Old 11-03-2015, 04:31 PM #1 (permalink)
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Default Insight appreciated

Hi all. Up front thank you to everyone who may read this and reply - I do so appreciate your feedback.

I am historically a very active 37 year old female. - walk everyday, long hikes on weekends (18 plus miles with camping gear), snowshoeing, biking, horseback riding, even for career I am in woods 50% of time doing physical work, etc. In fact I had to do a test for work beginning of July where you carry 45 lbs and walk 3 miles in less than 45 minutes. I beat kids who I have 30 years.......and I had a torn rotator cuff at time.


Prior to 7/13/15 - Numbness in leg with crawling sensation (for many years on and off) also gets really itchy, three fingers on left hand froze up beginning of July, tingling across back occasionally when I bend head down (dishes, tying shoes etc) started in June, wake up with numb hands/fingers started in June too.

7/13 - Had shoulder rotator cuff surgery. Came out of surgery and a week later noticed a "weakness" in right leg. Recovered from surgery like a rock star,off pain meds in three days post surgery (just ice and advil as needed), sleeping through the night, able to do most chores on handed a week post surgery, showering and dressing myself one week post surgery, back to work two weeks post surgery, was doing my usual weekday 4+ mile (one hour) morning walks by 7/21........but something was off.

8/3 - realized I could not lift my right foot off ground. Called primary doctor who I was scheduled with for post surgery appt on 8/4

8/4 She said I had foot drop probably due to back issue and I was scheduled to have MRI on 8/5 then appt with neurosurgeon 8/7.

8/7 Neurosurgeon appt - MRI fine so they suspect peroneal nerve damage done during surgery.

8/10 I started to get a very slight heavy feeling in thigh of left leg. Heel would scuff when walking (no longer does this) . The heaviness/weakness is progressing and now I have some pretty severe pain associated with it when I walk or stand for long periods. Pain can be stabbing or aching. Also have sensation of something crawling across top of thigh. It feels heavier and heavier. Noticed this quad muscle does not "engage" without me willing it to. If I look at both legs when standing the right quad muscle is doing something to help me stand but left one is not. Noticed this in dressing room one day trying shorts on.

Left hand also started to have some severe pain - stabbing, cramping in muscles and joints. Mostly when I am using it like holding book etc or after I do work like gardening etc..... Similar pain and some stiffness is also occasionally in my left arm.

I noticed muscle twitching in both calves on or about 8/10 as well . Primary suggests Magnesium which has not helped. Twitches pretty much stayed in calves for a while now has progressed to all over my body - calves, feet, shins, thighs, back, arms, hands, face.....

8/14 Diagnosed after EMG and NCS on right leg as foot drop caused by damaged peroneal nerve.

Initially this muscle would not even move with all my will......but this is improving and muscle is working, I can now walk a bit on heel, foot is almost flexing at same angle as left foot, can lift big toe and strength is on the rise.

8/21 - Go see shoulder surgeon and he is thrilled with shoulder. But I start to explain other symptoms and he refers me to neurologist.

Also noticed a few weeks prior to this frequency and urgency of urination increased - today burning and blood in urine. Go to walk in clinic and get that confirmed and treated.

8/25 - Notice I am catching my feet on things, bumping into bottom of cabinets when I wash dishes, catch toe on desk leg etc. Like they don't know where they are. Spatial awareness is off.

Meanwhile I have - mostly at night and not always - burning in feet and tingling in hands and feet. My feet have gone numb once or twice. Left shin muscle has had a three day period where it was numb.

9/4 - Neurologist gave me normal neuro exam. She saw muscles twitching and said it was probably BFS. Schedules me for EMG NCS. Ordered the massive blood tests to rule out Lyme, arsenic poisoning, B12 deficiency etc......

I go home and the heaviness in left leg is progressing. Now pain too which is not just when I am done using leg but also while I use leg. And muscles feel stiff too. Notice I am catching my hand on things now, overreaching, Spatial awareness is off in hands now.

Left foot on interior side has a two day period of numbness.

10/5 - EMG clean other than muscle affected by peroneal injury. NCS normal. This Neurologist said I need to walk less (this made me crazy as I did not just start a new activity or increase an activity, I know when I pull a muscle. have soreness beacues I hiked 10 miles or need to back off due to injury. This is not age related unless I have aged significantly in less than 4 months) and come see her in 6 months. She orders a brain MRI.

