Need some good DU Vibes - May have ALS(Lou Gehrig's)

[RamboLiberal]

Neurologist thinks I may. So far I think his exams are a bit cursory. I have many of the symptoms but I think even with MRI results showing some problems C5-T1, though he thinks not enough to explain symptoms, that they are missing something. And my upper back at bottom of neck & now neck have been in pain everyday since January. Pain started before right hand arm and now left hand weakness atrohy. Also some walking gait & balance problems now. I am going to consult a neurosurgeon & another ALS clinic if need be.

I think I have more symptoms of cervical stenosis.

I have no close family or caregiver so I'm damned scared & alone.

Appreciate any good DU vibes and any advice especially anyone who knows about ALS.

[EFerrari]

1. So sorry to hear this. Keep us posted.

:grouphug:

[Liberal_in_LA]

2. hoping for the best for you. n/t

[ananda]

Great good luck to you!

It's weird because the Lou Gehrig movie was on TMC yesterday and I was
looking them on on Wiki.

I hope you don't have ALS, but if you do, I'm also hoping that you can live
with it.

[alsame]

3. Good vibes and

a hug for you :hug:

[hlthe2b]

4. Oh, my.... I absolutely hope they will be proven wrong...

Definitely get those alternate opinions. And, yes, most certainly, I will be sending you all the best vibes, healthy thoughts, wishes and hopes possible.

You have a DU family, RamboLiberal. Don't forget that. Fingers firmly crossed and sending healing thoughts. :hug:

[villager]

29. ditto ditto ditto.....

Be well, be wrapped in healing wishes, and check back in here as often as you wanna...


Take good care, RamboLiberal....

[spanone]

5. good vibes department now open....

:toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock: :toast: :party: :smoke: :hi: :thumbsup: :grouphug: :hug: :pals: :fistbump: :yourock:

[CaliforniaPeggy]

6. My dear RamboLiberal...

Get all the info you can from people who know...the neurosurgeon and the ALS clinic are great places for that.

Hugs to you, sweetie...

Thank you for your courage in telling us what's happening...

And do keep us advised, OK? Many, many of us care about you.

:hug: :hug:

[Botany]

7. I wish you well

[progressoid]

Aw damn.

Keep us informed. We're all here for you.

:grouphug:

[FLAprogressive]

8. :( Please keep us posted.

:grouphug: :hug:

[Horse with no Name]

9. Sorry you are going through this.

I hate that you are going through it alone. If you need a friend, you can pm me.

:hug:

[ScreamingMeemie]

10. All of my best wishes and good health vibes.

Get a second opinion, and a third if need be. You are not alone. I promise.

[tblue]

11. Oh, RamboLiberal, I'm sorry. Check this out:

Study finds pathway to ALS cure
http://abclocal.go.com/wls/story?section=news/health&id=8320623

[onestepforward]

12. Sending good vibes to you

and lots of hugs
:hug:

[Warpy]

13. The good vibes are that he's a nitwit and you don't have it

because there is nothing good to say about such a hideous disease.

Do consult a neurosurgeon. If the symptoms are in your hands and/or feet, cervical spondolytic myelopathy is a possibility. If the symptoms are more central, like difficulty swallowing and a reduced gag/cough reflex, then the likely culprit is ALS.

[RamboLiberal]

48. Symptoms are hands and feet

Scheduled to see a neurosurgeon Thursday.

[Warpy]

49. Good, I think that's where your best bet for relief probably lies.

ALS can start centrally, with things like swallowing and progressing to breathing, or peripherally, from the extremities up and inward. The former kills a lot faster.

However, you have known compression on your cervical spine, so it doesn't have to be ALS. It could just as easily be my semieducated armchair diagnosis.

[MineralMan]

14. Get a real solid diagnosis.

I'm sorry you have to go through this process at all!

[pinto]

15. Take care. 2nd and 3rd opinions may not only be useful but reassuring.

Hang in there. :hi:

[Lydia Leftcoast]

16. Get as many opinions as you can and if the news is bad

make arrangements for future care NOW in consultation with whatever charity is concerned with ALS. (A friend of mine with MS has found the MS Society to be extremely helpful in navigating the options for treatment and financial assistance.)

But here's hoping that your doctor is wrong.

[sfpcjock]

17. but maybe you don't, too.

:grouphug: :yourock: :grouphug: :yourock: It's best to stay positive even if the report from this doctor doesn't seem good at the moment :)

[Hope66]

18. so sorry RL...

I don't know too much about ALS, but I was diagnosed with MS in 2003. I was a rather long and sometimes frustrating process as MS is a diagnosis of exclusion. I'm not sure if that's true for ALS or not.

