Does ALS hurt?

[bratpak]

Hi, I'm new here. I've been reading your posts for about a week now, searching for answers. I've had a deep aching weak feeling in my forearms and hands that has gotten slowly but progressively worse over the last six months. It almost feels like tendonitis sometimes. My tendons feel tight to me. I also have shooting pain from my calves into my feet occassionally. I'm tired all the time. My jaw, neck, shoulder and arm muscles frequently stiffen. My doctor has run every test in the book practically and everything comes back within normal limits. MS is not suspected (according to a Virginia Mason MS specialist). My creatine kinase was fine. My NCV's are normal. I have EMG's done on the 9th. I'm wondering if I'm barking up the wrong tree or if there's even a remote possibilty that this could be ALS. Did any of you who have been diagnosed experience pain as an initial symptom? Sorry about the rambling, but I can't stop thinking about this....thanks everyone.

[MtPockets]

I hope you can find the help you need here. Each and every case is different and just because you have a few of the symptoms does not mean you have the disease. The tests that helped me most were the EMG, nerve conduction study, swallow test, and finally as a last resort a muscle biopsy. As for your question about pain, yes I had severe muscle pain, others did not. As I said each case is unique. I wish you the best with your test results and come back anytime. I know there are many others who will help give you more information.
God Bless
AL:)

[bratpak]

Thanks for your reply. I appreciate any input. You are all very supportive here. No worries, I'm not going to use up my energy worrying over anything unless and until the doctor gives me a reason to. For now, I'm biding my time waiting for the next test. I've learned to adapt to the strange symptoms I've had; I just wish I knew what was causing it.

Thanks again :)

[MtPockets]

I know what you are going through. As with many of us on here it took couple of years for symptoms to develop to point I could get definite DX. But something in the back of my mind told me all along it was ALS, just hated to finally hear the Doctor verify it. I've had symptoms about 2 years and got DX May 15, 2006. Almost completely lost use of my legs and trouble swallowing is getting worse. But everyday above ground is a GOOD day.
May God Bless,
Big AL

:)

[bratpak]

That's sort of how I feel...in the back of my mind I know it's a real possibility and that's what scares me. The pain and fatigue aren't the only symptoms I have; I have frequent (almost constant) stiffness in the muscles of my arms, shoulders, neck and jaw. And I get twitches all over my body. Most are simply annoying; others are strong enough to make the limb move slightly. My hands feel clumsy and shaky. I have EMG's on the 9th, so I guess I'll know more then. I noticed that several of you say you had 3 or 4 sets of EMG's before DX. Is that because they were normal at first? or was the doc just tracking the degeneration thru a series of EMG's? Just asking cause this is the second time I've had them, but the first time was only on one limb (my left leg - normal); this time they are doing all four limbs because my arms are my primary problem right now. thanks for all your help. It's nice to be able to talk about this with people who understand. My husband is in a sort of denial stage about what could be going on, even though it's been slowly progressing over the last year (first noticed burning sensation in one arm last Aug.) So thank you for giving me an outlet and precious information. I admire you for your strength thru such a terrible disease. you are inspiring. :)

thanks
Cyndi

[marlo]

[quote=bratpak]That's sort of how I feel...in the back of my mind I know it's a real possibility and that's what scares me. The pain and fatigue aren't the only symptoms I have; I have frequent (almost constant) stiffness in the muscles of my arms, shoulders, neck and jaw. And I get twitches all over my body. Most are simply annoying; others are strong enough to make the limb move slightly. My hands feel clumsy and shaky. I have EMG's on the 9th, so I guess I'll know more then. I noticed that several of you say you had 3 or 4 sets of EMG's before DX. Is that because they were normal at first? or was the doc just tracking the degeneration thru a series of EMG's? Just asking cause this is the second time I've had them, but the first time was only on one limb (my left leg - normal); this time they are doing all four limbs because my arms are my primary problem right now. thanks for all your help. It's nice to be able to talk about this with people who understand. My husband is in a sort of denial stage about what could be going on, even though it's been slowly progressing over the last year (first noticed burning sensation in one arm last Aug.) So thank you for giving me an outlet and precious information. I admire you for your strength thru such a terrible disease. you are inspiring. :)
thanks
Cyndi (quote)


Hi Cyndi,

Sorry you have a need to be here,, but hope we can be of help. I had 2 EMG tests mostly because the neuro. was not going to release me to go back to work due to the disease, so i would have to file for SS disability. He felt i most likely would have to have a second opinion in order to get it. Both of my tests showed abnormalities.
I wish you well ,, in your journey.

