself into the ER that my CPK was 33,000 and I had Rhabdomyolysis.

I was in the hospital for 5 days for it to come down by running saline through me to ensure they could flush it out without ruining my liver or kidneys. They ran every blood test, ultrasounds of liver, kidneys, everything.. nothing turned up. The final diagnosis was non-traumatic rhabdomyolysis with no cause that could be determined. They did seem interested in the fact that 2 to 3 months prior I was on Ciprofloxacin (Levaqin class antibiotics) for prostatitis. They said that this antibiotic was strong and linked to skeletal tissue damage and mitochondria damage, etc...but that it had been too long prior and they can't deduce that at this point.

Since then I've kept a lot but I fit into the category almost all of ALS symptoms (mind you I'm realistic and realize this mirrors BFS, MS, etc..). I have muscle weakness, mostly in my legs and specifically right calf is worse than any other spot, but it is widespread and my whole body is intolerant to exercise. My coordination is definitely off and I'm experiencing some intermittent shaking and my handwriting is even different. I am experiencing vertigo and tinnitus on and off... My reflexes are very responsive and I believe much more than before - possibly hyperreflexia. hurts in my feet and shins when I lift up my feet. I always have a feeling of that "lump in the throat" but that could be nerves too... I find myself tongue-tied a lot too and some occasional slurring. Most recently I have been experiencing fasciculations ALL over my body - neck, hands, calves, feet, groin, buttocks, biceps, triceps, jaw... you name it. And some last up to 10 seconds and are visible from the skin. Any sort of exercise will cause a "pulled muscle" or muscle injury type feeling even if it is brief. I have a full log and documentation of the soreness/pain/numbness/aching and other issues and will post it at the bottom of this post (if you've made it this far thank you for reading). I'm beginning to get depressed and lose hope as for more than 6 months I haven't been "me" and haven't been able to do what I typically do... A few weeks ago I dropped of my daughter at her recital and had to park around a quarter mile away... all down hill walking and by the time I got there my legs very sore and painful and I needed to sit down for a good 10 minutes to sort myself... walking back up hill to the car I had to stop 2 times... due to the very hard and weak/sore feeling in my legs. It was 20 degrees out which I'm sure didn't help.

I've seen my PCP, a Rheumotologist, Neurologist to no avail... The Rheumotologist thinks it could be a myopathy that I had since birth but was triggered by the Rhabdo which could have had any trigger itself such as a viral infection of the muscles which is now gone so no way to confirm... In any event, he did say "everything was on the table" due to my myriad of symptoms... and felt, along with the neuro, that multiple issues may be going on so it's hard to say "oh, MS or ALS or whatever doesn't present this way" because there's most like more than 1 culprit afoot. With that said, they both had concern that my most recent CPK showed 290 when my other's were all around 100 and I haven't exercised at all... so they had an EMG done of only my right arm and right leg - they said it came back normal. Now I heard this is a very good thing but not an "out of the woods" for many of the big neuromuscular diseases... I had a bone marrow biopsy done as my whites have always been a little low and platelets too.. I have ITP and they said it had nothing to do with what I'm experiencing.

The only thing left to do is an MRI and possibly muscle biopsy if they see anything in my right leg.. I'm pretty sure this will yield nothing and I'm back at square one... so my big question is what else should I be doing, asking, advocating for, asking for, etc...? Is there something obvious we're missing or should be doing that we're not?

Once again, I truly appreciate everyone's insight, assistance and bravery. Regardless of my outcome, I will continue to support, donate to, and be a part of the ALS community. Everything happens for a reason and I believe that this first reason is to open my eyes to what is going on and do whatever I can to help.

Thank you,

Adam Ali

My Medical Log as stated above:

*note prior to 10/1/16 – lots of tingling, weakness, twitching and pain in right elbow from Tennis? Copper sleeve with band for tennis elbow seemed to help. Band presses on the tendon. Played tennis all summer with no noticeable issues other than the right elbow.

