Ever Heard of Going to the Doc too Soon?

[Jules45]

Recently I've been concerned about going to soon and a couple of variables:
-when is going to soon?
-Symptomatic of PBP or ALS?

It appears that a key for which Neurologists search is weakness in some area. As evidenced by Thersa (canifet).

I also wonder if Theresa had an EMG when she first experienced this weakness. I'm thinking an EMG early on when she first experienced the weakness would have shown abnormalities.

My symptoms started December 10, 2008. Weakness (found to be percieved), fasiculations, and fatigue.

Since then 6+ weeks later I've had blood tests, EMG, MRI's, multiple Neuro exams. All negative by my Dallas Neurologist who also sent my test results to his ALS specialist friend at Stonybrook NY. He has told me I don't have ALS.

However, the last few weeks I've been experiencing cramping in my hands when writing, forearms. and subtle cramping in my arches. Many of the posts by PALS here have stated that they started out with cramping that later evolved into weakness. Due to my personal symptoms this is NOW A BIG CONCERN FOR ME.

I wonder if the EMG done on my legs and neck was done too early. Now part of me is just sitting around waiting for the impending doom of weakness to appear somewhere.

I've taken a little comfort in knowing that the fasiculations in my legs likely are not caused by ALS because it would have shown up on my EMG. However, the emerging symptoms and unknown causes of the cramping is extremely disconcerting.

[canfiet]

Jules45

Sorry I didn't reply sooner. In hindsight, I had severe charlie horses in my legs. I then started limping with weakness in my right leg. This went on for 4 months before I saw the neurologist or had the EMG. My EMG was abnormal but I was told that this may have been an inflammatory process or autoimmune. I started IvIG without any response. My neurologist could not tell me that I did NOT have ALS at that time. But he really didn't think so. My legs got worse. More fasciculations all over and more spasms in my legs.

I remember that feeling of impending doom. No one coud give me an answer and basically just waited for me to declare myself. It was so hard. Then my second opinion physician was so positive and told me that he did not think that this was chronic. Yet, he never said...you do NOT have ALS. "Only time will tell". Less than 2 months and now I have the ALS diagnosis. Sorry so wordy, Hope this helps. Teresa

[Jules45]

Teresa, sorry to hear about that and thanks for the response. I wish you and your family all the best under the circumstances.

[perplexed]

I haven't posted in a while (if you read recent threads you know why) but I just happened on your posting and wanted to comment. I agree with you 100% in wondering why people seem determined to find they have ALS in the face of medical disagreement. Having said that however and because I am a bit jaundiced in the face of medical incompetence, I understand people's suspecting doctors may not know.

My sitn is different; my husband had only swallowing difficulties, clean EMGs, no clinical weakness or atrophy, and then a firm dx of bulbar onset ALS. I had maintained since the beginning that this seemed incorrect and that not all diagnostic tests (to rule out cancer) had been performed. In fact, he has advanced oral cancer that should have been detected four months ago. The neurologist dismissed the swelling under his chin on two visits, saying that he was just presenting atypically and that due to ALS' progressive nature, he just hadn't presented with weakness YET. That can all be true, but it also explains away a lot. So when people are doubtful, either against a medical opinion giving them a dx or not giving them one, my instinct is to keep on researching and getting second, third, and fourth opinions. A doctor who discourages this is unacceptable for obvious reasons, andif the only downside is that the patient is thought to be a quack or simply wrong, that's not so bad.

I am so angry with the medical profession now I am shaking as I write this. Thank goodness for all the good doctors out there. We just encountered too few of them up to a month ago!

All the best,
Perplexed

[justasking]

Hi, out there...I am very new to this site and need a little advice

My husband has a sibling with Als lower limb onset ( Now Familial als). We found out his sibling was ill about 2 years ago. while his sibling was bieng tested further my husband himself started experiencing some minor symptoms like exaustoin, twitching and getting short of breath, and weakness in ankles.

OF COURSE our first stop was the Nurologist. He did the EMG test (JULY OF 0 and a few other tests and they said that my husband was ok so far as they could tell.. at the moment...so NO ALS. but they wanted to retest him 6 months later.

Well testings on My husbands sibling showed that the als was now really Famalial ALS . The Dr. said all siblings needed to be tested. My husband got tested about 8 months ago and now we are very worried due to the fact that HE DOES have all the SAME genetic FALS markers as his sibling.