Love and Prayers
Marlo

[Al]

Hi Cyndi. I was getting muscle cramps in my legs at night before the fasciculations started. The cramp would hurt but after it went away there was no muscle pain. We're all different. I'd try not to worry (not easy) but stress can make any symptoms worse. Welcome to our forum and hope you don't have to be here long. Meaning they'll come up with another diagnosis other than ALS. Good Luck. AL.

[bratpak]

Well, I had EMG's today......ouch. The doctor doing the test said I have very brisk reflexes and he saw fasiculations on the EMG, but "not enough to worry about". He was going to make some recommendations to my primary doctor in his report about some lab work I should have done to check for other conditions. I haven't seen the report yet (I work for my primary doctor :) ), but I'm sure it'll come in tomorrow. Something I found interesting is that the EMG doctor said that ALS has to be pretty far progressed before the EMG can really be used to diagnose. He said I should have them repeated in 6 months to a year, depending on whether my symptoms progress, stay the same, or go away. I hate the waiting game. I just wish they could say for sure that it's not ALS, but I guess at this point it can't be entirely ruled out. Does anyone have any suggestions as to what other conditions can mimic ALS that we can work on ruling in or out? The MS specialist said her suspicion for MS is low; lyme was negative, lupus panel negative, B12 is normal, CPK is normal, no diabetes. Any other ideas?? Thanks for your help.

Cyndi

[saras_daughter]

with my SUGAR MOMMA, there were times the pain was terrible, after the disease started taking more of a toll, but like the others say its different in every one.

I suggest getting 2nd and 3rd opinions on everything. then I would build from there.

Please keep us updated, k, friend?

[Barbie4]

My friend had a spinal tap and an MRI to rule out other causes,when she was being diagnosed, Have you had those tests yet? She didn't have pain, but her emgs came back positive, and she only had symptoms for about 4 months.

I hope it is not ALS and that you find out it is something small and curable. I truly do.
Stay as strong as you can. Good Luck.

Barbie:)

[bratpak]

Thanks everyone for your input. Yes Barbie, I had spinal tap (a miserable experience as it took the radiologist 7 pokes to my spine to finally draw fluid which caused spinal leak and terrible spinal headache that took an ER visit to get rid of; I don't think he was a very experienced radiologist!) I've had 2 brain MRI's, plus C-spine and T-spine MRI's; all were normal. I saw an MS specialist at Virginia Mason who said her suspicion for MS is low. I'm waiting for the EMG doc to send his final report to my primary doc, who will probably send me back to Virginia Mason, this time to an ALS specialist.

You said your friend had positive EMG after only 4 months of symptoms; at the time of her EMG was it pretty obvious that something was really wrong? e.g. had she lost the use of a limb, or have trouble speaking, etc.? I ask because the EMG doc told me that by the time the EMG is able to dx ALS, it is pretty obvious clinically. Just curious; I know that ALS strikes everyone differently. I just wish they would tell me No, you don't have it!! Until then, I keep very busy and try not to let my twitching and pains affect me. I wish all the best to you and your friend. Thanks again for your reply. :)

Cyndi

[Barbie4]

Hi Cyndi:

Yes, she was having trouble with her right leg. She was a runner and she noticed she couldn't keep up anymore and that her leg would drag a bit. she also noticed that it would take her longer to write.
She experienced the same awful headache after her spinal tap. It was so terrible, she was told to lie flat on her back for a few days right after she was given this awful diagnosis.

My best to you Cyndi. I will be thinking positive thoughts for you.