10/1/16 – first noticed issue, horseplay with brother in law, pain in thighs after walking up stairs that night – not proportionate to exertion.
10/18/16 - did “ab ripper” 15 minute workout, pain in hips and thighs – not proportionate to exertion.
11/1/16 – pain in feet
11/14/16 - light gym workout, pain in right calf, left arm (can’t straighten), shoulder blades – soreness and pain, again not proportionate to exertion – went to Dr. a few days later due to the pain/soreness not going away.
11/18/16 to 11/21/16 – admitted to hospital cpk = 33,000
11/22/16 - arms hurt to lift over my head, right arm worse and pain inside arm some right arm/shoulder spasms and general soreness everywhere. Can't put right arm far behind back without pain .. for 3 days
12/4/16 - left hip socket pain from sitting needed help moving left leg took few minutes to get up severe pain 2 minutes then soreness next hour until bed. Could lift left leg up just not left like Indian style. Feels enflamed and very sore and painful.
12/5/16 - same hip pain but less and right knee (same as feeling in the hospital under knee cap). Lots of cracking and snapping sounds when moving (from joints).
12/8/16 - back of right elbow spot joint pain left a little nagging. Same leg issue at ball game bleachers where it locked up at the hip joint and a lot of pain/soreness. Lasted 10m.
12/11/16 – cleaned gutters on roof of my house, afterwards groin pain from sitting on roof, above knee/thigh weak.
12/13/16 - left leg/mostly where meets hip socket pain sore weak... doing issues this day like putting the order away at work and dribbling a basketball with daughter made it much worse.
12/15/16 - left Achilles pain
12/18/16 - left Achilles pain & left knee pain
12/20/16 - left thigh and calf... hurts to lift both arms up... right are more than left.
12/24/16 - left elbow joint pain
12/25/16 - left of spine under left shoulder blade pain.
12/29/16 - general fogginess, dizziness.
12/30/16 - workout bike 15m/3ish miles... thighs rocks and some bench press had to stop pain in shoulders... tried to run but bubble feeling in both calf - felt like going to trip from the cramping/weak feeling
1/3/17 - right hip joint locking up after sitting. Numbness in left arm most of the day.
1/5/17 - pain deep in right forearm... weakness too and pain in right hamstring.
1/7/17 - back of arms above elbow below triceps both arms pain.
1/8/17 - same as above
1/10/17 - same as above
1/11/17 - left and right leg pain and calf pain both legs.
1/12/17 - bone marrow biopsy – negative for leukemia and lymphoma. BMB showed I have ITP.
1/16/17 - gym 1.5m treadmill and 20 mins bike some cramping in calf – both legs.
1/17/17 - sore calfs like prior day.
1/18/17 - very sore and painful calfs and right arm elbow joint/Tendon pain... did bloodwork as the soreness and pain is considerable. CPK level was under 300.
1/23/17 - leg soreness/pain finally subsided or is minimal since 1/16, foggy dizzy feeling and tired despite 8h sleep.
1/25/17 - lower back and knees pain.
1/28/17 - both knees and backs of knees slight pain.
1/29/17 - right forearm pain/numbness.
1/30/17 - knees and right forearm and lower back some shaking in hands and legs.
2/1/17 - lots of twitching in thighs, shoulder.
2/3/17 - carpal like feeling in hands.. base toward thumb cramping
2/6/17 - trouble focusing, fatigue, right knee, back, right forearm. Numbness feeling right arm above elbow in bone?/middle of arm and some numbness in right hand fingertips. The pain in right thigh worsens when I flex it... coming from middle of thigh. Hand coordination a little off.
2/7/17 – pain in right ear – lasted 1 hour, Driving example of left forearm and below right calf.
2/8/17 – pain in left and right forearm, left is worst.
2/9/17 – pain/numbness in right shoulder, periodic pain in kneecaps when walking.
2/10/17 – noise in right ear - lasted about 2 minutes, right shoulder joint point.
2/13/17 – pain in web of left foot 6/10, pain in right foot too but not as bad
2/14/17 – pain in left foot
2/15/17 – (update – this was the last “good day”)
2/17/17 – in morning, pain behind left knee–tendon? In afternoon, pain moved to top of left shin
2/18/17 - coordination off, fatigue in both calfs/legs, sore-like throat feeling, swallowing different, tonue feels swollen and tingly, speech slightly affected. very tired, neck fatigue - hard to hold head up...
2/19/17 - both calves weak when I walk down stairs... "felt" them all day - sore and tight - left one more so. left knee mild pain. Lots of shaking when I flex arms but this has been going on for some time now.
2/20/17 & 2/21/17 – morning - weird feeling in right lower part of bicep/elbow – numbness in right fingertips of thumb and index finger. Nighttime - right hand Web weakness some pain coordination carpal? Thumb tip numb behind nail numb – right calf worse than left… tried to do a few pushups and stopped at 4… pain and fatigue in shoulders.
2/22/17 – calf soreness, lightheadedness – morning/noon, general fatigue.
2/23/17 – in Boston Medical Center for Rheumatology
2/24/17 – EEG/EMG Test in Boston Medical Center - Neurology
2/25/17 – severe vertigo, fatigue
2/26/17 – calf soreness, shoulder soreness
3/6/17 – light workout (because had a few good consecutive days) lasted 10 minutes – legs shaking severely after when going down stairs or doing anything strenuous.
3/7/17 – soreness in right hamstring and both calves.
3/8/17 – left leg/hip socket lock up from sitting on bleachers (similar to 12/4 and 1/3)
3/9/17 – had a quarter mile walk – pain in both legs and soreness. Pain in left kneecap and right top of shin bone. Aching, pain and numbness type feeling in right forearm. Was on phone in car for 20min and right arm hurt/ achy from holding phone to my ear for 20min.
3/10/17 – more misc pain in my right shin (more towards the top), light shoveling of driveway and at night pain in my right pectoral muscle – feels like a pull or a tear – very sensitive to touch.
3/12/17 - had to park far away from event – walked half mile – lots of pain and fatigue to the muscles next to my shins – both legs but right is worse – hurts to lift feet up and to drive when you have to left feet up – walked back to car after event and had to stop twice due to the fatigue and “hardness” feeling in the legs next to shin – was a 20 degree day.
3/13/17 – soreness and some pain in same shin area both legs – hurts to lift legs – going to do a lab today to check cpk, etc. also tinnitus and pain above wrist near right thumb – sharp aching/deep pain – feels like nerve.
3/14/17 – similar soreness and pain in same shin area both legs – hurts when I left my foot in the upper shin area
3/15/17 – similar soreness and pain in same shin area both legs – hurts when I left my foot in the upper shin area – also pain under right kneecap and pain above right knee in thigh – more surface whereas it is usually a deep pain
3/17/17 – knees buckling a few times – weakness and fatigue in calves.
3/18/17 – carpal like feeling in right hand and ache/numbness in right forearm
3/19/17 – lots of twitching and feeling of emg test in back of thigh/hamstring and other misc areas throughout the weekend.
3/20/17 – right calf extremely fatigued… sore and weak.
3/21/17 – constant soreness in my right calf for many days now w/no “good days” in between… only slightly sore in left one. Last good day was end of Feb/beginning of March…
3/22/17 – same calf issues – tinnitus in left ear.
3/23/17 – fasciculations continue and getting longer in duration and more frequent… in shoulders, biceps, triceps, thighs, etc.. hurts to lift feet in the muscle at top of shin
3/24/17 – carpal like feeling in right hand/wrist – writing impacted – wrist numbness – achy right calf per usual. Fasciculations in top of inner thigh – bubbling like feeling, almost like a feeling you’d get in your stomach.


