Pelvic Muscles?

[scaredals]

Hi All,

So, now I'm becoming very worried about my husband. I posted here last week about his respiratory and wondering if it could be the onset of ALS. He's had some new symptoms since then. He seems to be having all these symptoms and they seem to have started about 2 months ago (most of them). His burning feet/legs are about the only thing that started about a year ago. Otherwise everything seems to have started around Xmas and it seems every few days some new symptom is being added. He has no atrophy or weakness that can be seen and he did not have hyper reflexes when checked, his clinical exam of sensory nerves in his legs with the vibration and touch were normal. Around Xmas he started with nightmares, then I noticed that he started shaking really bad when he sleeps (to the point that it wakes me up and I pretty much haven't slept since this started)....some nights it's very mild and other nights it's pretty bad (I think it happens during REM). He's gone for a sleep study and we are awaiting results but the guy said no apnea episodes. He did say his breathing changed during REM but not sure if that's normal or not (it was just the tech telling him unofficially). He's also had on and off a static in his right ear that only happens with loud noises (and hurts) and as soon as the loud noises stop he's ok. Twice he's woken up with pins and needles and a pulsing feeling from his hands up through his arms (stops before the shoulder). He has twitches that come and go (pretty much on his left side only...arm, eye, thigh). Now, he's having some heaviness in his chest and just the other day he had a sharp pain on the left side of his chest that started around the rib cage and went up to his left pec area (lasted about 10-15 min). And now, just 2 nights ago, something really wierd happened. He had a bowel movement that morning (he's had a history of constipation since he was a kid but nothing ever extreme and the doctor suggested magnesium recently which has been keeping him completely regular now) and was fine the rest of the day. All of a sudden he started feeling this pressure and thought he had to urinate. He went but not much came out. Then about 20 minutes later he felt it again but this time thought it was a bowel movement and tried to go...he went a little (wierd for him to have to go twice in one day). Then again a little later he started to feel the pressure again and he said it felt like his anus was tightening up and pushing everything up and it hurt. He took an enema to relieve this pain/pressure and it came out. But now, he was having trouble urinating. He kept feeling like he had to go but was only going a little bit and it burned a little (I thought maybe a urinary tract infection) and told him to drink a lot of water to flush it out. Even with the water he still couldn't go a lot but the burning was subsiding. By the next morning, everything was fine....he had a normal bowel movement and urination. Not sure what is going on. I started to calm down and believe this wasn't ALS until this episode with both his anal sphincter tightening and his not being able to completely urinate happened at the same time and I thought maybe it was a problem with his pelvic muscles...maybe either being too weak (lower motor neuron) or too spastic (upper motor neuron) or one being weak and one being spastic?

By the way, the dr said it's not MS (they ruled that out with the MRIs).

 

[wright]

The external anal sphincter muscle is one of the few skeletal muscles that is spared with ALS and urination problems are not associated with ALS (unless you can't make it to the bathroom because of the inability to move quickly enough due to weakness). Certainly the abdominal and pelvic muscles help with those two movements but you are really grasping for straws if you are trying to equate his symptoms to weakness of those muscles. Please stop trying to fit every symptom into the "ALS box" because it simply makes no sense to do that (unless you make it a habit of worrying yourself needlessly about diseases there is absolutely no evidence your husband has).

The story of your original thread and this new story don't sound a thing like ALS (not one sign or symptom) and I'm going to assume what brought you here was your internet search of "twitches." Your husband has no lower motor neuron signs or symptoms and has no upper motor neuron signs or symptoms (you told us that), so nothing at all points towards ALS.

Relax and let the docs do their job and stop trying to do it for them. I wish you peace and good luck in finding what is causing your husband's "non-ALS" symptoms.

 

[scaredals]

Thank you. Actually what brought me here was the twitches but not the way you think. This all started because of problems my husband has sleeping....jerks, twitches and shakes. Of course, not the twitches that have to do with ALS (even though these have started in him since then but that's probably anxiety). Then I started reading more about it, etc. The fact that he lost about 10 pounds in a month (which is going to bring some muscle mass with it) so that freaked me out. And no matter what this dr says, I know he has a problem breathing at night because this is also the time when he shakes pretty bad. Might not be apnea but it's something....the sleep study unofficially suggests no apnea thankfully. Yet the last two nights I've woken up to him on his back and sounding like something is either blocking his airway or he's gasping....breathing through his mouth and it's a loud annoying sound. He even woke up because of it and said he felt like something was in his throat (yet this doesn't always happen). Anyway, the dr said he cannot rule out ALS yet until the EMGs (he's doing one for the legs Friday and I guess maybe he'll do the rest of the body later on). So, between what the dr said and what I've read, well that's what's keeping me scared of it. But thank you for your advice and trying to calm me (more than the dr will do).

 

[trfogey]

I know you don't want to hear this, but your husband's nighttime episodes from the past two nights sound like the classic symptoms of obstructive sleep apnea. The sleep study appears to have ruled out any type of central sleep apnea, so your main concern driving you to suspect ALS should be relieved. I can see that it isn't, but it should be.