When I was diagnosed and began to tell people I remember one person's perfect response...she simply said, "That sucks." That pretty much summed it up for me. She has MS as well, so she was well aware of how horribly sucky it can be.

So, RL...I'm so sorry this has happened to you and really and truly, that sucks.

Take good care of yourself,
Hope

[livetohike]

23. Welcome to DU!

:hi:

[RamboLiberal]

44. ALS same - diagnosis by exclusion

And I guess from what I read EMG results.

[polmaven]

19. Good vibes headed your way!

:hug:

[Surya Gayatri]

20. Sending caring thoughts your way...

Keep the faith that it will all come out OK in the end. SG

[Lone_Star_Dem]

21. Good vibes for you and some hope, too.

My friend was told she may have ALS due to symptoms she was suffering. After further testing they were wrong. I don't remember what it's called, but she has a blood condition which is treatable.

[madmax]

22. Get a second opinion

then get a third and if you have any doubts get a forth. Question everything and get copies of ALL tests.

:hug: Good vibes my friend, I wish you well.

[livetohike]

24. Sending good vibes immediately!

:hug:

[catbyte]

25. I'm so hoping it's not ALS. Please let us know.

[Rex]

26. Good vibes on the way!

:hug:

[catbyte]

27. One more thing, if it is, feel free to contact me. My dad had it.

[mainer]

28. Pain not normally associated with ALS

I agree that your upper body symptoms sound a lot like radiculopathy from a compressed nerve in your neck. I had pain, weakness and atrophy of my left hand. i also had a few muscle twitches of the left arm. It was all due to a cervical spine problem. Surgery fixed everything.

I'm not sure about the gait and balance problems, though.

ALS is a scary diagnosis. I hope it's something else entirely.

[RamboLiberal]

32. From research gait and balance problems are symptom

of cervical problems lower C sections like C5-T1.

[mainer]

33. Certainly can be explained by spinal issues

like spinal stenosis, which afflicts many older patients.

This seems far too early to be calling it ALS.

[uppityperson]

30. I posted an article recently on ALS, here's link to it. Good luck and hope it isn't.

http://www.futurity.org/health-medicine/cause-of-lou-gehrig%E2%80%99s-disease-found

http://www.democraticunderground.com/discuss/duboard.php?az=show_mesg&forum=222&topic_id=108887&mesg_id=108887

[Arugula Latte]

31. I am sending positive thoughts your way and hoping it is not ALS.

:hug:

[MissDeeds]

34. Sending good wishes and warm thoughts your way, RamboLiberal

I know it is so hard to wait for a diagnosis. I just wish doctors wouldn't throw out worse case scenarios until they know what's going on.

For what it's worth, twenty years ago, a doctor told my brother he 'might' have MS. He didn't. A few years after that, the same brother went to the hospital with severe respiratory problems. He was put in quarantine and we were told he 'might' have Legionnaires' Disease. He didn't; it was pneumonia. Soon after I started teaching at a local college, one of my students came to me in tears and said the doctors said her new husband 'might' have AIDS. He didn't.

Just keep strong and reach out to us when you need a friend. We're here for you.

You're in my thoughts.

:hug: MissDeeds

[joeybee12]

35. KNR and good vibes coming your way!

:grouphug:

[movonne]

36. Go into the health forum and about haft way down there is an

article on a breakthrough on ALS...maybe you can find something interesting on there...

[DevonRex]

37. We are all here for you. Vibes and prayers are coming your way. Nt

[bowens43]

38. don't jump to any conclusions....

I was told by a Neurologist that I may have ALS. My symptoms included weakness in by right ankle and muscle twitches in my legs and arms. I was extremely freaked out.

That was in 1983.....

there are a lot of conditions that can cause these symptoms. I know it's difficult , but try not to dwell on it and stay away from google until you know more.

[RamboLiberal]

39. Yeah Dr. Google is good and bad

Led me originally to suspect ALS myself and be freakin' in July but also to question cervical stenosis/spondlyosis since symptoms seemed to be pointing more to that.

[blm]

40. will be thinking of you, kiddo

.

[RamboLiberal]

41. Thanks to all for the support, hugs & vibes - trying to work

Yeah right! Not my most productive day.

Probably be asking for lots of advice. For instance getting SSI. How and when to start. I'm almost 59. If I could wait till 67 the info letter SS sent out said I would get around $2200 a month. Any idea what SSI would pay now?

[Change has come]

59. SSI is $674.00

Sometime Medicare is an option but it's confusing how to qualify. Have you ever seen a Chiropractor? A lot of people think they are kooks, but a Chiropractor greatly reduced my decades long lower back problems.