Barbie :)

[MtPockets]

I'm hoping for the best for you Cyndi. I had all the spinal junk but was not far enough along at the time for anything to show up I guess. A year later after muscles really began to jump the EMG showed muscle activity everywhere they poked me, which seems like everywhere, haha. But the next test they did was a muscle biopsy of the major muscle in the right thigh. When it came back May 15, 2006 they said there was definite ALS due to obvious nerve damage and other indicators???
Have many other people had an ALS DX confirmed by muscle biopsy? Just curious since I do not hear others talking about this much.
I had bunch of other symptoms, but Neurologist said the Biopsy left no doubt. ALS
Anyway Cyndi I wish you the best,
God Bless,
Big AL
:)

[Al]

I asked my neuro about biopsy and he said it's pretty invasive and there were enough other things going on that he was pretty sure about the dx. I think most neuro's think that way and you had some other issues before you started with the ALS symptoms which might have clouded your picture Al.

[MtPockets]

I had and have a lot of other issues, hahaha.... Just kidding. The biopsy was pretty invasive and took long time to heal, but it kind of shut the door on my thinking it was anything else. I did not know if others had gone thru this for final confirmation or not, or was I just special......weird, different, you know what I mean?
Anyway have a great weekend everyone and God Bless.
Big AL
:confused:

[rbtro]

Hi All,

Yes I had a muscle biopsy of the left thigh. Had no trouble, but this was about the same time that I gave up the walker and put in a stair lift. I was being treated CIDP up to this point. I had had a spinal tap, MRI's of the brain to tail, EMG, and NCV(Oct and March). I was continuing to get weaker despite the IVIG therapy and High Dose Prednisone. The muscle biopsy showed denervation. My neuro sent me to Johns Hopkins for a second opinion. The Dr. there explained that it was a diagnosis by exclusion. He said he could gaurantee that I did not have CIDP. He conducted another EMG/NCV and said it was much worse than he expected. He said there was no definitive test for ALS. We will say you have ALS and continue to test hopefully we will find something else. He said I have a Motor Neuron Disease with the worst case being ALS. He then introduced me to the director of the ALS Clinic. She explained to me what to expect and set me up for the next clinic. She gave me several handouts and a list of links for info. This forum being one of them. I have since joined several others and have learned much about this disease. I continue to take one day at time and I am adding to my equipment to deal with the increasing handicap. So far I am affected only in the LMN my legs, trunk, arms and hands. I pray that it stays there. I should have my Power Chair sometime this week. I also have put a deposit on a ramp van. I am hoping this will improve the quality of my life. I have been work and house bound for quite a while now. I am hoping to be able to get out more with the new toys.

Your friend in suffering,
Rich

[MtPockets]

I've only had my power chair a couple of weeks now and it is a blessing. I get to walk the dog again now and go shopping "ugh" with my wife. It does allow me to do a lot of things now that I couldn't before. I hope you get yours soon.

I stumbled upon this site with a search engine, I wish more doctors and hospitals would give us more information when they give us the big DX. Like refering us to support sites and stuff. Kinda not nice to say oh you have ALS, see you in 30 days. Bye! A lot of us without the internet would be lost wondering what the heck was going on, much less the support we get here.

To everyone who had or has anything to do with setting up or maintaining this site a big HUG and Thank you. You are making a big difference in our lives and words can not thank you enough.

God Bless,
Big Al
:-D

[Al]

Thanks Big Al. That would be David and myself and couple of other behind the scene helpers. Glad it is appreciated. AL.

[So Sad and Lonely]

Hey,

Just need to vent. I have not got a grasp on how all this grief work is suppose to go. I just know the pain in unbearable losing your only child after 20 years. It stills blows my mind that she is gone. Last summer this time she was here and fine. Als only took 5 months to take her from me. I am so anger sometimes and think is so unfair. Is there anyone out there who is griefing from losing a young person to AlS. I would really like to connect to someone who understands kinda what it is like to lose someone so young to ALS.

Please if anyone is out there can you please get back to me or if there is anyother sites that you know that would help I would appreciate it.

Thank you,

So Sad and Lonely