Professing symptoms (35 female)

[LizO34]

Hi all,

I hate that I’m even here to question but here I am. I’m a 35 year old female and an athlete or atleast was until 8 weeks ago today.

It started with mild inner knee twitching on my left leg for a few days I blew off. But then it spread everywhere within a week and hasn’t stopped since. I was having what felt like fatigue on my left quad and was having low back pain on the left side which my PT thought was SI joint pain. Had lumbar MRI and all was fine except a small root cushy which she said couldn’t cause those symptoms. Kept having random shooting pains on my thigh muscle b it haven’t been as much lately. Just an overall fatigue in that leg. More like an exercise Intolerance on that side.

Of course the neuros I’ve seen just say it’s anxiety and I get it could be. I’m already seeing a therapist for daily stuff and on lexapro. I’ve got 3 small kiddos so it’s causing me distress all these symptoms.

I then started having what felt like nerve pain almost sciatic like and it would come and go on the left side but as someone who knows the body and anatomy well I figured it was that or piriformis issues.

But then a week ago today I started having cramping in my hands and feet (never have I had cramping before unless 9 month pregnant.) so I l ready knee cramping and twitching are so common. In early ALS a friend of mine who’s mom had it so I already knew some of the initial signs.

Then I started having nerve pain in my left arm and fatigue feeling which is thought was a trapped nerve so did some nerve flossing exercises for a few days which helped the pain but fatigue still there.

A couple night ago I woke up having a panic attack which I’m assuming is the medication because I’ve never had them before and my right arm felt weak and fatigued and just heavy. Like I could do everthing but my proprioception was off. Like my 3rd and 4th fingers just felt heavier.

I’d also been having myoclonic jerks during the day but also at night which I know can be normal beige you fall asleep but I couldn’t sleep because I kept jerking awake. That subsided but came back a couple night ago when my son coughed and I jerked so hard awake multiple times.

When I saw my Neuro last who’s only available once a month said all was fine on her exam but he cramping and now muscle spasms in my neck that all started a week ago have my a it terrified. I don’t want to believe this could be it but there’s no other dirsease I’ve seen online that correlates with the hand and foot cramps limb weakness and neck spasms.

Should I be preparing for the worst at this point?

I think the thought of leaving my 7 and 3 year old so soon is devastating. I read a study on pubmed that talked about a 35 year old
Girl Who had similar symptoms and died 9 months later after being diagnosed within 6 weeks of symptoms.

Thanks for your time

 

[lgelb]

I don't see any reason to think about ALS, but your neuro can order an EMG or any other tests that she feels are warranted. She might consider a sleep study, for example, or an EEG.

It would be an extraordinary onset to manifest so many issues, many not ordinarily related to ALS, in eight weeks' time. So while you may feel ALS is the only possibility, for me, it's at the bottom of a very long list.

You are obviously reading a lot on line, which there is really no point to, especially focusing on one disease. A case report is hardly a diagnosis. Anxiety about one problem can easily fuel others, including spasms, fatigue, and balance.

You can't diagnose yourself. My advice is to follow the process. But to answer your question, no, I think "the worst" is not ahead of you today.

 

[LizO34]

Thanks for your reply. I appreciate it. Just trying to keep my cool while waiting for the emg. I forgot i get sharp shooting pains in my right arm and more so my wrist (obviously when I put pressure on it as well) which made me think carpal tunnel ( which I know is so common) But the fatigue is all the way up my arm so I didn’t think that could be it. But the cramping is the worst even at a relaxed state my hands and bottom of feet cramp up.

Anyway, thanks for reading my message. Sorry about the auto correct errors.

 

[affected]

The great news is that in all my years supporting people with ALS I've never, ever, heard of ALS beginning this way. You are jumping from twitching and cramps to dying in a huge leap and this is not going to help your children in the least.
Stop googling immediately and see a doctor saying you don't believe that the neurologist was honest with you and get yourself together.
Now, take a breath, and seek help from doctors, not the terminally ill and their carers.
You can beat this fear, I promise you.

 

[LizO34]

Hello again,

I was able to fly to instanbul and get an EMG and NCS. I know strange I would fly there but my family and I live in Prague although we are from the US. I had one done this last Saturday. She said everything was normal. Although I can’t see how there was nothing crazy seen on there.

Can you guys look at the report for me? She did my hands, forearms, biceps and triceps a couple different times and both legs and under my chin.

I have to Google translate her conclusions so I apologize as it’s in Turkish.

Also, what is a specialty in Electrophysiology? All I could find was about cardiac stuff but curious how that correlates to neurology.

I hope the upload is ok visually.

 

[LizO34]

Sorry I didn’t block out the info so I re uploaded it. Not sure how to delete the other one. Hope it’s eligible.

 

[Nikki J]

I had to delete the table because it contained your name but it only showed the ncs. The emg is the important part did you have needles or just shocks? If you had needles there should be a repirt listing muscles down the left hand column and the things they are looking at across the top usually starts with fibs. The columns are filled the numbers or none normal for the left hand things. The two things we might comment on are that and the summary which is normal. Normal is good news.

in the neurology world electrophysiologist means an emg specialist

 

[LizO34]

I don’t have anything here. Only the table and the other stuff. The ribs table and stuff is empty. And yes the emg was needle test and it was awful I’m covered in bruised everywhere from it.

 

[LizO34]

Dumb founded why that table is empty. Ugh.

 

[Nikki J]

I get that you would like to see the normal and zero but if there had been anything to note that was abnormal they would have done so. And you have your summary which says normal which is the bottom line. Normal emg and your neurologist at home examined you and said you were ok

 

[LizO34]

I mean is that normal for a Dr to not put anything in that summary though?

 

[Nikki J]

I have seen it before but if you don’t believe the summary and are not satisfied you can contact the doctor and ask.

 

[affected]

The conclusions says NORMAL.
That is such great news. You can honestly accept it.
Return to your regular doctor and ask what they feel is the next step. I hope you return to full health soon.

 

[LizO34]

Hi guys,

This was the best translation I could get. Always a bit difficult living over seas with medical stuff. I know it says normal but what does the few long term MUP mean?


IN THIS EXAMINATION MADE WITH THE ON DIAGNOSIS OF MOTOR NEURON DISEASE-POLYNEUROPATHY, THE PERIPHERAL LIMITS were Stimulated in the FOUR EXTREMITIES AND CONCENTRIC NEEDLE EMG WAS DONE.


-SENSIOUS COMMUNICATIONS WERE NORMAL. (MEDIAN-ULNAR-SURAL-SUP PERONEAL)


-ENGINE TRANSMISSIONS WAS NORMAL.(TIBIAL-PERONEAL-MEDIAN-ULNAR)


-CONCENTRIC NEEDLE EMG ALSO A FEW LONG-TERM MUP LE R WERE OBTAINED AS WELL AS NORMALLE IN DUAL TRICEPS.

CONCLUSION: THIS ELECTROPHYSIOLOGICAL EXAMINATION IS NORMAL. CLINICAL CORRELATION AND ELECTROPHYSIOLOGICAL CONTROL IS APPROPRIATE.

 

[Nikki J]

Not much. They can be seen just because someone has good muscles or from a healed injury. They are only remarkable if there are a lot of other findings on the same muscle at the large mup. it is clear from your summary you did not have this