With DU, You're never alone. :hi:

[RamboLiberal]

65. I think I meant SSIDI

[wovenpaint]

42. Sending you reiki vibes as well as DU vibes

for healing and comfort.
And-best wishes as you get all this checked out.

:hi: :hug:

[OhioChick]

43. I wish you the best..........

Seek out a 2nd and 3rd diagnosis. :hug:

[mainer]

45. Wait till you get your EMG.

If you haven't gotten one yet, you should.

[RamboLiberal]

47. I had one of the weakest arm

I really don't know know the results but guess it points to ALS as possibility. Darn docs should give patients copy of records. End of month for leg EMG. After that I'm going to request a copy of all my medical records. I am seeing a neurosurgeon Thurs to see if possibility cerivical stenosis or other cervical problem.

[uppityperson]

71. Having 1 weak arm also points to cervical nerve impingment

Muscle twitch in themselves all the time, even when you are resting and they are at rest. It is what keeps muscle tone up. Having a pinched nerve can slow that down and your general muscle tone of 1 arm (for instance) can be much weaker than the other. I've dealt with people with 1 limb being much weaker than the other, even when it is their primary use limb because of this. ESPECIALLY if it is 1 arm, not both.

c5-t1 is where those nerves are and could be this issue. Reading through this thread, looks like your main symptoms are hands/feet, not other neuro issues.

Word of advice, beware Dr Google. I have given myself all sorts of nasty diseases by researching stuff. I had a job yrs back researching and writing patient ed info that you find on the internets, it was quite interesting to research things, but also amusing how much I could fit into.

That said, good luck and don't freak out too much, just some.

[lunatica]

46. Sending positive vibes to you

And hoping it isn't anything serious or incurable.

[snagglepuss]

50. Good vibes, thoughts and prayers being sent your way.

:hi:

[pacalo]

51. I'm so sorry, RL.

There are support resources for those without family or close ties & the hospital will direct you to the help you need.

I wish you the BEST.

:hug:

[polly7]

52. Hoping the news is better than you fear ..... take care of yourself and

get good support to go through this with, having someone there to fight with you for the latest tests and specialists means so much.

[tblue37]

53. A friend of mine, only 44 years old, has just been diagnosed

with a progressive neurological disease that is not ALS, but that has some of the same symptoms. For a long time they were testing for MS and ALS.

His disease is called Spinocerebellar Ataxia Type 3 (SCA 3), or Machado-Joseph Disease. He went through many frustrating years of testing before they arrived at an accurate diagnosis. Both ALS and SCA 3 are terrible diseases, and I certainly hope you do NOT have either one. But now that he has been diagnosed, they can at least treat his symptoms and perhaps delay the progress of the disease, though they cannot cure it.

If your doctor has not tested for SCA 3, perhaps you should suggest it, just in case. As with my friend, the sooner you have a certain diagnosis, the sooner they can begin whatever course of treatment might help.

Good luck.

I hope it turns out that you have neither. What I'd like to see happen is what happened to me. For some time my doctors thought I had some terrible degenerative neurological disease, but when they finally diagnosed me accurately, all I had was pernicious anemia. Sure, that could eventually be fatal if left untreated--and it could produce an Alzheimer's like dementia before it killed me, because B12 is needed for the blood cells to carry oxygen, and my body cannot utilize ingested B12. But since it has been diagnosed, I get a monthly B12 shot, and that is all it takes to keep me functioning properly.

If you haven't been tested for B12 deficiency or SCA 3, have them run those tests, too. If your symptoms are not really those of ALS, then maybe you don't have it after all. We will all be keeping our fingers crossed for you!

[ThatsMyBarack]

54. Good vibes from me to you:

:hug: :grouphug: :hi: ;)

[TwilightGardener]

55. I hope he's wrong. Good vibes and a prayer headed your way.

[GreenPartyVoter]

56. Hugs and vibes of comfort and healing coming your way!

[maxpower]

57. Vibes

Sending positive vibes from Northern Illinois. I wish you well. I feel for you, alone and scared is not how anybody should be. I hope all is well for you.


Peace to you,
Max

[RamboLiberal]

58. thanks for all the good vibes, posts & PM's

And besides possibility what also pisses me off is 8 years of stem cell research because of GW's "ethical" decision while at the pig farm Aug 2001! While ignoring the 8/6 PDB that was his "great decision of the month".

[shockra]

60. Make sure you don't have a Lyme infection.

Pain and stiffness in the neck was one of my most persistent problems. January would not be the usual time to think of getting Lyme Disease, but it can take months to affect you neurologically. And it always will if left untreated. Lyme symptoms often mimic MS, ALS and Parkinson's.

