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novamv41

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Hello, this is my first post.

I am a 26 yo male, law student, and over the past 3 or so months I have gone through an extremely stressful period with respect to my health.

I will admit I am worried about ALS, as well as many other neurological conditions, and will also admit to being a slight hypochondriac. But I've read many threads on this forum and felt that the people on this site defy your typical internet forum. Very kind and insightful crowd, and I wanted to ask if anyone could figure out my situation.

Just writing everything out that has happened may take a while, I will try to be neat about it.

It started in mid-April when I woke up one night with pain in my left arm (upper arm, near the bicep). The next day I had tingling and numbness in my left arm, mostly on my hand. This lasted for a week, maybe two, and I was going through finals, plus my parents were going through a divorce, and this was a very stressful time.

There was also slight tingling in my left foot and possibly the left side of my face (I may have imagined this last bit)

In those two weeks, the numbness finally went away, and the tingling was less often. The pain in my arm came and went, but there was pain in other parts of the body too.

Naturally I stressed over manythings, including MS and a brain tumor. My maternal grandfather had MS so its always been a worry.

I also developed a slight constipation over this time which has since receded.

I went to see a neuro in NYC where I went to law school, and he said he wasnt too concerned but set me up for an MRI and EMG on my left side. MRI came out clean, major relief. But then I started worrying about ALS. EMG came out clean as well, but we only did the LEFT side. Neuro didnt give me a diagnosis at all, saying "these things happen." He thought maybe I irritated a nerve.

At that time I also had a litle difficulty seeing with my right eye. Things in the distance were blurry. When I got home from law school after finals in mid May I went to see an eye doctor who was worried about my symptoms and gave me a full eye exam. He didnt see any neurological issues either, and he said that due to the stress I had developed a ciliary spasm and it might clear up eventually. Two months later it has not yet.

Over the next month, I didnt have any major symptoms but I had a lot of neck pain and shoulder pain so I convinced myself I had been sleeping bad (my bed in NYC was awful). However, I would sometimes wake up in the middle of the night (and still do) and my ring finger and pinky would be very numb and tingling. It would go away after a few minutes.

A couple of weeks ago, I began feeling these cold sensations on my body. First in my hands, and then on the back of my legs. It was as if somebody was splashing water on me. This happened the morning of a flight, and I always get nervous before flights, so I first accredited it to stress. But it continued for a week or so while I was in Florida to see my mother.

I came back from Florida, and the cold sensations were mostly gone, but I would get a few of them randomly.

However at this time my right arm and hand became feeling very weak. It just felt weak. I guess this would be described as subjective weakness, but it still seems weaker than my left hand when I try to do things (granted I am left handed.)

I then came to London for a month, and almost immediately upon arriving I started having tremors. I originally attributed them to tiredness from jet lag, but they are still present. It seems as if they are all over the body, but it is most pronounced in my right hand. The weakness feeling (and actual weakness perhaps) has been in the right arm still now for about a week and hasnt left. This is the opposite arm from where the tingling and numbness originally began three months ago and where I had the EMG.

Both hands cramp after doing anything physical, to different extents.

It has been a long period and I never really worried about my health before all this, but now it seems that I get a new scary symptom every week or two. Some go away, some, like my eye, seem to stay.

The only other thing worth mentioning is that I had shingles (herpes zoster) about 8 months ago as soon as I got to law school. Doctors said it was stress related. It cleared up fast but I still have slight scars.

No twitches as of yet, except for the occiasional ones in odd spots that come and go, but I am certainly attune to all the wierd things my body does and get the feeling I'll be twitching on my right hand soon enough...

Does anyone have any idea what this might be? Is it all in my head? The weakness and the tremors and even the pain have me scared of ALS, the other stuff is just wierd.

I am sure I left some stuff out, its been such a long nerve-wracking time.

Thank you so much for your responses,

god bless,

matt
 

Fleetlord

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Alot of what you've got going on sounds like anxiety...I hate it when people tell me that, but...it's a possibility..

Did the MRI show anything with your back or neck? Any degeneration of discs?

Have you had your B12 levels checked? Do you have heartburn and take anything for it?

