Seeking input here - back problems caused by MND?

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Seeking input here - back problems caused by MND?

Postby Xina535 on August 7th, 2015, 11:57 am

Ok, I have been off my meds for 2 days, due to me not being able to get the prescription filled in time, and I feel so sick. I finally just got it and took one. So this may seem like a weird post, but I am in a weird spot right now.

But during the last two days, I read an article that the CEO of Travelers was diagnosed with ALS. He said something similar to, "looks like I have something worse than just a bad back." :shock: :shock: :shock:

This put me into a spin and I would like to ask for opinions or for people to tell me to stop and get this out of my head.

Is it possible for the spinal muscles to become weak from ALS and THAT weakness cause herniations and unstable spine/back issues?

Example: I have two cervical disc herniations. The report says all kinds of crazy stuff, but also that they are not bad enough to be causing any symptoms in my arms and hands. However, I have lots of symptoms in my arms and hands. My right hand symptoms are progressing, not just from my thumb feeling weak and the "dent" I've written about before, but now, my pinky and ring finger are....very very strange. The whole hand is now having weird issues with grasping, and these fingers seem dead at times. But, when my husband tries to break my pinky and thumb apart, he can't. I can't describe really what is going on.

So, all physiotherapists and orthopedic doctors have told me my neck muscles are weak. This is causing the instability and probably what caused the herniations. Well, I had been doing all my exercises to strengthen them, and just now the other day, back at physio, he says again that my neck muscles are weak, I need to do more exercises. How can they always be weak?

Is is possible they are weak and maybe weakening due to MND? So the weak paraspinal muscles are causing an unstable spine, which could be a possible reason for my arm/hand symptoms?
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 7th, 2015, 12:27 pm

The exact cause of ALS is not known, therefore your presenting symptoms cannot be definitively attributed to ALS. Have an EMG of the neck muscles in question to determine if there is a degenerative pathology.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 9th, 2015, 7:19 am

I know the exact cause is not known, for ALS or BFS.

My question was more asking input if based off of what they know, could ALS start in the neck muscles and then the neck the getting weak so it causes herniations? Like, could that link be there?
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Re: Seeking input here - back problems caused by MND?

Postby raindog on August 10th, 2015, 6:57 am

Nobody will ever know what is the exaxt cause of their diagnosis as were are all genetically different. Same can be said of BFS PNH
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 10th, 2015, 2:04 pm

It's like cancer it can start anywhere, but where motor neurons are involved in some way.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 10th, 2015, 3:10 pm

At physiotherapy tonight, the man who owns the place worked on my neck and helped the range of motion (hurt a lot) as he massaged my neck and the brachial plexus area, my arm/deltoid started going hot and painful again. He stopped what he was doing and said that it sounded like a nerve infection to him, which is what I was on cortisone therapy for in April.

So then I came home, wanted to put a cold pack on my arm cause it was burning up, and I couldn't feel the cold!!!! If I put the pack a little down I could feel it was very cold, if I put the pack up a bit, I could feel it was cold, but on the spot where it was warm, I couldn't feel the cold pack at all!!

Please tell me this is a good sign, in that this points away from....

Of course, my arm feels weak, but when the neuro in the ER tested it on Saturday, and the physiotherapist today, there is no clinical weakness.

Right now, on top of this, my right pinky and index finger are going numb too (only on my palm side), has a weird sensation, but full strength. Example. My hubby can't pull my pinky and thumb apart. I have the same strength as my left hand. But it feels like as if it's asleep but not as tingly. I am getting most of the tingles in my Thenar (palm side).

You guys, nerve infection? This in my right hand, could whatever this is be spreading? Shouldn't I be seen? Is this urgent?
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Re: Seeking input here - back problems caused by MND?

Postby leroyb on August 10th, 2015, 4:50 pm

Nerve infection? in my experience don't listen to anything a physio has to say that isn't related to their field.
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Re: Seeking input here - back problems caused by MND?

Postby RIno468 on August 10th, 2015, 5:57 pm

Xina - I don't have an answer for you for your question --

but you don't have ALS so -- there's that.

You have been on this forum longer than me -- if you had ALS -- some part of your body would not be working now.

I can see your backsliding into old routines again ----

YOur thought pattern needs to be rewired -- you don't HAVE ALS!

you dont
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 10th, 2015, 6:14 pm

Physio may be referring to inflammation caused by some other factor. I agree to not opine in areas not your forte'.

leroyb wrote:Nerve infection? in my experience don't listen to anything a physio has to say that isn't related to their field.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 11th, 2015, 5:20 am

Ok guys, let's back up a bit.

My deltoid and neck had been in pain since December. My whole arm had every symptom known to man, including the burning I am feeling now again. In April, an EMG was abnormal and I had clinical weakness. I was put on cortisone therapy and in FUP appts, the EMG of the deltoid was normal and clinical strength returned. One neuro said it was Brachial Plexus Neuritis and 2 other neuros disagreed (one of the two said he doesn't know but, "something must have attacked me"). So I have no real answer as to what happened and looks like is still happening to my arm, esp. since the burning is back and is really now totally numb! When the physiotherapist told me his opinion of a nerve infection last night, that matched what the one neuro diagnosed me with "neuritis". Side question - if I have pain, numbness and burning (sensory symptoms) how can the EMG return to normal, or would it not pick up sensory stuff?