I asked you this question on the other thread, but you never answered it, so I'll ask it again: who was the first person to bring up the possibility that your husband might have ALS -- you or his doctor?

 

[scaredals]

I know they sound like sleep apnea (the obstructive kind...which ALS can cause but I'm not saying that is the case with my husband) but the unofficial results say no apnea happened. The tech isn't the specialist that determines what the results mean but he said that his job is to detect (or the monitors detect) if an apnea episode is taking place during the study so that at a certain point in the night they will use a CPAP so they can compare the results. Of course, and I don't know if this is possible, it doesn't seem to happen every night (just most). I'm sure it was just one of those "lucky" nights where it didn't happen. I feel much better about it not being ALS after Wright's post. However, I did find that the Onuf's Nucleus (the one that controls the anal sphincter and urethra) is actually affected by ALS, something about evidence that it contains some things found in other affected neurons in ALs, however for some reason the neurons don't actually die and the functions remain normal. Here's one link:

Onuf's nucleus is frequently involved in motor neu... [J Neurol Sci. 1995] - PubMed result

Well, after the neurologist examined my husband (the reflexes, vibrations, strength, etc) we asked what it could be. He said RLS (which he doubts because my husband doesn't have the urge to move and sometimes doesn't know his feet/toes even move), some kind of neuropathy (but even though his symptoms sound sensory....burning, pins/needles, hot...the clinical exam showed no loss of sensation or any pain or discomfort from touch) so if it is a neuropathy it's the motor nerves and I read that something like PMA (since he doesn't really show any upper motor neuron signs) can include sensory disturbances. He just doesn't know yet. I asked him about MS (my aunt has MS - actually a really bad, progressive rare form of it that has left her pretty much like what ALS seems to be like but they swear it's definitely MS...and it's been about 10 yrs but she's been in this bad state for years now). Anyway, he said it's not MS because no lesions on the brain (even though they didn't do a contrast MRI on his spine which I think I'm going to ask for). The dr believes it has to show up in his brain too to be MS (i know this isn't necessarily true since almost all of my aunt's are in her spine, I think she had very few in her head). He said it's not Parkinson's...no tremors, pill "rolling", no spasticity, etc. When I asked him about ALS he just said that the EMG will rule it out (he didn't say no like he did with the other diseases). That's what's made me uncomfortable about this. The other thing that is, was a concern, is that my husband has worked with a form of adhesive for about 15 years that clearly states on the bottle some kind of California warning about it causing neurological problems (doesn't specify what). My husband works for his father and they never installed a ventilation system in the building or anything so he inhales and touches the glue. I'm nervous that this has possibly caused a disease like ALS (i know it says things like pesticides and toxins raise your risk). Anyway, that's how it came about.

By the way, regardless of what happens with my husband, I've been so touched by the people on this thread and what you guys go through. Can you please tell me what I can do to help? I already do donations and such for my Aunt with MS but that's everywhere and I know of nothing related to ALS.

 

[trfogey]

By the way, regardless of what happens with my husband, I've been so touched by the people on this thread and what you guys go through. Can you please tell me what I can do to help? I already do donations and such for my Aunt with MS but that's everywhere and I know of nothing related to ALS.

Here are some organizations that could use some financial support.

• The ALS Association, both the U.S. organization and its Canadian counterpart.
  
• The Muscular Dystrophy Association (MDA) ALS division, particularly the Augie's Quest campaign. Buy a few Shamrocks at participating merchants during the month of March.
  
• ALS Guardian Angels. Stu Millheiser's one man quest to help all ALS families who have needs that fall through the cracks at other support organizations.
  
• ALS Therapy Development Institute.

Or you could just contribute toward the financial costs of the board here.

Consider Donating Today

 

[Alyoop]

Scandals, not sure what say, as it's pretty difficult to unwind all that you have written. It may be a good idea to break it all down ( after taking a deep breath).

Luckily except for the problems you are observing at night, which do not sound too grave, he is well. His day to day life is not being drastically effected by anything.

1. Some very minor sounding sensory issues.

He has had a physical showing no abnormality on pin prick etc. You are incorrect about the fact thatthis means no sensory Neuropathy. Sometimes an EMG will show abnormalities in the absence of supportive clinical evidence. What he has sounds like a bit of a nuisance rather than anything significant.

2. Unusual sleep pattern

Sorry but this does not sound too serious. The sleep study has thankfully shown no major issue to cause concern. Technicians may not be the Drs but are usually highly trained and perfectly capable of seeing an abnormality should there be one to find.

3. Bowel and bladder issues

These too are minor as they came right the next day. Could have been caused by anything. Gosh even I had a similar experience last week!

There is absolutely no reason why any one of these issues should be connected. When we get anxious about something and head for the Internet, it causes people to get way too introspective. We focus on each and every irregularity that our bodies throw at us. These things would normally go unnoticed.

The EMG no doubt will be to allay your anxiety and check for a neoropathy, that may be causing your husbands sensory issues. your husband shows no sign of a motor neuropathy.