Low or low normal B12 can cause all kinds of neurological stuff...
 

awieleba

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HI Matt,

Just what I know. My dad has an autoimmune disorder called sarcoidosis. It was serious before they could figure it all out. he ended up in the hosp. because all his joints swelled up and he could not breathe. This condiotion does not stay in your joints, as he has no joint problems It is in his lungs. He was put on steroids and got it under control. he lost 25% off lung capicity and sleeps with one of those breathing machines at night. MY point is,
proir to this he had shingle's. So the shingle's first then this other thing. He was told that shingles were from stress. He was EXTREMELY stressed as him and mom were considering a divorce (they stayed together:)) and he had issues at work. He was stressed. The doc also told him that his sarcoidosis can come back if he is under too much stress. When he is stressed, he feels soooo bad.

My point is that stress can cause strange things. In my dads case all this happen when he was under stress.

your symptoms dont really seem like als at all. 10 yrs ago I was mis-diagnosed with MS. I had alot of what you said-vision, tingling, subjective weakness. It was not MS, and my symptoms went away. MInd you my mri was abnormal with lesions in the white matter. we think it was hormone related in my case. I can tell you this---the issues that I Have now, dont even compare to what I felt in my body then. I have constant twitching, muscle jerking, thinning limbs, true muscle fatigue (thighs shake on exercertion). Voice going hoarse. can not play tennis anymore.

I tell you this becasue 8-10 yrs ago I felt like a hypochondriac and i thought forsure that I had ms. I wasted soo much time focusing on this. My symptoms were there, but they did not stop me from doing anything (ie. working out and being active). I wish now that I did not do that-it was a waste of time. Here I am today with something to really worry about ( i cannot work out and get tired just from holding my kids). If you can work out and this does not limit you physically, try not to worry. Take it from me! I have had a ton of health concerns. (see my story). I am 36 but was 26 when that ms thing went down.

I would think this also sounds more like ms (not saying you do!), and that can be treated now a days--look at montel williams. There is more hope with MS, so maybe you should worry about that instead of this if you need to worry? Als from what i have learned, does not have sensory issues. but go to specalist if you need to be assured.

Take care!

April
 

gbrown

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Strange Symptoms

Matt:

The symtoms you are feeling are not ALS symptoms. I have ALS and have never had any pain or tingling. I agree with April, if you are still worried, go to a Neuro that specializes in ALS and get an opinion from him.
God Luck,
Gordon
 

Jennifer51

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clutching at straws?

Matt:

The symtoms you are feeling are not ALS symptoms. I have ALS and have never had any pain or tingling. I agree with April, if you are still worried, go to a Neuro that specializes in ALS and get an opinion from him.
God Luck,
Gordon

I had slurred speach and some swallowing issues, which started in Jan 08...but we were overseas, so left it until we got back home. Saw a neurologist at the end of March 08. He said immediately, before tests, said that he thought I had bulbar onset MND. Did all the tests, MRI, blood tests, EMG, LUmbar puncture, all within about 2 weeks. So he says that the EMG came back as ...concrete evidence.... that I have Pseudo bulbar motor neurone. Put me on Riluzole immediately. I noticed a benefit within hours of taking the first pill, which one neuro said was good, but my main neuro said was rubbish, I couldnt possibly have noticed anything. The speach therapist also agreed there was a slight improvement in my swallowing, she agreed the pill was beneficial for me. I have been getting lots of twitching, big and small...ALL over my body..ok so far, everything fits...
BUT I have been getting lots of pain, not just from cramps, my hips and legs are SOOO painfull sometimes at night, and my arm muscles and elbows ache a lot, which does not seem to be part of all this rubbish. Also over the past few days, I have been getting tingling in my hands on on the bottom of one foot. I know, I like everybody else, would like to find an alternative diagnosis. Saw my main neuro the other day for liver function tests, told him about the pains and he just ignored it...He is more concerned that HE is RIGHT. I did have a second opinion who agread with the diagnosis but only on the basis of what he had been told by the main one...although he did examine me. clutching at straws to find something else.......Any thoughts
Jennifer51
 

fiddleplayer51

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Jennifer,
I'm so sorry for your pain. Are you still exercising like mad?
I replied to your post under the scared to death thread where you mentioned that you were "exercising on a treadmill and exercise bike as much as you can to fight the whole thing". Here's some of what I posted to you:

"I would think you should lay off the treadmill and exercise bike. If you are experiencing cramping and pain in your hips and your legs are now weak, I would caution you that there may be more involvement now than when you had your EMG in March. If there is more involvement, "exercising as much as you can...to fight the whole thing" is one of the worst things you can do. It sounds as if your body is telling you something.

