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Myrtle

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Hello all,
Let me tell you my whole story...

I started having pain(muscle ache) in my shoulder March first. Went to a redicare Dr on March 11th and let the Dr know the muscle pain is also in my arm as well as shoulder and moving around. Was told this was myalagia and to follow up with primary if it persisted. I followed up with primary on March 21st and informed him the body pain is moving around to both legs, arms, and back. Was told these were myalagia and to come back in 6 to 8 weeks if it persisted.


I came back to the dr on April 21st to let him know the pain is still there but now I also have fatigue. At that point a CBC blood test was ordered. Within a week of the blood test my aches started to stop but started to become musclr weakness and sudden muscle loss and seem to come on suddenly..neck, arms, forearms and legs. Along with this muscle loss I had pain in my upper left rib cage that was also in my back... Usuauy inflamed most when eating.


On April 28th got my blood test back and my liver enzymes were slightly elevated...alt 93 and ast 63. Also ferritin was 437. Also when I went into the appt I was down from 288 pounds to 280 pounds without trying from March 21st to April 21st. Also I was starting to have large greasey stools and they were frequent.At this point I did some research and was scared I had pancreatic cancer.


My Dr expressed to me that they believed all my issues we're related to anxiety and persribed me anxiety pills. The next day may 1st I got in wtih a gastroenterologist and showed him my results and symptoms. My gastroenterologist ordered an ultrasound and I was able to get my test done within the week. I got my ultrasound results and it showed I had a fatty liver and that there was a spot that wasn't seen well on the ultrasound but other than that they didn't see any lesions.


Due to my physical symptoms I followed up with gastroenterologist and he said no pancreatic cancer due to ultrasound and put me on a fat free diet for my liver. I followed his instructions and have been on the fat free diet. I followed up with my normal Dr May 15 and was down to 275 pounds and explained the muscle loss is continuing and am still extremely scared I have pancreatic cancer and would like a CT scan.


I was denied the scan so I scheduled an executive physical to try to figure out what was going on with me which was may 22. At this physical I had more blood tests, bone density test, stress test, cardiac testing, lung scan, dermatologist review. At this appointment the only new thing found was a small spot in lung that they weren't worried about and also that my testosterone is low at 243. He also said I should get a CT scan to make sure I don't have pancreatic cancer but my primary needs to schedule it. Also at this appointment I was now down to 271 pounds.


I followed up with my Dr on May 28th. I let him know that the Dr from executive physical said I should get a CT scan and I asked if he reviewed my resulta from executive physical but he couldn't locate them but said he would get them, review them and get back with me. Fortunately for me he did schedule a CT scan but told me if I didn't have pancreatic cancer we would get me into rheumatologist.


I was fortunate to get in quickly for the CT scan bl and got my results back on june 1st in my online portal. The only thing I read was that I had 2 uncomplicated hernias and a little sparring on my gallbladder but nothing wrong with my pancreas which was a relief but still my muscle wasting hasn't been addressed.


I waited till June 5th and called my Dr office and wanted to schedule a follow up to review my ultrasound. Was told the first time i could get in was june 28th. During this waiting period my symptoms started to change and started having swallowing issues and started to get twitching throughout body mostly prevelent at night.


I left a message for my Dr on the 12th to let him know that maybe I should get into a neurologist because of my new symptoms. I didn't receive a call back so I went into the office on the 15th to follow up in person but was told be the drs assistant that I could either try to be a walk in patient at Mayo or take a rheumatologist referral. I elected for rheumatologist referral but I have still yet to get that referral.


After that appointment I tried to contact Mayo and was denied an appointment. At this point my next follow up was with my gastroenterologist on June 18th and I let him know that about new symptoms and he scheduled me a esophogram test which got scheduled for June 21st. At this appointment I was now down to 262 pounds.


While I am on a diet the weight and muscle is coming off at a crazy rate. The following day my swallowing became an issue that it caused me to have to go to the Er because I threw up 4 times due to trying to clear my throat. The Er basically told me that I need to get my esophogus tested and sent me home.


I just now am sitting in the parking lot after my test feeling lost because I'm falling apart at a fast rate and I am afraid I have als and can't get into a neurologist. I have tried to schedule an appointment myself and can't due to my insurance which requires a referral which my normal Dr wont give me. So I now have to wait a week until I follow up with my primary and hope that I can convince him to let me see a neurologist....

Has anyone else had this struggle before? I feel like I'm falling apart at an extreme rate and don't know what to do. I have lost muscle strength and mass in hands,calves, forearms, back, and neck. They all seem to be progressing together.

If anyone has advice please let me know
 
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Atsugi

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Michiganese doesn't use paragraphs?

Nobody can read that.
 