About this time i start having issues with feeling like I need to clear my throat. Well to be more specific like when you have a cold and can't get the phlegm up.

10/8 - MRI results - have some nonspecific lesions as well as one lesion on calloloseptal interface suggestive of MS. Radiologist suggested spinal tap. Neurologist says non conclusive for anything.

At this point I know there is something wrong and it is progressing so I - on a whim - call the Mayo Clinic in Rochester and they can get me in 10/21. I go hoping for answers. Meanwhile.......

10/16 - Follow up about foot drop with Neurosurgeon. He notices I have bilateral hyperreflexia in legs. He also says he sees fasciulations on my tongue. He mentions ALS. Now I am really concerned and he looks concerned too. He is glad I am headed to Mayo.

10/21 - 10/26 At Mayo Clinic - Neuro Evaluation, blood tests, EMG, NCS, Sensory Evoked Potential, Swallow Studies, Physical Evaluation, Cervical MRI. This neurologist sees no fasciculations anywhere including tongue (although my muscles are jumping like crazy and everyone I know has seen them do this), I am still hyperreflexive in both knees. All studies come back normal except EMG of muscle associated with right foot drop which is resolving so she attributes to initial diagnosis of peroneal nerve injury across fibular head. Physiology doctor notices my leg muscles are overtoned and suggests more stretching (BTW I have ALWAYS had very toned legs). So I am sent home saying there is nothing clinically significant to make a neurological diagnosis. Follow up with internal medicine specialist and a thoracic MRI.

Come home 8/27 frustrated and feeling like I am going crazy.

Muscle twitches continue to spread - stomach, back, ribs, face, shoulders, butt. Some times/days worse than others. Some days it is really specific to one muscle other days all over the place. Tried Gabipentin (sp?) and cannot function on even one pill it makes me so groggy. Also all it seemed to do was make twitches turn into buzzing.

On Sunday my left toes froze and I could not bend it for about 3 minutes. I am starting to get weird feelings in the muscle above my left eye on on the left side of my face. Kind of a pressure feeling. Have this feeling on top of left foot on and off too since September, like someone is pressing a finger on it.

I have lost 20 lbs since July (and I am not trying to, I have even started to eat bread and sugar to gain weight and I can't. Haven't eaten bread or sugar in years - I do not generally have a problem gaining weight).

Some days I feel better than others and mornings are generally the best. I still get up and walk at least 4 days a week, can still hop up and down on each leg, squat and get back up, do one legged yoga poses plus my normal yoga routine, walk on toes, heels etc. No Clinical weakness can be detected by any doctor I keep scoring 5's........BUT I know my body and there is a weakness/heaviness on my left leg that is getting worse. The pain is getting worse and more persistent in leg. My leg is like jello sometimes. Still have pain in left hand.

All I am getting are doctors who tell me to "toughen up". I am by far one of the toughest people they have probably ever met. I am NOT A HYPOCHONDRIAC, I DO NOT WANT A DISEASE, I want to be able to function like I did 4 months ago or at least have someone tell me what is going on with my health.

The doctors are not saying "I appreciate you are having issues, let me talk to a colleague" or "I believe you do have something wrong and we will figure this out". I even searched out a new primary in hopes of having someone on my team. She told me I look fine to her but she would refer me to a neurologist in her group (which I have an appt with 12/5 - just hoping for someone to have some answers or at least help me find them).

Just because they cannot detect anything they think is significant does not mean I am making these health issues up. I keep getting told to just go on with my life - Well that is what I am doing - walking dogs in mornings, hiking on weekends, riding the horses, doing chores (heavy duty ranch chores), going to work, making dinner etc etc etc. Problem is I am reminded every second that there is something wrong - either twitching, pain, heaviness, weird sensations in body, inability to gain weight, tingling, numbness in hands and legs when I wake up - I just want everything to go back like it was 4 month ago. I have a stand up desk at work for my "desk side" of job. I haven't sat at a desk in 4 years and now all I can do is sit at the desk or I am in pain.