My husband had bulbar-onset ALS diagnosed this past April. He is 65. Prior to that time he'd been an avid hiker and used our elliptical exercise machine religiously every day. He began experiencing quite a bit of pain in his hips and stiffness/weakness in his legs, but like you, continued to use the machine. After his diagnosis we learned that this type of exercise to such an extreme is the worst thing he could do. Little had we known prior to the diagnosis that the muscles in his legs are not getting full nourishment because of the neuronal death caused by the ALS, and that's why forcing them to work is very detrimental."

Sorry to repeat, but I'm really concerned for you. Please take care and I hope you can get answers and relief.
All the best,
Jane
 

minava01

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Hey this is pretty funny but I am about to go into my first year of law school, and are going through the exact same things you are.. Almost the same span of time too. I think the important thing to think about, after talking to all of the members of this site, is that if we are able to function normally in everything that we do (I teach tennis 5 days a week and exercise) then we should be encouraged that nothing is seriously wrong... plus our age works for us. The scary part is I have this much anxiety now, so I'm wondering how bad I'm going to be in school. I am getting over my worry about this disease for the time being, and I hope you do the same too. We should be fine.

Good luck with the rest of school. Practicing law in New York will be an adventure. I'm starting at Villanova this fall, and hopefully sticking around the Mid-Atlantic area.

Take care
 

Jennifer51

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Jennifer,
I'm so sorry for your pain. Are you still exercising like mad?
I replied to your post under the scared to death thread where you mentioned that you were "exercising on a treadmill and exercise bike as much as you can to fight the whole thing". Here's some of what I posted to you:

"I would think you should lay off the treadmill and exercise bike. If you are experiencing cramping and pain in your hips and your legs are now weak, I would caution you that there may be more involvement now than when you had your EMG in March. If there is more involvement, "exercising as much as you can...to fight the whole thing" is one of the worst things you can do. It sounds as if your body is telling you something.

My husband had bulbar-onset ALS diagnosed this past April. He is 65. Prior to that time he'd been an avid hiker and used our elliptical exercise machine religiously every day. He began experiencing quite a bit of pain in his hips and stiffness/weakness in his legs, but like you, continued to use the machine. After his diagnosis we learned that this type of exercise to such an extreme is the worst thing he could do. Little had we known prior to the diagnosis that the muscles in his legs are not getting full nourishment because of the neuronal death caused by the ALS, and that's why forcing them to work is very detrimental."

Sorry to repeat, but I'm really concerned for you. Please take care and I hope you can get answers and relief.
All the best,
Jane
Thank you for the reply.... I guess most of us are in the dilemma of....I dont want to give in to this and just sit in bed all day, so what can I do, and that terrible fear of wanting to maintain what we have for as long as we can, so feeling that you have to do SOMETHING.... My neuro did think I was a bit stronger when I saw him last week, so its either the excercise or the plain pig headed nature I have. I am doing about half an hour a day, most days, but not all, at the moment and not fast...and that does seem to help me not feel SO stiff. I know deep down that there is much more involvement now than when the EMG was done... I was not getting twitching then, and have had some VIOLENT twitches in my upper left leg since. Ho hum, plod on and take one day at a time...but it plays havock with trying to plan some kind of a future We have homes in Florida and want to plan a probable last big family holiday with all the kids and grandchildren....plus we need to get there to sell up...not a good time. Having been told anything from 6 -36 months, it is very difficult...but thats what we all have to deal with. Love and thoughts to EVERYONE here....
 

awieleba

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To the two laywers,

my guess is that when you start school, you will be way to busy to focus on this!

