new symtoms and dx

[zac111]

i have had twithing all over body for over 2 months my emg was clean and abnormal ncv was abnormal showing slowed condution of the motor nerves i now have decreased refles in my arms and the twithing is worse i have an mri next week which the doc said he didnt expect to find anything on now he says he really doesnt know what it is and said i was to young for als in which i didnt buy into.my swallowing is diffucult still whenever i swallow my own saliva and the twithing is steady in my left hand but the doc did not see any muscle wasteing are weakness anywhere all other reflex was normal does anyone have any ideal what this could be?

[Jamiet]

ALS does not have decreased reflexes. As a matter of fact, a hallmark criteria of ALS is "hyperactive"/ increased reflexes. Also, generally, it does not have "slowing" of the NCV motor nerves. Everything you have said, points to MFN.....or some type of neuropathy....

You need to get to an MDA clinic, as what you have is likely treatable with IVIG.

I wouldn't be worried about ALS!!!!! The two things are "two" eliminators for ALS...

Good Luck

Jamie

[zac111]

i live in mobile al i dont think there is one near me

[zac111]

the doctor said the decreased reflex in my arms pointed to lower neuron involvment and im kinda scared with the swallowing which from what i gather would be upper neuron involvent which would be als.

[Al]

Zac. There is an ALS Clnic in Huntsville. Is that anywhere near you?
AL.

[ltr]

Jamie,

ALS can have either decreased or increased reflexes. Here is an excerpt:

People with ALS typically experience the following symptoms:

* Muscle weakness
* Muscle twitching
* Muscle wasting
* Poor coordination or clumsiness
* Muscle cramps
* Difficulty speaking or swallowing
* Increased or decreased reflexes (caused by unhealthy nerves)
* Muscles that become more rigid

http://www.intelihealth.com/IH/ihtIH/WSIHW000/32193/36577.html

I have also read that NCV can show slowing in ALS. Just wanted to share!

[zac111]

thanks al it is just 5 hours away would i have to have a referell to get in are do you know/

[zac111]

thamks for the info also ltr im just wondering whats up with my doctor the first time i saw him he told me i had brisk reflex in the knee the second time i saw him he told me my reflex was all good now he says my reflex in my arms are slow.

[ltr]

I have been experiencing the same thing. I am not diagnosed, other than some random diagnoses, but my reflexes have changed several times. I have absent reflexes in the right leg, then a few months later at a different docs I have had very hyperreflex in the right leg, then at the next docs office they were normal. There has been no discussion from the docs as to why they would change. I guess that will be my next question!

[Meg1]

Something needs to be cleared up here. In ALS, reflexes will eventually disappear as functionality disappears but depressed reflexes are NOT a symptom of ALS. Only hyper- NOT hypo- reflexia is indicative of ALS in the diagnostic stage. If your reflexes are depressed it is a good indication that you do not have ALS.

http://www.lesturnerals.org/whatisals.htm

http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm

[ltr]

It certainly is so, different websites have different symptoms, signs and data----as does each doctor.........oh, and patient. That's why so many of us have had doctors tell us different/conflicting things. My research, as well as others on this forum, has shown that you can have either reflex, depending upon upper and lower neurons. One thing I have learned from this forum is that each person has their own set of sign/symptoms. So, I guess it isn't cleared up!

[zac111]

well the doc did tell me lower neuron invovment so its not good either way.does anyone here know anythong else that causes lower neuron invovment in any diseases with normal sensary nerve.

[Jamiet]

Zac,

Meg hit the nail on the head......they should be hyper, and of course, as the muscle weakens, they would likely decrease.

Mayo Clinic in Jacksonville is about 4 hours drive from you. That's where i would go....

You don't need a referral there, you can call and make your own appt.


good luck


rgds,

Jamie

[zac111]

thanks jamie ill be giving them a call mabey this is something else i hope.

[Meg1]

It certainly is so, different websites have different symptoms, signs and data----as does each doctor.........oh, and patient. That's why so many of us have had doctors tell us different/conflicting things. My research, as well as others on this forum, has shown that you can have either reflex, depending upon upper and lower neurons. One thing I have learned from this forum is that each person has their own set of sign/symptoms. So, I guess it isn't cleared up!

Hyperreflexia is an ALS symptom. Hyporeflexia is not. I have explained why a very few ALS websites say that ALS is associated with depressed reflexes. There is no controversy about this and people who have ALS know it. You are so determined to get that ALS diagnosis, despite doctors telling you you don't have it, that you're trying to fit your totally inconsistent (with ALS) symptoms into the ALS box. That's your business--knock yourself out. But stop passing on incorrect information on a public forum. It's irresponsible.

[Jamiet]

she's right ltr.....hypereflexia is a hallmark sign.


that's why they look for decreased reflexes..to eliminate ALS..

[ltr]

Hi Jamie,

I found my information off of these sites and the Cleveland Clinic doc and the cite from my previous link. They are all consistent in saying lower motor neuron is hypo. Why is it that my info is being discredited when I am citing it? As for you Meg, get off my back....I am no different than anyone else on this forum, but you certainly are.........just plain mean.




Table 1. Clinical signs and symptoms of ALS


Upper motor neuron
Spasticity
Hyperreflexia
Pathologic reflexes (eg, Babinski's sign)

Lower motor neuron
Muscle weakness
Muscle atrophy
Fasciculations
Hyporeflexia
Hypotonicity, flaccidity
Muscle cramps

Bulbar
Dysarthria
Dysphagia
Sialorrhea
Pseudobulbar palsy

Respiratory
Exertional dyspnea
Respiratory failure

Other
Fatigue
Insomnia
Weight loss
Tendon shortening
Joint contracture

http://www.postgradmed.com/issues/1999/04_99/mackin.htm

This was on Cleveland Clinics website

CCF Neuro[P]-M.D.-RPS
4/28/2001
Scared Dear Scared:

I am sorry for both the physical symptoms and mental anxiety your experiencing. We do see patients your age with new onset ALS, but this is uncommon this early. When the symptoms of muscle fasciculations are noticed in ALS, there is always a objective sign (the neurological exam) of muscle weakness. The hallmark of ALS is having both upper and lower motor signs. One sees the upper motor neuron signs of weakness, hyperreflexia, spasticity, extensor plantar responses, and clonus, with lower motor neuron signs of hyporeflexia, flaccidity, atrophy, fasciculations and weakness. As you can see from the symptoms, there is a mixture but some keys we look for are muscle weakness with other signs combined with no changes in the sensory system or cognition. So, against ALS is the pain in the calves, no true upper motor neuron signs (hyperreflexia can be misleading unless there it is done repetitively and combined with plantar response-or by someone who does the neurological exam alot and knows the difference between anxiety induced hyperreflexia and hyperreflexia). The time you have been having symptoms should have been long enough to give you significant motor weakness, but you do not express loss of strength.

Not to mention the other link I already cited.

[zac111]

well i hope it is not als but besides that subject i was wondering if anyone here has spasms in there stomach and throat they are alfull i can see my stomach jump when it accours.