Theres a lot going on and I just need some support

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MTackett06

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Hey everyone.

I am new here, and I put that I am caring for someone with ALS but I'll be honest--thats not 100% true. I did help take care of my uncle who had ALS and he passed some years ago sadly. I wasn't sure what to put as to why I was here--we have no diagnosis yet but ALS is on the table the neuros say for me. Let me explain what has been going on lately to bring us there. I won't explain all my health issues but I do have an extensive history and all is being taken into consideration in regards to this.

So it started at the end of September 2020. Seemed to come out of nowhere. I would be walking and my left leg would just buckle beneath me and I would almost fall. I was a very active person prior to this. In October things amped up and muscle cramping in left leg started, flutters, spasms, cramps--my left leg started doing weird things. Then the numbness and tingling in the middle toes of both feet. Then I got COVID in November--affected me entirely neurologically. I was sick most of November. I also ended up in the hospital in January because of random unexplained fevers. Finally sent to Mayo clinic out of state to see Neuros there. Up until January 28th when I went to Mayo--my regular Neuro did limited MRI imaging with no contrast.

So when I see the docs at Mayo at end of January they look everything over and said my Neuro lacked in aggressive testing and they were gonna start the process of elimination. They also had me start a daily health journal to write down what seems to be progressing fast.

Also during this I was addressing my GERD I was told I have but found out with Manometry testing its actually Type 2 Stage 3 Achalasia and I'm having spasmodic episodes with my muscles that are causing swallowing issues and not allowing food to enter my stomach. So my new GI who specializes in these motility disorders put me on an antispasmodic.

Ever since getting back from Mayo things I was explaining to him then have all seemed to get worse.

I was diagnosed with clinical weakness on my left side at Mayo. It has spread up to my left arm--I have a hard time holding my phone, chopping carrots was one of the first really difficult things too. Just feel completely lacking in strength on left side. I drag my left leg most days and trip frequently. Neuro also said I have short term memory loss going on--more than the normal person. Hearing loss only on my left side.. phantom smells... constantly smelling something burning or rotting.. everything tastes off or bad.. last night popcorn smelled like rotting sour burnt hotdogs.. my husband's cologne smells like chemicals..

The Neuros at Mayo are calling it a complex neurological condition unknown at this point. The main things they said we are looking for are MS, ALS, and parkinsons. We have an MRI with contrast scheduled to finally see my entire spine correctly. Also an EMG scheduled of my left leg. Then if we are still wondering we are gonna do the lumbar puncture he said.

I also had 'hot flashes' in my left toes.. it felt like I was dipping my toes in a jacuzzi.. then the hot flashes started to move to the bottom of my foot, my heel, and my calf.. were almost up to my entire thigh with hot flashes now in left leg and foot.

My next appt and all this testing is going to be done on March 11th back at Mayo in Wisconsin. Because my Uncle had ALS and I've watched it take away someone slowly.. its really making these things happening with me hard to ignore...

I know that noone here is my doctor and only the docs are gonna be able to figure this out.

But I was hoping to have someone come here and just say they too went through this.. what was the outcome? Or their loved one presented this way etc.. for me its just not knowing that's bothering me so much.. while watching my body turn into one I dont recognize anymore.. I've never felt so physically limited in my life.. my left sided weakness is really becoming a problem..

So sorry for the length and thank you so much to those who get this far and listen to my venting!

Thanks all. God bless 💜
 

Nikki J

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Hi I fixed your interest. The appropriate one is learn about ALS. I hope that never has to change.

the emg will tell the tale. I am sorry they couldn’t do it on your initial visit.

if this all happened after covid I would say that was the reason. We have seen a lot of neuro issues post covid here and I have seen medical reports too. There are things that don’t sound at all like ALS- your sensory symptoms, hearing loss - but it is possible even likely you have 2 issues whatever caused your initial symptoms and also post covid syndrome.

how old are you? How old was your uncle? What is the status/ what happened to your relevant parent?
 

