Reason for concern? Puzzled.

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Bnrangus

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I am thankful to come across a website like this and please know that my heart deeply goes out to those of you on here that are struggling in ways that I cannot even imagine. I have not read much here and I trust I am not violating anything by sharing my story and asking questions. I have had many tests done over the past year and a half and really have no answers.

Today I had an appointment with a highly recommended Internal Medicine doctor (that a friend of mine insisted I see). I was shocked when he shared (multiple times) that I may potentially be dealing with very early symptoms of ALS. It was the very first thing he mentioned after going over my history. I remember back in 2018 I felt like it was what I had, but felt like they had ruled that out. I personally don’t feel he’s right to suggest this as a possibility now, but thought I’d get feedback here. He suggested I go to the Cleveland Clinic for further testing. Really has me puzzled as to the ALS concern.

All that being said, I thought I would share with you my symptoms and the timeline. I’ve included everything I’ve experienced with my family doctors (had 2 now) and neurologist (seen 3 now). I realize it’s too much info, but thought I’d go ahead and put it all out there, Lol.

I’d appreciate what those of you on here think and any feedback you may have. THANK YOU AGAIN FOR TAKING THE TIME TO DO THIS.

I am 44 years old. Oct. -Dec. 2018 – Was highly stressful time – was in process of moving to new city, trying to sell house, adjust to new job, emotionally hard to move for our whole family.

November 2018
  • Before I ever had any other symptoms - one night while watching movie with family I had major pins and needles sensation all over my head and neck! Almost went to ER. Lasted about 20 minutes??
  • Started having muscles twitching at random places all over my body – started waking me up in the middle of the night.
  • Right leg started feeling weak/tired – like I had just run a couple miles – I could still use it and had strength still but it just felt exhausted.
  • Shortly after my right arm started feeling same way as leg, but not as bad as leg.
  • My family doctor prescribed meloxicam and muscle relaxer and mild anxiety pill.
  • Toward end of month I started having trouble swallowing – had to take super long to chew my food to get it to go down. Had to force myself to eat.
December 2018
  • Admitted to hospital for four days for not being able to swallow, along with my other symptoms.
  • Swallow test showed partial paralysis of esophagus
  • Esophagus was dilated – and able to swallow again
  • Discovered hiatal hernia – prescribed Protonix
  • Twitching was considered by the neurologist as Benign Muscle Fasciculations – he did not feel this was in any way connected to my throat.
  • EMG (done later in month) showed no abnormalities in in my right leg
Mid-December 2018 / January 2019
  • Still had strong muscle twitching throughout my body
  • Followed up with family doctor – due to leg/arm still feeling tired and worn out
  • Blood test revealed extremely low in vitamin D (almost 0)
  • After 3-4 weeks of vitamin D supplements things were good in leg/arm
  • Still had muscle twitching, but not as bad and could sleep through them.
2019

July 28
– Went to ER for numb tingling sensation on head and face – did head scan - everything checked out ok – they said it was more than likely a panic attack. For the most part I have never dealt with depression or anxiety (other than what had happened to me in 2018).



August – started having discomfort in my testicle

Aug 26 – ultrasound of testicle

Sept. 6 – Saw urologist – confirmed a bad case of Epididymitis

  • Prescribed me Bactrim
  • 17th - Started having stomach and chest pain and depressive thoughts - went to ER and everything checked out OK – was told to keep taking Bactrim!
  • On 19th I broke out in hives/rash all over my chest and legs – stopped taking Batricm!
  • Sept 26 – MRI pelvis for urology
October 2019

  • Early/mid October started having balance issues – often times in morning
  • By late October started having vertigo semi-frequently (I was diagnosed with Meniere’s disease back in 2016).
  • Nov 21 – New ENT doctor wanted MRI of head to double check for Meniere’s


November 26th Started exercising some – walking 2-3 miles on treadmill for maybe just 2 or 3 days. Nothing strenuous.

December 2019

  • Dec. 3rd – had a major stomach bug (don’t know if had fever) – threw up 7x’s in 14 hours.
  • Didn’t exercise for several days – maybe a week – I knew I was dehydrated – and tried to rest and load up on Gatorade.
  • Dec. 12/13 – felt I strained/pulled muscle in my right calf – felt like charley horse. I took ibuprofen and iced it over weekend, but I was up on my feet a lot on Sunday (15th), as I had to preach morning and evening.
  • Leg still had nagging dull ache to it – so I took muscle relaxer and meloxicam – for approximately 4-5 days (16th-20th).
  • Leg started feeling weak/tired again (just like 2018) and sometimes felt numb/asleep. I seemed to notice it more with shoes – so I switched back to my old shoes.
  • I’m flat footed – and wondered if my lack of arch support was causing me the problem – went to Wal-mart and purchased Dr. Shoals custom arches to see if that would help.
  • By end of month my upper right leg felt weak too – just felt like I had run a couple miles. Had difficulty going up stairs.
January 2020