Bestfriends14

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Hi there,

For the forum members who use eye gaze, could you please go back and break your block of text into paragraphs? This just makes it easier for those using eye gaze to read what you are trying to ask.

As for what you have written, I see nothing that resembles how ALS starts. ALS starts in one area, typically, and moves piece by piece from there. If you are having trouble getting a neuro referral, it could be that your current GP sees no reason to send you to one.

Other than ALS info (as that is all this forum is for), I have no advice to offer to offer you except to keep working with your doc, continue taking your anxiety meds, and change your diet to a more healthy one, whilst increasing your water intake.

Good luck to you and best in your diagnostic journey.

Take good care
 

ShiftKicker

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Mod note: Edited into paragraphs. People can't edit their own stuff after a certain time period.

Myrtle, please be aware that people can't help you if you provide a wall of text with no breaks for when you are posting anything further. It's hard to read and can be burdensome to scroll through or find your place in.

I don't see much need to provide further info, as those above have given you great advice and your issues seem to be digestive in nature. ALS and large greasy stools are not a known symptom combo.

You have 7 days till your gastro appointment to discuss your results and plan your next steps. It may seem like forever to you, but that is very soon. This forum is not the place for you though, as your symptom pattern does not show ALS.
 

Myrtle

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Thank you very much for your responses.
 

Myrtle

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I just want to make sure I understand this correctly. If muscle atrophy and weakness in my legs and in my arms started during the same week more than likely this isn't als? Everything with me has happened so fast it's hard to tell but within 4 month period I have gone from being perfectly healthy to weakness and atrophy in all limbs and my back and I recently added swallowing and twitching issues in the last 2 weeks?

If that is the case I will stop panicking. My wife is due with our 4th child within the next month and that would decrease my anxiety a ton.
 

Nikki J

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ALS starts in one place and spreads and not in a week - even the most malignant form. If you had a very aggressive case you would have lost function and it would be immediately obvious to any doctor but even then no not in a week

Good luck and enjoy the family
 

Myrtle

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Thank you very much you have been very helpful
 

Myrtle

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Thanks for your patience with me as I have a few more questions..
My whole problem started with muscle pain that was aches and moved around body for 2 months.
Then then the very first muscle loss I noticed was in my neck and it was a decent amount in a couple day period? Could that be a sign on bulbar onset?

Within the week stared noticing slight arm wasting and weakness in both arms and forearms. Then within the next few days noticed leg weakness/calf muss loss.
All of this was happening on both sides.

Now it's 6 weeks later I'm having twitching and swallowing issues. What could this be other than als? Everything I look at online matches also almost exactly other than the pace of onset.

Also on biomarkers I have a couple questions..
I have read that low testosterone and high ferritin are markers and I have both of those. Buy I also have low ck levels and high uric acid which point in other direction. Are any blood markers more reliable than others?
 

Nikki J

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There are no blood tests that are reliable biomarkers for ALS. The gazillion blood tests we get are looking for other possible causes of our signs and symptoms.

Nothing you have said makes us think you have ALS.

Please see your pcp. If you get a diagnosis of anything please report back. If you see a neurologist and they say they have findings suspicious for ALS you may report those. Otherwise please stop.
 

Myrtle

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Also Im at the point I can't do anything without being in pain. Walking hurts, kids sitting on lap hurts thighs, picking anything up hurts hands and forearms... I'm just confused if not als what else could take over my body like this
 

Bestfriends14

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ALS does not start out with the pain you describe. Absolutely nothing, not one single thing you have described, sounds like onset of ALS.

As Nikki says, please continue to work with your pcp, and after, only after, a full medical evaluation and finding, report back. Until then, enjoy life to the best of your ability.

Take care
 

Myrtle

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I have now met with my new doctor and he has an MRI scheduled for me on 7/11 and said it will probably be two months before we can get in with the Neurologist. My new Dr also informed me that there is no need to see the Rheumatologist since all of my blood tests came back good.

Did anyone have numbness early on in the process? I have been experiencing numbness along my nose during the day and at night my hands go numb and finger stiff? Also my twitching is pretty much all over now.. including scalp and eyes. Does the twitching progression start like this?


I know you have all said this doesn't sound like ALS but I have been trying to look for something else it could be and everything leads me back to ALS. Muscle loss, muscle weakness, twitching, swallowing issues, If this isn't ALS does anyone have a different direction to point me in?

Appreciate the patience and the advice
 

ShiftKicker

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Have a look at this post: https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html

It lists a whole variety of symptoms that point away from ALS. You have posted many of these. If you read to the end, it does provide a list of differentials. This forum really does focus on ALS and those who suffer from it. It is very easy to turn it into a general health inquiry forum, given the knowledge of the members on their generosity with time. Facial numbness is not a sign of ALS.
 
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