Terrified of ALS

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Terrified of ALS

Postby enzoli99 on September 10th, 2014, 10:27 am

I have had on an off again fear ( amongst other diseases) of having ALS. Its ruining my marriage and life. Im so fed up and tired. 3 weeks ago , I woke up with the worst knee pain EVER. I didnt sleep for 2 weeks straight. The pain was so bad. I got anti inflammatories, morphine, muscle relaxant and nothing worked. X-Ray showed no fracture. Now its getting better but I have weakness in that leg. ( I walked with a cane and brace for 2 weeks). My muscles are twitching more than ever all over my body. Both my shoulder joints and elbow joints hurt. I had a blood test for arthritis but it was negative. I feel drained and desperate. I am so afraid it could actually be ALS. My legs and arms seem to be getting weaker, its harder to pick up my kids. I need some encouragement . I read that ALS could cause pain in the joints. Help :-(
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Re: Terrified of ALS

Postby misterjuanperalta on September 10th, 2014, 10:45 am

See a Neurologist, specialized in ALS. Note, there's a difference between feeling and failing, fatigue and true weakness. When did twitching first start?
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Re: Terrified of ALS

Postby enzoli99 on September 10th, 2014, 11:00 am

My twitching started 15 years ago. It comes and goes. I had come to terms with it because of the lenght of time that I have the twitches. But now, I have pain everywhere , unexplained knee and leg pain so......getting very worried
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Re: Terrified of ALS

Postby misterjuanperalta on September 10th, 2014, 12:01 pm

Worry often leads to wrong conclusions. Try to think about something else. I'm going through the same things.
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Re: Terrified of ALS

Postby mwagner on September 10th, 2014, 12:25 pm

If your twitching started 15 years ago - it is not related to what is going on with you right now with your pain. Your twitching is obviously benign.

There are many, many things that can cause pain. I would suggest talking to a neurologist, or perhaps a rheumatologist and start figuring out why you have such bad pain. You don't hear of &LS starting out with pain. It's a disease of weakness.
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Re: Terrified of ALS

Postby enzoli99 on September 10th, 2014, 12:44 pm

Hi mwagner. Thanks, I really ned to hear positive words. Nobody around me seems to understand what Im feeling.
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Re: Terrified of ALS

Postby enzoli99 on September 10th, 2014, 12:52 pm

Does ALS cause joint pain ?
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Re: Terrified of ALS

Postby enzoli99 on September 10th, 2014, 12:53 pm

misterjuanperalta ....I will try to thing of others things but Im so convinced right now that I have *** that its hard to do. Sorry to hear that your going through the same things.
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Re: Terrified of ALS

Postby misterjuanperalta on September 10th, 2014, 1:49 pm

Try to incline to believe it's BFS or something benign. That's what I try to do. Seek out an expert in ALS at the Mayo Clinic. Don't settle for sub-par neurologists. I've had throat and nasal irritation for two months or so, aside from twitching since or near June. Could it be ALS or something else? I hope not. My ENT suspects nothing sinister about my nasal and throat concerns. I am trying to remain positive, as should you. I am seeing multiple neurologists.

Here's my issues, actions (summarized) - viewtopic.php?f=5&t=20814&p=156544#p156544

Regards.
Last edited by misterjuanperalta on September 11th, 2014, 5:14 am, edited 1 time in total.
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Re: Terrified of ALS

Postby enzoli99 on September 10th, 2014, 4:31 pm

Another worrying symptom I have now is that when I go up a flight of stairs, I have to really force hard to get to the top and then I am out of breath. This leads me to believe that I have weakness in my legs.
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Re: Terrified of ALS

Postby elliottok on September 10th, 2014, 5:41 pm

enzoli99 wrote:Another worrying symptom I have now is that when I go up a flight of stairs, I have to really force hard to get to the top and then I am out of breath. This leads me to believe that I have weakness in my legs.



That's probably just you focusing on things you never even thought about before. Once the anxiety starts, you'll start analyzing every little thing. If you're out of breath after climbing stairs, it's more likely that you're simply out of shape than dying of ALS.
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Re: Terrified of ALS

Postby Yuliasir on September 11th, 2014, 12:40 am

enzoli99 wrote:Another worrying symptom I have now is that when I go up a flight of stairs, I have to really force hard to get to the top and then I am out of breath. This leads me to believe that I have weakness in my legs.


Hi,
regarding stairs - worrying symptom may be if you notice that you drag the foot. It is easily seen on stairs. If you can not lift the foot properly and have to drag it beside the stairs, the it is worth to worry and see the neuro.
Having more efforts to get through the stairs and being breathless means only that you have rather blood circulation problems, or sedentary life, or just age (have no idea regarding your age, lifestyle etc. but can estimate a bit becasue I have that problem becasue of the aforesaid reasins in my 44 :)

regarding knee pain - well, ALS is a disease of muscles and nerves, not joints. Sometimes people report severe spasmatic pains in the bulk muscles becasue of spastic paralysis (when upper or brain motor neurons die first causing seizures in the affected muscle due to disrupted reflex arches). But usually not in the knee but rather in the calves or tighs.