MINAVA01-

there are alot of pals that live past 36 months! eveyone is different with thier progression. Hold on to the people that have lived alot longer and are living it to the full.
Like quadbliss (we all can learn form him). 10 years! A friend on her told me about a young mom living with als, its been 4 years and she can still take her kids to target and bake cookies.( check her out at askaboutamiee.com) Seeing her strength and still being a mom with this disease has helped me.

take care and I wish you the best.

April
 

fiddleplayer51

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Hey Jennifer,
Is home in the UK or Florida? Just curious! :?:
I hear what you're saying about some exercise helping to ease the stiffness. My PALS is very much that way, and even now finds that moderate walking is helpful. He continues to walk in our park once or twice a day for 20-30 minutes each time. He can't sit for long periods because he gets so stiff. He has to get up and move around.
It's great you're pig-headed! That's what you need to fight this thing! :mad:
It's just that you have to know when to quit...;)
Good luck with selling your homes. Maybe you'll get lucky! :-D
Peace,
Jane
 

MtPockets

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Pain with ALS?

Just some information about the pain issue with ALS.

I was diagnosed May 2006 with limb onset ALS. The only pain I had for a long time was related to muscle spasms that we call in the south Charlie Horses. When the muscle would go into those it really hurt.

Then about 9 months ago I started having severe pain in my legs at night. I would wake up screaming and crying the pain was so great. It felt like someone had taken a razor blade and cut to the bone all the way down my leg. No, it was not sciatic pain. I have had that for 19 years. The pain felt like it was in the bone itself. I was on several meds for pain at the time and nothing seemed to help.

The state I was in as far as progression at the time was, I had lost use of my legs and would have to move them with my hands at night to reposition them. I also was experiencing swelling in the legs and feet and had to wear pressure stockings to control the swelling.

This lasted about 6 months and went away just as quick as it had appeared. None of the Doctors had any explanation as to what was happening. I have heard from several other forum members who have had similar experiences, but it seems that pain normally is not associated with ALS symptoms.

Just wanted to let you know we are all different and so are the symptoms.
 

novamv41

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Thank you for all the comments, I will be seeing a doctor when I get back to the states and hopefully we can clear things up. I am still not sure what is going on with me, but some days I feel fine and others (like today), just off. I did do an MRI of the neck (with the brain), but no one said anything about that, and no MRI was done of my spine or back, but I do think that one should be done.

Minava, best of luck with your 1L year. I did my undergrad at Villanova (hence the nova part of my log on), and loved it. For me, the stuff happened in April, which totally wrecked me on finals (in fact my second semester was a full grade point lower than my first), but I am hopefully getting over it now.
 

fiddleplayer51

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Wow Mt, that sound awful! I'm so glad it ended.

One month before my PALS' diagnosed he woke up with excruciating pain in his right ankle. Even the slightest touch was excruciating. Even the sheet on it hurt. Needless to say, he could not put any weight on it. There was absolutely no swelling whatsoever. The next day there was some swelling, but the pain had eased up somewhat. When the docs have been told about it, they have no explanation for it. It has not recurred.

His is bulbar-onset, and his limbs progression has been from right to left: rt. foot/leg and rt. hand; now lt. foot and leg are going. We don't know if the rt. ankle pain was somehow indicative of what was to come, but thankfully so far (knock on wood) he has not experienced such pain in his left ankle.

It's amazing how we're all so different. Like I've said before, no wonder they haven't found causes and cures...although they better get crackin'!
Peace and take care,
Jane
 

ladyk

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Jane

The better get crackin comment just cracked me up. I completely agree! It is really no wonder there is such a hard time getting any diagnosed since everyone has such different stuff going on. My issues started with intense chest pain, was sure it was heart attack, then in a few days I swelled all over the left ribcage and in sternum. That was a year ago and I'm still swollen but other pains and twitching are now more bothersome that the inital stuff. Anyway, best of luck to all stressing and waiting for diagnosed and relief, I'm with you and praying for you. K
 

awakinggiant

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ladyk

When you said your first symptom you noticed was chest pain, was it the ribs or what and was it sensitive to touch? And has anyone ever expierienced or heard or muscle cramping of the head and neck leading to massive temple pain and even face pain like TMJ. I don't know what's worse, Fatigue and shortness of breath or the PAIN
 
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