MTackett06

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Thank you for replying Nikki. Also thank you for changing the interest appropriately. The symptoms were present, concerning, and progressing pre-COVID. The Neuros at Mayo said they are seeing a lot of post Neuro complications as you said too--but both the Neuromuscular specialist and the other Neuro said they don't believe that's whats happening here and that may be because of my other health issues or my history that they reviewed. I'm not sure exactly. They just said that based on my physical examination and what I called small Olympics in his office 😅 of testing and trying to stand on my toes, push his hand away with my foot etc--I failed all of it. Definite left sided weakness.. so that's when he said we are testing for MS, ALS and Parkinsons. He did say that some things aren't typical presenting like you stated--it sounds like more than one thing. But only time and the EMG will tell for sure. I wish they would have done the EMG then but maybe he was wanting to see if things chilled out till my next appt? I have over a month span in between these visits so that was my thought. He wanted to see if and how it progressed. As for my uncle he was 50 something.. I wanna say 54? When he passed from Bulbar onset ALS.. it took him pretty fast 😔 we have a long history of autoimmune and neurological conditions on that side of the family. This uncles Dad my grandpa had MS and was in a wheelchair and his brother had Lupus. My moms side of the family has a lot of complex conditions. Oh and I am just shy of 31. But my health record would make you think otherwise 😅 I've been called a rare bird, an anomaly, and a zebra among horses.. my health care has never been easy for me. I have been through more medically than most anyone my age. I know that doesn't mean I for sure have anything--just saying--thats why I've been sent to Mayo because nothing is ever easy or normal with my health. I seem to always have that rare condition or reaction etc.. counting down till my next appt and praying that these symptoms will calm down some. My husband seems more anxious watching things progress this way.. okay sorry for how long this got! I just have had a lot in my history I guess.
 

Nikki J

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I hope you get clarity on your next visit. If you have pre existing conditions on top of whatever started last fall and then layered post covid syndrome on top it will be, as you said, complicated. All I can say is let your Mayo doctors ( who are clearly taking this seriously) work through this. It is hard to be in limbo land.

you might ask to see a neurogeneticist If a diagnosis doesn’t emerge quickly or even if it does

good luck. Let us know what happens
 

Bestfriends14

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Hi there,

I am so sorry to hear of your continuing issues and I do hope that you can get an EMG as quickly as possible. The weakness is a definite concern, however, it does sound like you have more than one thing going on, possibly. Also, and this is very important, if you are tripping and falling, you want to minimize the risk of injury ASAP. If you fall and hurt yourself, you could hasten whatever is going on, making you in a far worse position than you are currently in. Do you walk with a mobility aid such as a cane or walking sticks? If not, you may want to look into purchasing some for your own safety.

Please keep us posted as to how the next neuro appointment goes.

Good luck.
 

MTackett06

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Hello again!

I just wanted to say thank you so much for your responses, your support, and your advice. I had to wait a few days to post a reply as I am not an upgraded member yet. I will be sure to come back and update again after I see the Neuros at Mayo on March 11th and we do the testing we have scheduled. I am hoping and praying that you and your families are both well.

Talk soon friends. 💜
 

MTackett06

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Learn about ALS
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Hello again,

I wanted to update after my Mayo clinic visit and testing. I am very grateful to God for giving me these docs who are determined to figure out what is going on with me. I am also grateful for some good results to share--my EMG was normal as far as any ALS is concerned-- so I don't have to worry that it's that--Glory to God!

I am going back for more testing to get a definitive diagnosis but we are about 90% sure I have Small fiber nerve neuropathy--one of the peripheral neuropathies--and its causing autonomic failure and complications so it may be switched to Autonomic Neuropathy at a later date after testing.

I was also chosen by Mayo for genetic testing--I have a known genetic abnormality and this condition can be caused by another genetic abnormality so they believe that could be the cause of this condition--if nothing else I also have Lupus and Sjogrens (AAA syndrome) so they are gonna link it back to that as cause if I don't have the genetic mutation.

I'll be heading to Rochester Mayo hospital in April for the confirmation.

I just wanted to update you all, and provide some hope to those who are in the waiting and wondering.

I can't thank you both enough for your support, suggestions, and responses when I needed someone to just listen--truly it means so much to me.

Praying for all those who find themselves here and needing support for either their self or their family--I am sending lots of love and big hugs 🤗

Not sure if I should just log off here and not update any further? I completely understand if that is what the administration of this group would prefer. Please let me know 😊 if it's possible I'll come back to update after my next testing

Lots of love from a friend 💜
 
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Nikki J

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Thank you for letting us know. I have been thinking of you and wondering.

I am so happy to hear your news! I wish they could have completed all your tests this time but ruling out ALS and having a provisional diagnosis is great.

Do please return and let us know what the definite answer is. It is very helpful to others and we would like to know too

good luck and thanks again for the update
 

MTackett06

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Learn about ALS
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Thank you Nikki 😊 I will definitely come back to update then!

I too wish we could have done everything in this visit and we definitely tried--but they didn't have any openings at either hospital.

April 12th and 13th are my testing days and I believe will provide what we're looking for.

I'll be back to update after that date and possibly after March 26th--I have a lumbar scheduled then as well. But that is a short visit and not the longer stay in Rochester.

Sending lots of love till we chat again 🤗
 

Bestfriends14

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That's fantastic news! As to what is going on, I hope you find out soon for peace of mind. Yes, please do update.

Take care.
 

wmilo

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Very happy that you don't have ALS! And that you can put a name to what is affecting you. I hope you will have treatments available to lessen your symptoms.
Take care.
 
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