I really feel that your anxiety may be rubbing off on your husband and is unneccesary. I am glad you have some treatment for it.
Be happy that all you have told us sounds very minor indeed. I would be more concerned that your husbands hypertension is going untreated because of his age. This leads me to believe that it must also be minor. I am telling you this because of experience. I would be dead now if I joined all the signs, symptoms and illnesses I have had over the last 18 months and mashed it together. In fact I would have ALS, MS, SLE and HNPP. And I am really not joking! I will just stick with the PLS for now, and I think that's way off

I hope you both get over this and can move on and enjoy your lives together

I forgot to add that your aunt will have primary progressive MS. This very rarely shows up on an MRI of the brain, where as the common type, Relapsing, remitting MS does.

 

[scaredals]

Thanks. I will look into these organizations!

Yes, my husband is well. I agree his sensory issues aren't that bad however the doctor was extremely concerned because the burning does get very painful and there have been times when my husband has had to put his legs in a tub of ice or stick them in snow (not normal). I agree, definitely not on any scale with ALS, but still a problem that the dr's are very concerned about. As for the sleeping, the doctor said that actually this is a cause for concern as well as his sleeping patterns are causing his insomnia and sleep deprivation which are causing problems and can be very dangerous. Just the other night he was so sleep deprived that he was completely disoriented and delirious (while awake) and remembered nothing of it the next day. This can be very dangerous to a person....again I'm not saying it's on the scale of ALS but it also isn't something to not worry about according to the doctor. He has nightmares so often that he can't sleep, which according to the doctor is not normal for an adult (he thought it would be from lack of oxygen or too much CO2 related to sleep apnea but so far the tech says no apnea, we'll see what the specialists results say in a few days) or he'll wake up from breathing through his mouth because his sinuses are clogged and he says the mucus drips to his throat and he feels it there and it wakes him (even though we use a humidifier). As for the bowel and bladder, he has a big problem with constipation but takes magnesium pills to keep him regular. Nothing like that has every happened to him before where he felt like he couldn't completely empty his bladder or bowel and then feel like his anal opening was so tight it wouldn't open to let anything through. Yet, you said you experienced it and you have a form of ALS and I've read other people on this site that have had problems with completely emptying bowel and bladder, or have had spasms of the pelvis area that have caused them problems. I guess I just assumed that it means it's related to ALS/PLS. I think his recent weight loss of 10 pounds in a month is anxiety (I hope) because I think he's holding steady weight now. However, and this is before we even went to the dr, and one of the reasons why he made an appt with the primary doctor to begin with, is he would lose his appetite and go like 3 days without pretty much eating anything (or at least hardly eating) because he said it bothered his stomach (but couldn't explain how, not nauseous or pain). I thought he had anxiety over something (this happened a few times over about 6 months) but he said nothing was bothering him.

I'm a truly hoping you are right about the EMG and the sensory nerves. It's just his lower extremities being tested, we have to go back for more EMGs on other areas in another appt with this dr. I'm not sure what classifies as a motor nerve symptom but he does have twitches (which I think are anxiety but could be wrong), his calves and arches sometimes get tight, he's had cramps in his arches (but the dr said it could be from his high arches), his feet/toes will involuntarily move while awake (not when he was in action but while sitting or laying down), heaviness feeling in his legs (tired feeling in them a few times too), heaviness and pains in chest, stiffness in back/hip/knee/neck, woke up with his neck hurting so bad couldn't lift arm because it sent a shooting pain from his neck through his shoulder blade and got numbness in hand (this went away)....I can't remember what else. He's keeping a log of every day at the dr's request. It seems like everyday it's a new symptom (not that most of them last but some do). It's enough to freak anyone out, I hate that he has to keep a log because it makes you more attune to it (when in other times you wouldn't think much of it).

And yes, we know my aunt has the primary progressive form of MS...but the dr said her case seems to be even more rapidly progressive than most. She got it in her 30's and is pretty much disabled at this point (I'd say almost to the point of ALS since she can't do anything for herself). It's such a shame, she was so young when it hit her, and it's heart breaking. I guess that's why maybe I'm a little more freaked out about my husband having neurological issues because I see what a neurodegenerative disease has done to my aunt at a young age!

 

[Lavender Lady]

That definately explains alot of your fears! I hope all goes well.

 

[Alyoop]

Scared ALS. Ms is a horrible illness, and for some people it travels at an alarming rate causing as you said ALS type scenarios. Your aunt has truely been one of the less fortunate. To top it all there is no treatment for PPMS. I have no doubt that is probably the cause of your anxiety level being so hign, as Lavender lady said. Also the keeping of a diary explains a lot. Its a perilous thing to be asked to do. I work with MS patients doing Clinical Trials and before that doing oncology trials. Most companies do not get the trial participants to keep any sort of diary anymore , due to the patients suffereing far more adverse events, than those not keeping diaries. They make us far too introspective. We notice the day to day pains and abnormalities that we are then forced to focus on. Things that would normally be cast aside. are dwelled on. I wish you the best with the EMG coming up and I hope they find the cause of the burning .
Aly