Questions For Those Who Care to Read

[Tarheel2005]

I’ve been very reluctant to post hear in an effort to be mindful and kind to those who are currently living with this disease or have been directly impacted in some way by ALS. Please let me take this opportunity to first apologize if I upset any one or offend anyone...or even if I make myself look dumb in your eyes. I’m not looking for a diagnosis just some clarification.

I have read many of the members discuss ALS as a sense of distinct “failing” rather than “feeling.” So while keeping that in mind, I do still feel the need to at least describe what has been occurring and move forward from there. Perhaps there’a Someone on here who can help guide me.

Over a month ago, I began feeling and distinct sensation in my hands and feet (it would run the forearms and distally to my hands and fingers). It would also do this running down my shins to my toes. The best way I can describe this would be an odd buzzing/ creeping/vibrating from the inside out sensation that literally came on within seconds and could be stopped just as quickly as it started by touching the source of the sensation or shaking it off.

However, considering its nerve-like nature, I felt it was important to have it checked out by my Neurologist.

An MRI of the brain and cervicle spine was done. Nothing exciting to write about there other than djsdefeneration on the c4,c5 and c6.

The other thing I mentioned to my neuro was strange groin like cramps mainly present when sitting down and a strange stiffness behind both hamstrings at various times. Along with a radiating type sensation that ran down the front of my right leg from time to time.

He seemed interested in none of it. He took several vials of blood and when I came it to go through the nerve conduction test and EMG, he was very matter of fact that the reason for my sensory symptoms was due to a b12 deficiency bc my Homocyestine levels were too high thus not channeling the b12 properly.

The Nerve conduction was “abnormal” but he said it was so minor that he felt it was due to the b12 defeciency. When asked why he didn’t perform the EMG, he said he got all the muscle information he needed from the nerve conduction. This seemed confusing to me bc I was always under the impression an EMG was nexessary to rule out any neuromuscular abnormalaties.

But again, I went with it. He ordered PT and a standing desk for more efficient workplace accommodations. From mid jan to my appt with him to complete the NC study, the sensations had eased up some so I felt really good about the test however, about 5 days later they rested their ugly heads again. Along with stronger cramping in the groin an stiffness behind the legs.

I also began having intense fasiculations in my left leg that wouldn’t stop despite everything I tried. Even a good punch to the leg. They lasted for hours until I went to bed and then I awoke the next morning and they were gone.

I called my neuro in complete tears. Between the cramps, twitches, groin pain and sensations, I just wanted to feel like the old me. He said there was nothing more he could do for me and that it takes time for the b12 to work and to continue with the PT. In the meantime he prescribed methylprednisone.

So here’s where it gets real interesting...

The prednisone actually made me feel better but when it wears off, the symptoms slowly creep their way back in. I also noticed that these sensations seem to be more frequent with movement. I never have them at night, I never have cramps at night (not that I can feel anyway).

The PT has made me feel like I’m 80 years old which seems strange considering my age and just 6 months ago I was working out almost 4 days a week.

So, my question bc there seems to be some conflicting info out there in this:

1.) can fibrillations be felt?
2.) was Anyone every prescribed prednisone while going through the diagnostic process and it actually made them feel better
3.) did anyone experience as a early symptom groin pain (more radiating than cramping)
4.) did anyone experience tightness in the back of their hamstrings (like no stretch can get it loose)

I’m wondering if I’m having some type of autoimmune response but I’ve had so much bloodwork and nothing has come up other than I had high homocyesteine levels. I have already made an appointment with a neuromuscular neurologist (she’s not available until 4/26 though)

Thanks for reading. I know this was long and I know some of you will probably roll your eyes but I’m just trying to get to the bottom of what is going on with me

Thank you to those who are kind enough to respond and provide insight and support. And to those who just get plain aggravated, I apologize deeply in advance.

 

[ShiftKicker]

Mod note: moved to DIHALS forum.

 

[GregK]

You already know what we're going to say.... So why did you post here?

Go talk to your doctor, don't mention ALS.

 

[KarenNWendyn]

Nothing in your post suggests ALS. The numbness in forearms/ hands/ feet is consistent with a peripheral neuropathy. B12 deficiency can cause peripheral neuropathy and the symptoms would take quite a while to improve following correction of B12 levels.

Response to Prednisone is nonspecific but also does not suggest ALS. Tight hamstrings and groin pain also not ALS. You can feel fasciculations (twitches), and they are nonspecific. You can’t feel fibrillations.

So follow up with your doctor and stop worrying about ALS.

 

[affected]

Opinion number 3 - not even remotely like ALS.

 

[Tarheel2005]

Thank you to those who responded despite me possibly annoying those who field questions like this on this forum all day adnauseum. I think it’s just incredibly scary because you google symptoms in an effort to try and find out if what you’re feeling is something similar and then you end up down this deep black whole of symptoms that point to something such as ALS. I know one memember on here awhile ago mentioned that possibly fibrillations could feel like a vibration so that’s why I asked fibrillations could be felt. I was also unsure about whether any doctors had given prednisone as a form of therapy before an official diagnosis was made and if that prednisone helped. As Im sure many if you impacted by this disease know all too well, anytime your body starts responding in a strange way or working against you rather than with you, it can be very unsettling. I think another reason I reached out was because there are so many stories out there about people having something as simple as back pain and then 10 months later they find out they have ALS or the young woman in Canada who started having cramps as hee first symptom which lead her to pursue further testing. I am, however, aware that ALS is a disease of progression so one of the main indicators that assists in a diagnosis is that the person continues to decline in some way from a neuromuscular perspective. I’ll continue to work with my doctor going with the b12 hypothesis. But it is somewhat strange considering my b12 wasn’t necessarily out of range but rather my homocysteine levels that he claims are causing this. Thank you for those that responded. Hopefully I am just like many others on here that worry too much.