I am not sure of what his chances of getting the disease are. Since the genetic testing results my husband has declined the emg retest and now he is having a few more symptoms. Chocking on food while chewing and some times on drinks. He is also mis pronouncing a few words. I have had to completely change how I cook and what I cook to accomadate his needs. My husband says there is no point in going back for them to tell him that he is fine when he himself knows he is not. when we went to the Nuro. it was before the genetic test and also they only tested arms and legs. I do not thing that is where the most of his problems are.

Is there any advice out there ?

There is so little info out there On Famalial ALS that That I have found, any advice ?
since the genetic testing my husband is now having trouble chewing

[Al]

Hi just asking. Welcome but sorry about your husband. If you use the search feature above and type familial als, there are many threads on the subject. You are sure to find answers to some of your questions.

AL.

[Sonya L]

Hi my husband is having syptoms of ALS and was told he did not have it even though it runs in the family for two generations! He had a uncle that had slow on set ALS. I belive that may be what my husband has. Since the symptons are as individual as the person with ALS, it is very hard to be diagnosed. The gene that can be tested for is not found in the family members who have had ALS making it harder to know earlier on. For us it has been a wait and see what happens.

[Sonya L]

I understand the problem of getting your husband to go back to the doctor. My husband will not go back and is having some of the same symptoms as yours!

[Sonya L]

Even if ALS runs in your family, the doctors do not think of it first!

[particlegirl]

Originally Posted by wright

I suppose that if I could look into the future and I knew I was going to have prostate cancer when I am 80 . . . and I checked now . . . it would be too early.

Here's the deal:

If anyone has symptoms consistent with lower motor neuron death . . . and they get a thorough EMG along with a thorough clinical exam . . . and it is all clean, then they do not have ALS. END . . . OF . . . STORY! If someone does indeed have lower motor neuron death causing their symptoms, it will show-up on an EMG. END . . . OF . . . STORY! EMG's have the ability to find subclinical signs . . . meaning . . . you don't know you have them . . . but the EMG does.

For those who see people post on here that say they have had clean EMG's that later were diagnosed with ALS: they had upper motor neuron problems or uppper motor neuron dominant ALS or pseudobulbar palsy . . . and then later on had lower motor neuron death, which the EMG could finally detect. Upper motor neuron death cannot be detected with an EMG. Those symptoms are diagnosed clinically.

Upper motor neuron problems are: brisk reflexes at a rating of at least 4+ . . . clonus . . . Hoffman . . . Babinski . . . jaw jerk . . . stiffness . . . spasticity . . . weakness due in large part to the stiffness and spasticity.

Even if you have all of the upper motor neuron symptoms and lower motor neuron findings on an EMG . . . it still doesn't mean you have ALS.

If a neuro evaluates you and does so thoroughly . . . and tells you that you don't have ALS . . . PLEASE BELIEVE THEM. They know a hell of a lot more than anyone on here about neurological diseases. If you don't trust them, then get a second opinion.

It just amazes me how so many insist they have ALS when there is no evidence they do. There are so many people on here that would love to be in your shoes. Be thankful you are so lucky and move-on with your lives.

Take your "near-death" experience and do something positive with it. Donate to ALS research. Write your congressman. Donate your time to ALS causes (educate others, volunteer, be an advocate, etc.).

Those are my thoughts.

Wise words..thanks to everybody in this forum I feel a more relieved now.Soon I will get a CT and maybe an EMG...wish me luck

[Connie]

Wright. You are so right and it would be so good if people would follow your suggestions.

[Zaphoon]

Jules,

You can have any one of a number of things causing your problems. As Wright has pointed out, if your EMG results are okay, then your current symptoms (for which you had the EMG) are not being caused by ALS.

There are many disorders/diseases/syndromes that can cause cramping and such.

Zaphoon

[Kellie]

Hello, I'm new to the site, but finding lots of interesting information. I'd like to know what you think of this: My symptoms started with muscle twitching in Feb, slight foot drop in March, followed by serious leg weakness and pain in April and May. That's 4 months. At the end of May a local Neurologist did an EMG, told me I had absent ankle reflexes, that I did NOT have ALS, MS, or any of the those. He thought I had CIDP. Last Wed, less than 2 months later, a neuro specialist did another EMG and told me I had ALS. Does ALS actually progress that fast? I'm thinking of visiting an MDA/ALS clinic for that second opinion you recommend.

[joelc]

Welcome to the forum! I would definitely go for a second opinion. ALS is very different for each person so it is possible, but going to an ALS Clinic will relieve the doubt. Good Luck and keep us informed.

[crystalkk]

Kellie,

I would get a 2nd opinion by an MDA/ALS clinic.