Dad with ALS, now I’m afraid of symptoms

[RachN]

First I’ll say, my dad died of ALS at 57. But he’s the only known case. His doctors at the time were not concerned with it being familial but was never tested for anything .

My symptoms started in February. Feeling of weakness in left hand/forearm. When clinching fist, hand tremor. When resting, no tremor. Tremor affects entire arm now when pushing or pulling. EMG completed 1 month after symptoms. Clean EMG. Twitching in feet, shoulder, and legs. Pinky finger twitching, moving entire hand. Hyper reflexes but seemed bilateral. Doctors not worried. Brain MRI came back clear, so no MS. Neurologist, and general doctor diagnosis of stress and anxiety, says NO ALS..... but both anxiety meds I’ve tried make left leg and arm shake like crazy.

Original Pain in my left neck/ shoulder area only at first. Now I am getting sharp intermittent shooting pain down inside of forearm and into pinkie finger. Entire forearm feeling tight. All pain comes and goes. I notice pinky dexterity to be off, but no clinical weakness. Noticing atrophy in left thumb and palm of hand. Physical therapist notices too Again, EMG didn’t pick up a sign of pinched nerve either. I’m really worried about this. Went to physical therapist today, he noticed bicep Hyper reflexe in left arm, which Nero didn’t see a month ago. I know doctors say no ALS, but could they be wrong? Or tested Emg too early? Going in for cervical MRI tomorrow.

 

[Nikki J]

Hi
First sorry about your dad

Second would you please remove the diagnosis date 1/1947 which is confusing to the extreme. You are undiagnosed the correct entry is 00/00. If that was your dad’s diagnosis date how old are you please?

Tremor, pain and feeling weak are not ppresenting ALS symptoms. Twitching is non specific and hyper reflexes are meaningless without other findings.

I would suggest checking back with the doctor but not worrying in the meantime

Your increased risk of having ALS with only one parent affected is very small

 

[RachN]

Changed it. That was an accident. Thank you!

 

[RachN]

I’m relieved to read this. I’m having exact symptoms on left side.4/5 fingers aren’t functioning. Twitching in my feet and some left hand atrophy a little... Neuro says “anxiety”..... but I’m losing function. Also a mom of 3 and worried! Consuming my life and making me sick.


(mod note: moved from another person's DIHALS thread- please only post within your own thread, per forum posting rules)

 

[RachN]

After a cervical mri, I received the following : cervical stenosis c4-c7. C4-c5 has anterior spinal cord compression/flattening. 2 protuded discs, right side pinched nerve at c6. Also bulging discs L3-L5. But neurosurgeon says not operable. Doctors can’t explain why my pain and twitching is on the left arm and leg. Pain management wants me to get a second Neuro opinion to rule out MND again. 1st Nero ruled out but pain management wants ruled out again. Pain going on 4 months. And just tired.

 

[lgelb]

It is just as appropriate to get a second spine surgery opinion when someone says "not operable" as when someone says it is, and to seek an opinion from a physical medicine & rehabilitation physician about the best regimen to address your symptoms if surgery is not indicated ever or as yet.

I would put that second opinion ahead of another evaluation for MND.

Very sorry about your dad.

 

[RachN]

I’ve been to 2 neurosurgeons. Both inoperable . Idk what’s next. At a loss.

 

[lgelb]

There are many other modes of treatment besides surgery, such as PT, injections, acupressure, massage, etc. That is why I suggested a physiatrist as you will find at academic medical and spine centers.

 

[RachN]

Thank you for your support. This site and others stories have been a support like no other, during a very lonely journey. A journey I know to well by living with my dad. I pray this morning for all those going through this and for those diagnosed .

 

[RachN]

I want to follow up for those reading or future people having anxiety about the possibility of ALS.

I saw the 3rd neurologist yesterday who put me through a series of tests. And came to the same conclusion as the others. NO ALS. I am thanking God and my guardian angels.

I was stressing big time Bc I had the following symptoms: hyperreflexia in both knees, left hand atrophy (thenor muscle), body wide twitching, pain in left arm and left leg, twitching in bottom of both feet.

Neuro spent 1.5 hours with me and started off explaining to me that I probably have some type of “ptsd” from my dads death and being worried about my future (and rightfully so). Then explained that my reflexes were what she would call “medical student reflexes” and rated them a 3 and stated they were bilateral and she would still consider normal. She is assuming based upon her exam, I sustained an injury in that left shoulder at some point. (Which I did hyper extend 18 years ago and I’ve told 3 of my doctors in these last 4 months, and they weren’t concerned). Neuro said “oh you have hyper mobility, that explains so much”. proceeded to explain that my muscles in neck, shoulder, even chest were SO TIGHT, and that being hyper mobile makes me prone to muscle injury such and tears and scarring. This has become such a big problem, that my nerves are struggling to go through the mess in my muscles.

As far as my leg, she assumes a similar issue but to a less degree. She offered to do a 4 limb EMG, and I asked her if she was recommending it. She said no, but would do it for paper proof if I needed it. I opted to NOT have the Emg done, Bc she really thought it was pointless and I decided I needed to let this ALS fear go, and move on with my life and be thankful for the doctors time.

24 hours later, my twitching is almost gone. I think that was anxiety. Thank you to this group over the past 4 months, as it was a resource for me during my fearful moments. I will continue my physical therapy that I was told to complete and hopefully I’ll regain some of my muscle loss from my hand. I will say a prayer for each of you affected, and I will Continue to help raise money and awareness to this awful disease. Closing this chapter and hoping to never face this fear again. But wanted to give reassurance to any future person that lives in a medical fear, that just Bc there are similarities with your symptoms, this is proof that it can be a million other things......thank you from the bottom of my heart.

 

[Nikki J]

Thank you for returning to tell us this. I am very happy for you and very glad you found a neuro who took time and that believe her.

PTSD after losing someone to ALS is very common I think and very real. I don’t think someone outside the situation can fully understand or appreciate just how devastating it is.

Best of luck and a long and happy life