your opinion

[allsherote]

Went to neuro on Friday.Said he saw absolutely nothing in  my exam to suggest ALS.He said that is going to do an brain MRI and visual evoked.My question is over the weekend on Saturday all four limbs felt weak and I had prickling and tingling sensations, Sunday only right side felt weak and same symptoms, today it's all four limbs again.I have left message for their office to report new symptoms.He also said panic att. could cause this too but nuero wise he would suspect MS over anything else b/c of my ON history.He said in ALS by the time a person makes it to the doc they have something that indicates in their exam and I do not at all.Do you agree with that?? I know I am having panic attacks but these symptoms seem very real to me and seem to be more neuro related.I know I will know if it is MS once the MRI and other tests are done but do you agree with what he said about ALS. He also said ALS doesn't wax and wane like I am. I still can pick things up, am not tripping but I do feel better on some days than others as far as the strange feelings in my arms and legs. Every one in my family things it is the panic and anticipatory anxiety but they are not in my body feeling what I am feeling and it is not normal. I feel there is a hand pushing me down to the floor and depending on the day either my right side or all four limbs feel they weigh 80 lbs a piece yet I can still do things.Do you agree with his game plan at this point?Today my left hand tingles and I do not know how to determine what is a neuro symptom or a symtpom related to the huge amount of stress I have been unde

[sparklegal]

hope you are feeling better. I realize it has been a week since you posted your concerns about ALS, but I thought you might find this interesting & maybe helpful; There are many organic things that can cause numbness and tingling,(besides anxiety, stress,& low seretonin levels). When I was 18 I began having severe low back pain, numbness, & weakness in my hips legs and feet, but because of my age and the ignorance of the docs in this small country town, they thought I was just out to get drugs!! And decided they would torture me w/ every test known to man. Anyway my point is the dr. thought I had a potassium deficiency and 1 other vitamin or mineral but I can't remember the other one. But a low potassium count can have the same symptoms of some neurological symptoms. (tingling of the limbs, weakness, & burning or electric pain)
I am new to this sight. I'm not sure if you have any neurological disorders that would lead you to believe you might have ALS, but that is a pretty rare disease and it usually affects men about 1/3 of suffers are men. Hopefully you have gotten all your test results back so maybe this is all out of your mind by now, but if you are still wondering about the symptoms you might could ask about your potassium levels!
Smile everyday & don't worry about tommorrow all we have is today!!

[Soccer Mom]

It seems odd and frustrates me too that there are tests that can ease your mind, that you can pay for and the Doctors still order them! I had a Doctor like that for years, I don't lke the "wait and see" approach. So many diseases can be better contolled if diagnosed early.

[allsherote]

My problem is that they have not done an EMG so how can they be 100% sure??? They say they could tell by my exam and that isn't good enough for me. I wouldn't give a **** if I didn't have a child. I know they are the experts  but I can't believe in this day and time with law suit happy patients and malpractice insurance costing them a ton of money that they can look you in the face and say you don't have something w/o the medical test that rules it out. What do you think about that? What do you do for a living? Are you a doctor or in a related field? They told me on the phone the other day they can send me to PT. Why bother if they don't know what is wrong??? I'm frustrated to tears and  beyond.

[jan]

Hi allsherote,

When your neuro said he wasn't concerned, he didn't mean the type of concern you have, he meant he didn't feel that was the problem.

I have 3 lesions in my corpus collasum and have been told no MS, even with an abnormal exam and symptoms that could very well be interpreted as MS (and were by a number of neuros).  I, also, have herniated disks in my c-spine that would explain my symptoms in my arm, but not my leg and it is worse in my leg.  I have an abnormal EEG which could explain some of the things.

My thoughts are ask about an EEG and since some experienced things after giving birth, how about getting your hormones checked?  My sis is having terrible anxiety attacks and has had them for weeks now.  They checked her hormones and her prolacting level is very high!

Good luck

[allsherote]

My MRI of my brain and C-spine with and w/o contrast was completely normal. Yesterday weakness totally disappeared, and today it is there more than ever. I am not sure what to do anymore. Feel at wits end.