Docs can be stubborn on this subject. There have been cases of Lyme in all 50 states. Yet most anywhere they will say "you can't get it here!" My sister and I both tested positive in Alaska. (She had a rash. I never did.)

PM me if there's any info I can help you with. Best of luck to you. :hug:

[RamboLiberal]

66. had blood test for Lyme neuro didn't think of so had PCP do

Never had a tick bite I know but out in weeds a lot at country shooting ranges. Test was negative but who knows.

[Cali_Democrat]

61. Good vibes! Keep your head up!

You are definitely not alone :hug:

[Mz Pip]

62. I really wish

doctors wouldn't throw out words like ALS with just cursory exams. It may needlessly scare the crap out of people and not even be the right diagnosis.

It sounds like you are seeing all the right kinds of doctors and they will get to the bottom of it. My thoughts are with you and hope this turns out to be something benign.

[otohara]

63. Pain

I have post-polio-syndrome and it's similar in the sense of atrophy, weakness and chronic pain. I would advise against steroid injections into the spine for your neck/back pain. They don't work so well and are extremely bad for your immune system, which will bring on a whole host of other problems. It may take a while to find a pain RX that works for you, don't let the docs push you around.

[renate]

64. be sure to ask the doctor(s) to rule out myasthenia gravis, which is treatable

Not curable, but the symptoms are treatable.

Neck pain can itself lead to balance problems:
http://www.ncbi.nlm.nih.gov/pubmed/9004119
http://www.ncbi.nlm.nih.gov/pubmed/17553727

And cervical spondylosis (aka cervical spondylotic myelopathy) (treatable!) sounds like a pretty likely candidate for explaining the muscle atrophy and weakness, the pain, and "clumsiness while walking," which sounds like a gait and balance thing:
http://www.aafp.org/afp/20000901/1064.html
http://emedicine.medscape.com/article/1144952-overview and especially http://emedicine.medscape.com/article/1144952-clinical

If the pain is a burning kind of pain, it could be reflex sympathetic dystrophy.

What's seen on MRIs isn't necessarily a reflection of how severe symptoms are, so a radiculopathy could still well be the cause of your pain, muscle atrophy, etc. Anyway, you have a list of possibilities to ask your doctors about. Of course you're concerned about ALS, but that doesn't make it a foregone conclusion--there are many other possibilities, and cervical spondylosis is actually very common, and if you're going to make yourself crazy Googling stuff, I suggest you spend your time on that one and stay away from the ALS.

Good luck and let us know how you're doing.

:hug:

[Diclotican]

67. RamboLiberal

RamboLiberal

My best wishes RamboLiberal. Sorry If I can't do anything to help you, or at least comfort you in any way.. But you got my vibes, and I do hope you can live many years with it.. And hopefully it is NOT ALS..

Try to get so mutch information as you are able to do, at least to be more at ease with yourself.

Diclotican :hug:

[Erose999]

68. Lost my mom to ALS in June. The 3rd would have been her 58th B-day.

My advice to you is get as good of a diagnosis as you can. MDA can refer you to doctors that specialize in ALS. My mom's doctor, Dr. Glass is one of the best. And then do the paperwork to get your social security and medicare started (if you need them) ASAP should it be confirmed you have it.

The biggest thing is to not get discouraged. Try to be resourceful in coming up with new ways to do things. My dad made my mom a set of silverware with oversize handles made out of foam that she could hold on to. They mounted soft hooks to the walls in certain places to help her get dressed and undressed. stuff like that. Most of the physical therapy is geared toward stuff like this as well.


MDA is great and did a lot to help my mom, especially in arranging physical therapy.

[RamboLiberal]

73. my doc does specialize als

And I will try to get 2nd opinion if definite diagnosis from other big ALS clinic in town.

Very to hear about your mom. :cry:

[MilesColtrane]

69. I'm hoping for the best for you.

:hug:

[bbgrunt]

70. we will keep it lit for you.

[TuxedoKat]

72. Good thoughts

and prayers coming your way. (((HUGS)))

[mmonk]

74. Sending them your way.

[PRETZEL]

75. Vibes are most certainly coming,

I've had issues in the C-4 and C-5 area in the past.

I've been lucky in that my MRI only found a herniation.

But I still live pretty much with a constant nagging little pain in the same area (lower neck, upper back) but haven't had the numbness in a few years.

As was mentioned before, Dr. Google isn't always your friend especially in something like this. Trust your specialists and then get second and third opinions.

I'll be praying for the best.

[WinkyDink]

76. {{{RamboLiberal}}}

[sudopod]

77. *hug* nt