*** - sporadic twitching (some extreme like emg test twitching) in following areas – neck, shoulders, groin, hamstring, quad, jaw, pectorals, calves, etc.

** - in general loss of flexibility, exercise intolerance, very active reflexes, tightness in tendons with a lot of cracking, popping, snapping when extending.
 
Your post is huge, you might want to take it down a bit to pertinent details :)

For ALS, the normal EMG is "out of the woods" yes and that is something to be very glad for, but you obviously have something else going on and need to keep seeking answers.

Not that it helps any, but a coworker has recently been challanged by no exercise tolerance and much pain, but negative for ALS, MS, and numerous other issues. He is still seeking answers too.

Best wishes to you and my advice would be find the best specialists you can to get this sorted out. Here, we are pretty much about ALS and other MND's. So if that's not you, we don't have much to offer.
 
Pain, pain, pain...... ALS does not present with pain. I can't count how many times or how many ways I was asked did I have any pain. Pain presents much later in this disease. A clean EMG. I've NEVER had one of those. There is something going on, I just don't see ALS. Enjoy the next 40 or 50 years.
Vincent
 
Adam, are you overweight and sit too much?

It would be irresponsible of me to venture any diagnosis at all, but I can say with confidence that you did not describe anything that would lead to ALS. You're clear.
 
Thank you all for your feedback.

To answer 1 of your questions, no, I am not overweight. I'm approximately 5'11" and 178 lbs. I do sit a lot at work as I have a desk job. What made you ask this? Do you have any leads for me?

Thanks again
 
Atsugi... any reason you asked about sitting and obesity? Any leads for me?
 
Hi, Adam.

Your list of symptoms gave me the impression of someone who spent years getting out of shape, and then spent the last few months working out too hard.

There didn't seem to be any ALS in there.

