Is this ALS

[Bonnie828]

This is my first post here, I am a 43 year old mom of 7 so I'm sure like most I can't help but think this can't be happening to me....My symptoms began in October of 2017 with constant headaches and a dull ache in my back shoulder area I seen my GP dr. Who sent me to get a ct scan of my lungs..when I returned for my results which revealed something called ground glass nodules and interstitial lung disease but my Dr did not seem concerned with that, at this point I had begin to experience weakness in my right hand I could not open bottles and jars and Packaged food.


My Dr sent me to have an EMG, upon returning for those results I could no longer touch my thumb to my pinky finger no matter how hard I tried and the muscle twitches were wide spread and reoccurred constantly it literally looks like a worm or alien crawling under my skin, my EMG revealed severe nerve damage and I referred back to the neurologist that performed my EMG..he did a physical examination and performed a series of little test he 3then sent me for blood work which was all ok except for presence of antibodies, he then sent me for more blood work and brain and spine MRI s along with a spinal tap and lots more blood work .



All test were somewhat ok except for the brain scan..So the neurologist looks at me and says I believe you have ALS but I do not want to give you that label yet he wanted me to do IVIG treatments for 2 months which still have not started...insurance problems...


i knew nothing about ALS except it was a crippling disease imagine my shock when I researched it. So here I am getting weaker I can no longer straighten my index or ring finger or button up mine or my kids clothes I can't wash dishes (thank God for teenagers ages 13 and 16) or unbuckle my babies (ages 2 and 4 yr. Olds) carseats. I have fallen twice and am tired all the time of any walk briskly let alone run which is not good when raising young kids (all boys )..



So my concern here is though I have all the symptoms of ALS what I don't understand is the unbearable pain in my shoulder that seems to radiate to wrist and settles into my elbow and top of hand thumb side..I wake up with so much pain fist clinched and hard to open and it's very difficult to move as the pain in my shoulder is so intense..does anyone else experience this and could this be something else anything else except the death sentence I've seemed to be handed?

 

[Nikki J]

First I am very sorry

Who gave you the diagnosis? Was it a neuromuscular doctor? Have you had a second neuromuscular opinion? Both are absolutely necessary and urgent. I think that Mayo JAX would be the place for you to go though my Florida geography is very fuzzy.

Pain is not usual early on but you could have injured your arm due to weakness

A trial of IVIG is sometimes tried if you have no upper motor neuron signs or a conduction delay. Did you have anti GM 1 ABs done? Where those the antibodies you mentioned and was it classic for MMN or just a little abnormal?

If you care to share the EMG and NCS results we might make a comment

If it really is ALS it is not an immediate death sentence. If you read her especially on stories of hope subforum you will see PALS are still out and enjoying life

 

[Bonnie828]

The Dr that told me this is a neurologist in the Center for movement and neurological restoration It is part of UF Shands..No I haven't had a second opinion and I assume the Dr is educated on ALS being that I'm scheduled as an ALS patient...but to be honest I'm in the dark on alot,I go to my appointments alone and am often intimidated confused and don't know what to ask..i would love to share those test results but I don't have them nor do I know how to get them

 

[Nikki J]

You have every right to your medical records. If there is a patient portal you may be able to view them online ( I could see my anti gm 1 AB and MRI results but not the EMG). If you can’t see them you can request copies. Look at the website and search medical records request. I can print a request that is faxable and records securely emailed.

I encourage you to get everything and start a folder.

You can view your doctor’s credentials online. If you care to share the name I will do that for you.

Please please go for a second opinion. It is extremely standard and often suggested by the diagnosing physician. This is way too important not to explore every option.

You deserve answers and clear explanations. This is overwhelming of course. Can someone go with you to appointments?

 

[Nikki J]

Looking at the movement and neuro website for Shsnds I am not seeing ALS. That seems to be under neuroscience. Please please look into this. I am not saying your doctor is wrong but you need someone who sees ALS all the time and you need 2 opinions from different neuromuscular centers

 

[KarenNWendyn]

A “ground glass” appearance to the lungs suggests interstitial lung disease and is often autoimmune. That would point away from ALS.

There are a number of other conditions that can mimic ALS, including some autoimmune and some malignant conditions.

Nikki is correct that you deserve explainations. Keep working with your doctors. Unfortunately it can sometimes take a while to get to the bottom of things, and the wait is painful when you’re suffering an your mind is racing like crazy. Hang in there!

 

[Bonnie828]

My nuerologisr name is Miguel Chiguillin Arista , Yes I do have interstitial lung disease he ran a lot of blood work concerning that all were negative results i do have access to my health portal but EMG results are not there it's the brain scan that mentions ALS

 

[Nikki J]

It looks like he in board certified in neuromuscular and has ALS experience I would still seek a second opinion no matter how qualified.

Not surprised you can’t view the EMG report but you can request it

Good luck

 

[KimT]

I second the suggestion from Nikki. Go to Mayo in Jacksonville for a second opinion. I've dealt with both Shands and Mayo. First, get all your records from Shands. They don't upload tests onto their portals but I had no problem getting my records copied and released to me when I went to Johns Hopkins.

Dr. Dimberg or Dr. Boylan are both excellent doctors. If I were going back to Mayo, I'd go to Dimberg.

 

[lgelb]

Like the others, as for everyone we advise getting a 2nd opinion (even your first opinion is wishy-washy, since IVIg does not work in ALS), and Mayo/JAX is a great place to get one. Don't delay. You may have something treatable, and even if the worst is true, you will want to know for certain.

Best,
Laurie