[ontherecord]

Many times patients have real symptoms that cannot be explained or the etiology clearly determined upon objective examination.  In such cases, many doctors attribute the physical symptoms to anxiety, stress, and depression.  These conditions are a convenient catch-all category.  Most neurological conditions are diagnoses of exclusion, which means they arrive at the correct diagnosis by ruling out what it can't be.  If your symptoms are real -- and I believe that they are -- the neurologists can rule out ALS, as they have done, even though they may not be able to pinpoint what it is that you're feeling.  In addition, many times, anxiety/stress/depression can and often do mimic neurological symtoms, such as dizziness or lightheadedness, fatigue, cognitive difficulty, speech difficulty and even imbalance.  Doctors, given their training and education, feel much more comfortable saying "it's stress" than "I don't know what it is."  Not knowing is usually deemed unacceptable in the medical community.  Ascribing symptomotology as a manifestation of underlying psychological issues is entirely acceptable, and is often done.  There are in fact a group of disorders that doctors often use to explain this phenomenon: malingering, somatoform disorder, conversion disorder, and hypochondriasis.

Bottom line: in your situation, they can't tell you what it is, but they have told you what it isn't.  And it isn't ALS from what you have posted on this forum.  Hopefully your symptoms get better with time.  At least try not to worry too much.

[c.light]

Hi!  I'll make this quick.  Only was ever diagnosed with a "mild" transverse myelitis.  My neuro doc said other docs might diagree because normally TM is easily seen on MRI.  He said even if it was not a true TM, it was likely that a similar type of inflammation in the spinal cord was causing the neuro symptoms.  However, all tests were normal and all neuro exams were normal, so the diagnosis was more of an "opinion".  He said that they get a percentage of patients that present with neuro symptoms only to have them resolve completely or partially without ever discovering the cause and never going on to develop MS.  I still have occasional short bouts of tingling, but I don't even worry about it anymore.  Life is too short and if something bad does happen (like dying in a car accident) I don't want to have wasted all the time before that worrying about something that isn't really effecting my life.  I hope that helps and good luck to you.

[c.light]

Hello.  Perceived weakness is exactly what it sounds like.  You feel that your arms, leg, whatever, is "weak", but it functions normally and cannot be observed on a neurologic exam.  I suffered from the symptoms that I mentioned in my previous post from the waist down, both legs symmetrically.  I also would occasionally get it from elbow to fingertips.  There were lots of strange sensatiions, etc. but you get the picture.  Anyhow, I went crazy, I read the posts in here obsessively and only made myself more anxious.  If I tripped or stumbled or dropped anything I was certain that it was the beginning of the end.  I was very fortunate to have a really great neuro doc at the University of Michigan, who listened to me.  He knew that my symptoms were real, but always held to his opinion that I would recover and that it was not MS.  (I had 2 MRIs of the brain and a MRI of the C-spine over 18 months.  They, and blood tests, were all normal.)  I'm doing great now and hope never to have to experience that again.  (I will add that in 2000-2001, I had non related neuro problems that led to an emergency craniotomy, so when my legs started tingling, I ran to the neuro never thinking of MS or ALS).  I hope your MRI gives you the peace of mind that you are looking for.  I will say that if your doctor is not concerned with ALS, I would stop thinking about it.  My sister had a friend die of ALS and the disease progresses very rapidly, I doubt your doctor is trying to placate you.

[090308health]

Hi c.light, you and I have corresponded in the past. I too had neuro. symptoms after the birth of my baby w/ no diagnosis. I still have no diagnosis and continue to experience this stuff. Do your symptoms ever come back at all? Did you ever get any kind of diagnosis? Thanks. email: ***@****

[allsherote]

Thanks for your comment. I don't think that only two questions are allowed. Three were posted today. I think it is a matter of the short of amount of time it is open for posting and how many people are lucky enough to get thru at that time. I could be wrong but anyway I am not worried about that. If I choose to take my time to get thru to ask a question then that is not Craig's business.

If you don't mind me asking what type of pereceived weakness are you talking about? My husband and I were wondering if there is a difference between perceived and actual weakness. Mostly my right arm and leg "feel" weak but I can run pick up heavy things and do just about anything. I have a two year old and am scared to death of ALS. I have asked the neuro about it and he keeps saying that he is not concerned about that at all. Easy for him to say when I twitch and feel weak. whether I am or not who knows. I have been thru hell the past two months with panic attacks and have really worked myself up a lot and plus I am lucky to get 4 hours a sleep a night. Eating but not healthily. I had my MRI's today of the brain and C-spine so I will know about MS hopefully today if the doc is so kind to call me today.