People with BFS are known to have pains in the joints. Knee pains, if not related to traumas, are usually (as far as I know) related to circulatory issues too (vessels spasms), and of course such pains are resistive to regular painkillers (I just wonder you also used morphine and it did not helped you... but my granny had 20 years of neurogenic spasms in the bowel and she complained for the same - only spasmolitics had helped a bit but not painkillers). We also have perceived weakness, pain at normal activities (like brushing teeth or drying hair), unexplained joint pains etc.

so far nothing of your reported symptomes does not point to MND, as far as I may judge on the basis of this site information and my own 3 year of BFS experience.
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Re: Terrified of ALS

Postby Yuliasir on September 11th, 2014, 1:00 am

BFS and ALS share similar symptoms.

thanks to Dr Google for this idea :)))

ALS is a quickly developing paralysis leaving 3 to 5 years of life after active onset. Clinical weaknes, significant neurological losses soon after onset, depression/apathy on the psychological side. Clear changes on EMG, bloodwork (CPK), etc. Twitching usually is combined with noticeable clinical weakness. Early symptoms iclude changes in clinical exam (reflexes, strength) and on EMG.

BFS is slowly developing and often self-cured hyperexcitability of central and autonomous nerve systems. Unexplained twitching is a main symptom, other iclude paresthesias, migrating pains and other non-specific issues. No paralysis, neither spastic nor weak. No neurological deficite, no pathological reflexes on clinical exam. Symmetric brisk reflexes are possible (unlike in ALS where hyperreflexia is much pronounced and usually asymmetric). Twitching is random, migrating and not associated with clinical weakness. On the psychological side OCD/GAD is very clear rather than depression, agitation rather than apathy. No specific signs in the bloodwork (except often very low B nd D vitamines). No pathological changes on EMG.

so I do not see simialr symptoms which ALS and BFS could share. Twitching is not a specific symptom, so it is NOT a basis for having even suspected ALS diagnosis becasue it could be casued by tons of reasons, starting from hormonal disbalance to electrolytic changes in the blood, and MND are not a leading reason in the list (while mood disorders are, by the way). Neurologists usually distinguish between BFS and ALS very easily, usually from the very first minute of visual exam. ALS could be a false diagnosis in case of compression syndrome, when atrophy, reflex changes and even paresis exist due to mechanical trauma, but not in case of BFS where there is no muscle atrophy, no paralysis and no signs of motor neurons damage on EMG.
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Re: Terrified of ALS

Postby Yuliasir on September 11th, 2014, 1:02 am

enzoli99 wrote:Does ALS cause joint pain ?


Nope. While BFS does, probably because of some autoimmune component or just becasue of lowered pain threshold in the CNS.
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Re: Terrified of ALS

Postby misterjuanperalta on September 11th, 2014, 5:15 am

I corrected statement.

Yuliasir wrote:
BFS and ALS share similar symptoms.

thanks to Dr Google for this idea :)))

ALS is a quickly developing paralysis leaving 3 to 5 years of life after active onset. Clinical weaknes, significant neurological losses soon after onset, depression/apathy on the psychological side. Clear changes on EMG, bloodwork (CPK), etc. Twitching usually is combined with noticeable clinical weakness. Early symptoms iclude changes in clinical exam (reflexes, strength) and on EMG.

BFS is slowly developing and often self-cured hyperexcitability of central and autonomous nerve systems. Unexplained twitching is a main symptom, other iclude paresthesias, migrating pains and other non-specific issues. No paralysis, neither spastic nor weak. No neurological deficite, no pathological reflexes on clinical exam. Symmetric brisk reflexes are possible (unlike in ALS where hyperreflexia is much pronounced and usually asymmetric). Twitching is random, migrating and not associated with clinical weakness. On the psychological side OCD/GAD is very clear rather than depression, agitation rather than apathy. No specific signs in the bloodwork (except often very low B nd D vitamines). No pathological changes on EMG.

so I do not see simialr symptoms which ALS and BFS could share. Twitching is not a specific symptom, so it is NOT a basis for having even suspected ALS diagnosis becasue it could be casued by tons of reasons, starting from hormonal disbalance to electrolytic changes in the blood, and MND are not a leading reason in the list (while mood disorders are, by the way). Neurologists usually distinguish between BFS and ALS very easily, usually from the very first minute of visual exam. ALS could be a false diagnosis in case of compression syndrome, when atrophy, reflex changes and even paresis exist due to mechanical trauma, but not in case of BFS where there is no muscle atrophy, no paralysis and no signs of motor neurons damage on EMG.
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Re: Terrified of ALS

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