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HopeNPrayer

Member
Joined
Jun 29, 2018
Messages
10
Reason
PALS
Diagnosis
02/2018
Country
US
State
VA
Hello all,

I never in a million years thought I would be joining a group here, but turns out it is looking like this is the next phase of my life. I started noticing a little weakness in my right leg, especially getting into a vehicle for ie. Also around the same time, I kept wondering if the thigh muscle seemed a little smaller. I was under a huge amount of stress and just figured it was from that and my Addison's Disease. This was Spring of 2016. Now, I look back and see it as a beginning sign.

I had a house fire earlier that year, almost a complete loss. So dealing with contractors, insurance companies, moving multiple times, starting a new job, and losing sentimental things...stress and grief were always there. On top of it I have Addison's -which doesn't respond to stress well. Back in 2016 I started losing weight, which I thought was usual. 15/20 lbs. A lot for me, I am small framed. Thought it was stress induced from being to busy and maybe not eating as much as usual.

Summer of 2017, I noticed it looked like my hip muscle seemed 'sunken in'. Soon after, I started falling here and there, seemed more clumsy. August 2017, was out to dinner with girlfriends, had small heels on, and just couldn't walk at all. Ok, somethings not right here. Started tripping over my toes, realized my toes were catching and making me fall. So..googled and discovered foot drop.

Foot drop...studied and thought to myself right away..I have ALS. Not MS, but ALS. Looking at the two side by side on a chart, and my gut said ohhh no.

Complete Brain/Stem/Spine MRIs -all clean, however showing mild scoliosis and a few other things. later, Neuro and PT. Physical Therapist had Russian E-stem on my Tibialis Anterior but my muscle loss quickly went to 0 out of 5.

Finally Finally, got my EMG/Nerve Conduction Study. Neuro says that she see signs of LMN and UMN. Results show an Abnormal EMG. Summary says, Widespread Nerve issues, don't meet criteria, have to monitor for MND ie ALS. Neuro also says...to explore ADL (considering I already have Addison's even though more common in boys, and also West Nile Virus.

Well, here we go. Now what. I'm not sure if I am in the denial or acceptance stage. My leg thigh atrophy is pretty bad, very obvious. I can see atrophy in my feet now, and I am pretty sure in my hands.

I need to get a 2nd opinion EMG study, and need to go see a MND specialist.

I am thankful for sites like this, because this is a lonely strange and absolutely scary scary disease. If my symptoms started back in Spring 2016 and its Summer 2018 would my symptoms be further along?

I've been tested for lyme, lead, etc. I still want to get tested for more heavy metals as I see this happened right after my fire and who knows what I was exposed to.

Any advice or suggestions would be great. I research like crazy, which is probably a bad thing, but how can ya not.

Take care everyone, and know that God is in the middle of this mess.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
2,596
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
Hi Hope-

I have moved your post to the DIHALS subforum, as it sounds like there is some question about the diagnosis of ALS at this time. I heartily recommend you have a look at https://www.alsforums.com/forum/general-discussion-about-als-mnd/30260-second-opinions-first-clinic-visits.html about getting a second opinion, if you are that far along in your diagnostic path. It sounds like your doctor is following all the right steps, and a referral to a neuromuscular specialist is absolutely your next step. I am sure members can step in here about the best place to go in your area.

It sounds like you have had some incredibly stressful times and you are approaching your health concerns with practicality. I hope you are able to get an appointment with a specialist soon, as it sounds like this will direct what treatment and care you will need to plan for.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,832
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Sorry to hear of the fire and subsequent concerns, Fredericksburg. The good news is if your symptoms began 2y ago, it's a slow progression.

Both Georgetown and GW are options for second opinions. There is another center in Newport News (Riverside) if that is easier to get into.

Best,
Laurie
 

HopeNPrayer

Member
Joined
Jun 29, 2018
Messages
10
Reason
PALS
Diagnosis
02/2018
Country
US
State
VA
Thank you for your reply. I'm not used to forums...what does DIHALS subforum stand for? ;)
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,523
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Hope,

Get that second opinion. I'm praying that it is something else.
 

HopeNPrayer

Member
Joined
Jun 29, 2018
Messages
10
Reason
PALS
Diagnosis
02/2018
Country
US
State
VA
Hi,

Thank you for getting back to me and sorry for your loss. I'm sure you are able to help out a lot on here! Thank you for giving back.

Neurologist said that my initial exam appeared to be CNS, and of course MS made the most sense. My gut and her response and summary of my abnormal EMG point to ALS. I have had fasciculations, noticeable atrophy, I am seeing muscle loss in both feet, foot drop, can't climb up stairs, walking is a challenge, slurred speech..I pretty much use a cane as this point. No clonus, Hoffman is ok, I can't stand on my heels, I can't run my right leg down my shin bone, etc. But yes, it does seem on the slower side looking at an average prognosis.

I have though had numbness and tingling in my back and head, legs, lips, tongues, loss of sensation. Wondering if anyone can say they have this with ALS? Sensory nerves affected?

Also, has anyone on here been diagnosed with ALS to then be something else or visa versa?

Yes, I am lucky to be close to DC, thank you for the suggestions. ;)
 

MVFinVA

Distinguished member
Joined
Sep 5, 2017
Messages
116
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
VA
VCU and University of Virginia both have ALS Clinics.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,947
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am sorry for what you are going through.

DIHALS is do I have ALS the name of this subforum. It is a way station for those who do not have a diagnosis but ALS is considered ( often just by the poster not their doctor). It is meant for people like you who are in the diagnostic process. We hope you don’t have to move to the main forum.

Sensory nerve involvement can happen in ALS usually when the disease has spread. There is also the possibility of two or more issues

There are misdiagnoses both ways. Supposedly 10 percent of initial ALS diagnoses are overturned. I think often those diagnoses are before seeing the neuromuscular specialist.

There are ALS mimics and having another disease already can sometimes confuse things for a while. A good neuromuscular specialist can sort through it all
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,832
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
True, M, UVA and VCU do have clinics. For a true "second opinion" in this case, I thought DC might be a better bet. S/he can certainly opt for ongoing care closer to home.
 
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