I would appreciate your response. Thanks for posting a little less rudely. It is sooo easy for people to say things like that when they are not actually feeling what I am feeling and how scary it is and the thought of my daughter.

[allsherote]

I hope and pray for your sake that you never have to experience what I have experienced the past two months. Especially if you have children. That is what this has all been about for me. You spoke about a 6 month old child. Well I have a beautiful 2 year old daughter who means more to me than my own well being ever could begin to and I have truly been terrified that she could lose her mother. I don't know if you have children and can identify. 12 years ago when this happen to me I did not experience the weakness and whether it is real or imagined now I have a family to worry about that I didn't have 12 years ago. If it weren't for them I would not have even posted once! The doctor has mentioned many times that me seeing a neuro is reasonable in his mind and that is what this is here for. If a mother of a 6 mo. old can afford the internet she can afford to take her child to the doctor for at least one office visit. You are very insensitive. Even if every one of my problems is due to anxiety, that in itself is a real disease and I wouldn't wish it on my dog so if you think this has been a pic nic you are nuts!!

[c.light]

A couple of things.  I know Craig sounds a little rude, but he is right, the forum only accepts 2 questions per day and people from all over are trying to post.  Secondly, the doctor will probably not be able to give you any further assurances over the internet.  I have posted here in the past.  After the birth of my third child I experienced tingling, numbess, perceived weakness and a host of other neurological symptoms.  I was scared to death.  My neuro considered MS, Lupus and Transverse Myelitis.  Over 18 months my symptoms would come and go, lasting months at a time.  I was in and out of the neurologist's office, had MRIs and other tests (all normal) and all the while my neuro kept saying it will go away.  He said that sometimes they never figure out what is wrong.  Anyhow, I've been fine for a while now, symptom free, and I know that all my worrying mostly just took my attention from my family.  All I'm trying to say is try not to let this control your life (easier said than done).  Good luck!

[Craig]

Then not only are you obsessed with your health, you are obsessed with yourself. I'm not trying to be rude, but when the mother of a six month old can't ask the doctor a question about her sick child because you continually hog the board with your posts (How many is it now, 4?) it shows your blatent insensitivity and lack of compassion for those less fortunate. You obviously can afford excellent medical care, your posts are full of tests and results, but remember, 44 million people in this country don't have that luxury. And that, my friend, should be everybody's business.

[newbie3689]

Thank-you Craig

[CCF-Neuro-M.D.-CS]

I would agree with the neurologist that this does not sound like ALS. I also think it is unlikely that all of these symptoms represent MS, however it is reasonable to have a MRI to evaluate this. I know it is difficult to wait, but you should have your answer to the possibility of MS after the MRI. As I have stated previously it is possible for stress to generate very real physical symptoms, but I would agree with your doctors approach to exclude other possibilities. Good luck.

[Craig]

Ah, TWO cases of OCD. Posting time is irrelevant, there are only a few questions allowed here per day. QUIT HOGGING THE BOARD WITH YOUR ANXIETY-RELATED WHINING. Over and out.

[Craig]

My comment is that you should quit wasting valuable posting space. There are people here who want to ask questions but cannot because you are monopolizing the board with your OCD. How many opinions do you want, or need?

[david555]

I am very interested in the issues that allsherote has been posting.  I'm 28 years old from Toronto and my father has been suffering from very similar symptoms to the ones suggested by allsherote.  My father has the same tingling sensation that comes and goes, mostly in the lip and chin area, but also in the arms and legs.  He has had all of the tests (MRI CT Scan) and nothing has showed up to suggest a problem.  He has visited many doctor

[allsherote]

You have to be able to post at the right time. It has nothing to do with me monopolizing the board. A word of advice the only time I have ever been able to post is around noon everyday and it is only open for about 5-10 minutes. I have a 2 year old and fear for my life. I don't have OCD. You have to be persistent if you want to post and like I said it is usually available at the same time everyday.