The one thing that is important would be profound, permanent weakness of a particular muscle--like a foot that no longer raises off the floor or a finger that won't help out with buttoning a shirt.

Many people say they have weakness, when more accurately, they "feel" weakness. Then, the next day, the muscle is better, but again gets to feeling exhausted. This is not ALS.

In my wife's case, she simply fell over. On looking, she realized that the foot muscle which should have kept her up--did not. No feeling associated with it. Just, try as she might, telling that muscle to move, it just didn't--ever again.

That would be bad. But I didn't read anything like that in your thread.

At one point you wrote, "Since then I've kept a lot but I fit into the category almost all of ALS symptoms." It sounds like there is a word missing in that sentence, but it seems like you're saying that you have "almost all the symptoms" of ALS. Then you wrote a bunch of stuff that didn't fit ALS at all.

It is quite common for people to say they have symptoms of ALS, because they saw a list. But there are nuances that only someone experienced with ALS would know.

Another thing. Most of the lists of symptoms I've seen--all of them, I think--are more accurately described as "things that ALS patients said they had." But having something doesn't mean it is caused by ALS. For instance, there is twitching; everybody's favorite symptom. But twitching happens in so many conditions, that it is diagnostic of nothing.

With a normal EMG and no actual permanent, profound weakness, you are clear, I'm certain, to look elsewhere for some other condition--it's just not ALS to me.
 
Rhabdo certainly can leave you with myopathy. I would see a physiatrist (rehab specialist) about building your muscles back up, gradually. PT is most likely the way.
 
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Thank you both -

To follow up on atsugi, what worries me is in my right hand for example - I went bowling last night and today when I told my phone in my right hand my middle finger and the one to the right of it are not "responding" well... very difficult with phone in right and with the fingers wrapping around to push the buttons... and I feel this weakness/ache/soreness that goes from my fingers to my forearm... To use your words, this is making things more difficult. Ergo why I'm thinking it is neuromuscular... believe me, I want to be wrong but it is not "feeling" weakness... it is definitely weakness/impacting my day to day... I have even adjusted the way I walk now to accommodate for the muscles to the right of my shins as they're strained/intolerant to exercise.

Again, thank you for bouncing ideas, etc - I just have 3 different doctors telling me 3 different things and going on 7 months now i'm starting to lose hope and am very depressed...
 
Tell me if I'm getting this right.

So your calves get weak quickly. Then you go to bed, and the next day starts out OK, but fairly soon your calves hurt again.

Also, certain fingers on your right hand don't work well, and the pain radiates up your arm. Usually, the next morning, it will start out better, but act up again by lunchtime.

Did I get that about right?
 
Atsugi... they never feel "ok" but yes, the more I use the worse they feel.. and coorindation issues too.

Karen - thx for the floxie info.. could u tell me if ur symptoms mirrored mine? My Drs don't acknowledge it saying it's a myth or not proven, etc... or ur symptoms showed up too late after taking cypro for it to be that, etc... so frustrating... from what I hear there's nothing that can be done about it anyway... says in time some recover, some don't...
 
your calves get weak quickly. Then you go to bed, and the next day starts out OK, but fairly soon your calves hurt again.

Also, certain fingers on your right hand don't work well, and the pain radiates up your arm. Usually, the next morning, it will start out better, but act up again by lunchtime.

Here's the deal. ALS destroys certain specific nerves in the brain and brain stem--motor nerves that tell the voluntary muscles when to contract. ALS starts on one nerve, then the next.

So typically a muscle in a hand will stop working, then the hand is unresponsive, and this effect spreads through your body as more and more of you gets paralyzed and no longer works.

But you don't have that at all. You have kind of the opposite, so you can put ALS out of your mind.
 
Adam, I rarely reply to this sub-Forum but... copy your posted medical log (nearly a daily diary from 10/1/16 to 3/24/17 and/or the entire original post), print it out and give it to the next doctor you see. I'd bet it will help him/her direct you to the doctor you may really need to see to help you with your so focused self concerns. Whatever it is... it certainly has not impaired your typing skills. :)
 
Thanks for the replies. I have provided my medical log to my doctors... I only started it on their advice. They haven't been able to diagnose me but through an MRI they're looking for an ideal spot for a muscle biopsy. That's the next step at this point. I appreciate the lady who shared her experience regarding "floxie" as that is a concern of mine. I had questions for her but her post was deleted... I'll send her a private message And see if it all matches up. Thanks again everyone for your opinions and assistance.
 
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