Now, I admit I went off track again, and it is due to going off meds (because I could not get them refilled in time) and new twitching kind that I never had before which is seeing but not feeling. Today, my twitching is EXPLOSIVE - all over, all kinds. I feel like if someone looked at me naked, I would look like a popcorn bag popping.

So yea, we all say that as long as we twitch but we don't have other symptoms, the twitching is benign. Well...not the case with me.

Today:

I have this "thing" with my left arm as explained above.

I have numbness happening on my right palm, last two fingers, and I think it's spreading. My cat put her head on part of my forearm last night. I woke up to see that, but i couldn't feel her head on my forearm. And no, my arm was not twisted and numb like how it can happen when you sleep weird.

I have had problems with my right thumb (weak pinch and constant tingles in my palm thenar) and atrophy of some kind (doctors saw shrinkage, but could not tell if fat or muscle atrophy).

I've had a left leg problem for 2 years now, where it went numb/lame and then came back, also no definite reason for that.

Plus all over body twitching, and recently, like mad!


Above, misterjuan and raindog mentioned that "it" can start anywhere, no one knows really - so my twisted, non-medicated mind starts thinking, "What if my neck/back muscles are weakening due to ALS (no EMG there yet) and that is causing nerves to be pinched or become aggravated, which could be causing all of these symptoms?" The one CEO said, "turns out I have more than just a bad back." So that put me on the MND path again.

If this is not that, something else is happening and I AM FREIGHTENED! These symptoms all together are SCARY AS SH**!!!!! I can't look at my twitching, with the other symptoms I have and go, "Oh, it's nothing, totally not related." No doctor takes all of this serious enough to try to figure out to where I could maybe get the treatment that I really need. ESPECIALLY when they see I've been diagnosed with xyz mental disorders. AND I've lost so much trust in the doctors, due to reasons I've posted on here about before.

I know I've been twitching for over 2 years now, but I do have other problems than just twitching - and I've read too much about how "progression varies between people" and "it took x years to diagnose me" or "I very well had pain in the beginning".
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 11th, 2015, 5:44 am

Xina, my entire back is pretty screwed up. This was identified after MRI, twitching and hyper-reflexes upon examination by my doctor(s). Could this be ALS? Who knows? What I do know is I am sick and tired of worrying without answers or solutions. What I am doing now is pursuing every known possible cause of twitching, no matter how remote, up to and including digestive enzymes and any possible liver issues. I have noticed one thing. Alpha Lipoic Acid 600mg/daily has reduced the numbness, paresthesias or other sensations that have been so prominent during sleep or while supine and sometimes while awake. This is backed by the studies I linked in another post here: viewtopic.php?f=3&t=21688#p162826

Other blood tests I am pursuing are: PTH, TTG-IGA, RNA, GLYRA1-IGG, AGA-IGG
A list of blood tests already done beyond routine ones are located here: viewtopic.php?f=8&t=21622#p162527

I will not stop hunting until I find out what is going on, even if it does turn out to be ALS. For this, you need a doctor that backs your efforts, even if he's not the best.

Note: The medical industry will not confirm any cause of symptoms without imperical evidence or in the presence of financial or time restraints. The industry works in a way that is not motivated to find causes as we would hope they would.
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 11th, 2015, 6:32 am

misterjuan - how long have your twitches been going on? Does their start date align with when your back pain/problems started? I applaud you for not giving up on this. I am trying to do the same, but I run into so many mental blocks and challenges.

I am pretty freaked out to read about the "exciteobility" - about how the nerves get so excited in a short period of time then they just start dying. :shock: :shock: :shock:

What I keep telling myself, for some kind of comfort is this (thinking in "usuals"):

ALS does not usually start in the shoulder or back, or start with lots of pain.
It is unusual for ALS to affect sensory nerves, and would not cause tingling, burning or numbness.
ALS is usually progressive in time where if I started twitching 2 years ago, I would have something worse than the symptoms I have by now.
ALS usually affect ages over 40-50, and mostly men more than women.
ALS is mostly progressive where it does not wax and wane - so my strength coming back in my arm and leg would point away.

So if this were ALS, then it would be a rare instance, at a rare age, of an already rare disease.
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Re: Seeking input here - back problems caused by MND?

Postby leroyb on August 11th, 2015, 11:17 am

XIna your age and sex mean your chances are incredibly low but you sure as hell don't have plain old BFS. That is blatantly obvious. Anxiety can do a lot but not what you are suffering.

I echo what Juan said. Find a Doctor who will work with you to identify the problem.
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Re: Seeking input here - back problems caused by MND?

Postby misterjuanperalta on August 11th, 2015, 11:33 am

For me, twitching has been happening since July of 2014. My sensory symptoms are more noticeable, but no weakness. Tongue twitching is very minimal now. Mayo Clinic visit on May 26, 2015 was "normal".

See link: viewtopic.php?f=8&t=21622#p162527
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Re: Seeking input here - back problems caused by MND?

Postby Xina535 on August 11th, 2015, 12:11 pm

leroyb wrote:XIna your age and sex mean your chances are incredibly low but you sure as hell don't have plain old BFS. That is blatantly obvious.


Thanks - but what about my location (shoulder/neck) sensory stuff, time/progression and strength coming back? Don't these also "generally" point away? Or did I miss something somewhere big time?
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Re: Seeking input here - back problems caused by MND?

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