  • Muscles twitching waking me up again at night
  • Leg continues to feel tired/weak -feels numb a lot – notice more wearing shoes
  • First weekend – joint in right shoulder ached slightly and then notice forearm frequently felt tired, like I had worked out with weights
  • Sunday night of the 5th – arm felt really tired and has somewhat continued to feel that way – especially my forearm
  • Sunday the 5th – my mouth started feeling super dry. No matter how much I drink it just feels dry – my throat starts getting raspy some when I talk. My mouth continues to feel dry and parched most of the time.
  • On 9th – went to ER with sharp pressing chest pains on left side. Everything checked out OK and they scheduled a stress test for 15th.
  • 10th – followed up with my family doctor and she ordered leg and arm x-ray and blood work – all came back good.
  • On 15th – had nuclear stress test at 7AM – during test, my right leg from just above the knee down to my whole right foot went numb and just felt somewhat heavy afterward. My right hand and forearm felt weak and I had hard time using my knife later at lunch to cut food. Got home and hand felt cold to touch – I asked my daughter to grab my hands and asked her what she thought (I didn’t tell her anything) – she said my right hand was quite cold compared to the left. I called my family doctor to ask her opinion – she consulted with another doctor and they both recommended I go to ER and have them do a workup.
  • ER did CT SCAN of Head – recommended I see neurologist for follow up.

Fast forward to where I am now.

I am continuing to have difficulty with my right leg exhausted – and tired. I can still use it – there is no sign of muscle atrophy or leg drop. I did have another endoscopy and they dilated my esophagus again.

Over the past 2-3 months, have had dull ache in lower back and mid back. I notice it after I drive a long period of time or sit still for quite awhile. It’s only the moment I get up that I feel pain, and then I don’t really notice any pain at all. Stretching seems to help.

All my blood-work has come back good (every time). Vitamin D and Magnesium good. Triglycerides very high. I have had MRI of brain again, EMG and MRI of cervical and lumbar spine. All have been totally unremarkable, other than last brain scan noted “mild cerebral atrophy.” There is no evidence of disc issues in my back.
I have been told they ruled out MS, rheumatoid, neuropathy and spinal issues. My neurologist has now recommend I have physical therapy. She has prescribed me gabapentin, but not sure that it made any difference other than helping me sleep.
 

KarenNWendyn

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Please read this if you have not already done so

Nothing in your story suggests ALS. Pins and needles are sensory symptoms, not motor. And feeling week is not the same as clinical weakness noted by a physician. It’s hard to say what’s going on, but it’s not ALS.
 

lgelb

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Sorry you are going through this. Couple of questions --
What meds are you taking daily or sometimes?
How high are the trigs?
What about other lipids? What is current vitamin D level?
Do you smoke/are you obese?
What did the last CT (in ER) show?
Was the hernia ever treated besides putting you on Protonix? When was it last imaged?
What diagnosis does the neuro that is sending you to PT offer (something has to be written on the rx)?

I agree that this doesn't seem like ALS, so going to Cleveland to rule it out seems less than a plan. Still, they have some good diagnosticians there so I would see if you can either do one of their telemedicine consults where they get your records in advance, or if you need to go there, I'd see the "in search of a dx" service in internal medicine, not neurology.

Best,
Laurie
 

Bnrangus

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Thanks Laurie.
  • Medications are lisinopril/hydrochlorothiazide for blood pressure, allergy pill and gabapentin.
  • Trigs originally were over 1,000 and now 500's.
  • Not overweight and I don't smoke and in decent shape.
  • I've had a mri on lower spine since ER visit - and all have been unremarkable.
  • Hernia was mild, when he did endoscopy this past month he said all looked good.
  • I do not remember what the order was for physical therapy.
You mentioned trying to see an internal medicine doctor. That's who I just saw, who suggested his concerns about possible very early ALS and recommended I go to Cleveland Clinic. This was the first time any doctor has brought this up, and had me quite puzzled. When I questioned him on it, he felt my right leg wearing out so quickly after walking/and going up stairs, especially since the xrays/MRI/CT scans revealed nothing. He also noted the issues with my back over the past few months was also concerning - that even though MRI was clear, and while I usually have no pain, how its painful initially when I move and then goes away.

Anyway . . . to me what he said just didn't seem right, but didn't know if I was missing something. The appointment with him was just yesterday and it was the first time i had seen him. Figured I'd just throw it out here to get feedback. I appreciate you taking the time to answer back. Thank you.
 

EricInLA

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I agree with others that this sequence of symptoms does not sound like ALS. But the real fact pointing away from ALS is that, if I understand it correctly, you had a clean EMG in Dec. 2018 in your symptomatic region, and then another clean EMG just recently ("last 2-3 months"). If that's the case, it's extremely unlikely to be ALS. EMGs are the gold standard in diagnosing this disease.
 

lgelb

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Yes, that's what I meant -- a better internist. How an internist could jump from clean EMGs and your history to ALS is somewhat baffling. But at an academic med center, with consultants more available if/as needed, I think you could get closer to an actual overarching dx if there is one to be had.
 
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