Sorry for all this ranting. I am so at a loss. I am a doer, a fixer, a go getter. My nickname is the energizer bunny. Apart from my work and personal life I started and ran an animal welfare organization in my county. The people who know me know there is something wrong and it has all come about in 4 months. I am terrified.

Thanks for listening. I am not sure what I hoped to get by posing here but figured that at least one "ologist" mentioned ALS so maybe this is a start .......

Any thoughts or insight is appreciated. I am not looking to have this disease, but if I have it I want to know sooner rather than later for my sake and my family's. All my best

~OG
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Old 11-03-2015, 04:48 PM #2 (permalink)
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Default Re: Insight appreciated

OG, thanks for the details. This will take awhile.

OK. Whew!

I can see where you are concerned. There's a lot going on. In fact, too much. You mentioned a lot of sensory stuff, feelings, numbness, even spatial problems.
Also, some of your weakness improved. In regards to ALS, I say nah, something else is going on.

You have several EMGs that did not find ALS. That's pretty good. I'd go with that. Then there are all the 5's on the strength tests.

And I noticed that ever since you came back from Mayo, you reported a whole lot of anxiety symptoms, all the way up to losing weight. That's serious.

It's too bad one of your ologists mentioned ALS, because, of course, that has frightened you terribly. Possibly that's what's causing the anxiety.

So I'm not a doctor, and I can't diagnose you or pretend to guess what direction you should go. But I do know ALS fairly well, and you didn't describe it.

Good luck on your health investigations. But don't worry about ALS.

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Old 11-03-2015, 04:58 PM #3 (permalink)
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Default Re: Insight appreciated

Yikes I'm 47. Sorry I just really don't feel 47 I guess.......

OG
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Old 11-03-2015, 05:25 PM #4 (permalink)
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Default Re: Insight appreciated

Atsugi - Thanks Bunches for the reply!

Clarification, the weight loss was way before going to Mayo. In fact it happened in about one month between July and August. I have gained some back but mostly in my mid section (unfortunately a high carb diet will do that - but I'm afraid to go back to my no carb diet for fear of my ribs sticking out again). My skinny legs just won't come back to the shape they were in before......my knees don't even touch anymore. I have always had "skinny" legs but this is ridiculous!

I will try not to worry, I can see why some people are here even after being told by a doctor that there is nothing wrong though. You start grasping at straws for an answer, any answer. And this is as close as I have come to anything.

The doctor at the Mayo did say she cannot rule out the beginning of a MND but at this time there are no clinical findings. Looks like I left that statement out. Anyway. Anyone else who has insight I'd love to hear it.

OG
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Old 11-03-2015, 05:51 PM #5 (permalink)
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Default Re: Insight appreciated

"doctor at the Mayo did say she cannot rule out the beginning of a MND but at this time there are no clinical findings."

I think I understand that statement, because my wife was a doctor for 20 years.
Just for a little perspective: My doctor can't rule out homicidal sociopathy, but at this time there are no clinical findings.
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Old 11-03-2015, 08:19 PM #6 (permalink)
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Default Re: Insight appreciated

OR Girl, complex neuropathy-like sx are not that uncommon following joint surgery, or any surgery. It can be anything to direct nerve damage to pressure palsies.

Your EMG @ Mayo + related studies were clean while pointing to post-surg sequelae. With all the sx you report, it's hard to believe that MND will pop up de novo in the future.

I would totally stop worrying about weight, unless you are starving. Eat what you crave and you will probably gain some. But I would get to a bodywork studio, rehab practice, neuro-focused massage/physical therapist and re-focus on your body as a whole, formerly more-integrated unit that is clearly out of whack.

Only after you get as "aligned" (not in the chiro sense, of course) will you have more clarity on what, if anything is going on systematically.

I realize you're already very active, but bouncing around on a horse, for example, and hiking slopes, could be aggravating some of the possible issues you have. I would commit to static/gradual stretching/holds-type exercise for a while, less ballistic stuff, and try to keep joints, limbs and appendages out of odd angles.

As Mike says, I wouldn't fret about ALS, and I'm not sure I'd fret about "the answer" right now, though I completely understand why you do. I have no doubt that a P&RM doc, MT, PT or other bodywork professional can find some things "wrong" to work on, and things often uncoil in a more understandable direction from there.

Hope this helps.

Best,
Laurie
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