Scared so many questions

[Scared321]

I would appreciate All and any help and answers to my questions. The first week of march 2012 I awoke with blurre vision in my right eye. This last approximately 3 hours and then cleared. This happened 2 more times the same week lasting longer each time. This eventually led me to the Er where blood work and MRI and ct scan were completed. All rests were negative except for signs of a sinus infection. I also followed up with opthlamologist where optic nerve was checked and all results were ruled negative. Approximately 2 weeks later twitching developed in my right hand followed by twitching all over body. This lasted for approximately 2 weeks and the subsided. During this two weeks I noticed significant twitching in my quads with a feeling of weakness in both legs and significant fatigue fatigue causing me to sleep for 14 hours at a time and atill awakw tired I had an appointment with a neuro doctor who completed neuro exam and did not seem concerned at all when I asked about Als. I also have heaviness in arms and legs. I have also had increased fatigue and muscle soreness in arms and legs with any prolonged activity which neuro feels is exercise intolerance. Blood work was completed and showed slightly increased cpk and low carnitine as well as low vit d. Emg was recently completed with neuro doc finding few minor abnormalities that doc said was not diagnostically significant. I am scared to death even though my neuro feels and has told me two times that this is not Als. I have also noticed some weakness with prolonged use on my hands. Specifically typing. I should mention that I had lymes approximately 8 years ago. My arms and legs feel like I have casts on them and skin is going to rip with activity. Doc feels this is some type of metabolic problem. Thoughts ? Please help. So so Scared.

 

[Scared321]

I should also note that I am a 28 year old female. The soreness and tightness I am experiencing is all over my body. Sometimes my legs feel like rubber. Please help

 

[Scared321]

Neuro says I am strong as ox. However I feel weakness in my hands

 

[ghost_writer]

Don't be scared that it's ALS. ALS does not present with the problems you have listed. Trust your doctor, it's NOT ALS.

 

[skipper66]

I definitely don't think you have ALS. Did they check your heart out with a stress test or EKG?

 

[Scared321]

No they did not check my heart out. Do you say that because of the cpk. Thanks so much for your responses. I am still so curious about the stiffness

 

[ghost_writer]

I suggest you make a written list of questions, then address your concerns with your doctor.

 

[Scared321]

I have. Unfortuneately the neuro does not seem to have any sort of answers for the stiffness. That is what is concerning to me. Thank you for your response

 

[Scared321]

I feel like my symptoms are progressing specifically the muscle soreness an stiffness. Does the low carnitine with increase cpk have anything to do with Als

 

[ghost_writer]

Dear Scared321,

I am sorry you are having you medical issues. I do hope you and your doctor are able to sort it out. Stiffness? Stiffness could mean one thing to one person and another thing to the next person. Joint? Muscle?

Attempting to answer your questions about stiffness could lead to an unfounded escalation of your concern about a common symptom.

If I understand you ask your doctor about ALS. I would guess you found ALS met one your symptoms from a search on the net. Right?

If you self-diagose on the basis of info from the net you are subject to show an incomplete or distorted understanding of other diagnostic possibilities and medical likelihoods.

You see your doctor and ask about ALS. Right?

Your doctor dismisses ALS, you're as strong as an ox. Are you following me?

I am HAPPY to offer you reassurance that you don't have ALS. I do want to warn you about seeking medical advice on the net (including this forum). The next time you visit your doctor you may exaggerate one set of symptoms in support of your new self-diagnosis while minimizing or suppressing contrary symptoms. This could impair rather than enhance your doctor's ability to reach a correct diagnosis.

Be well,
Roger

 

[notgivnup]

Scared, I don't think you have it either. Your symptoms and your doctor have said so. Let the expert medical proffesionals do their work and give you an answer, they are highly trained. Trust them what else can you do? Don't worry anymore it will not change the future. Best wishes.

 

[Toto's Dorothy]

Scared,

We aren't doctors here and can only give opinions. I gather by the medical terms you used, you have already consulted a doctor go og le. There lies your first mistake. He clumps information together and scares the bejeebies out of people. The fasciculations that occur in ALS people are not something that's in the forefront of the disease. They begin after the muscle has been damaged and is dying. I just started mine a couple of months ago and I lost the last limb in November. The only places I have thee few and its where my atrophy has started.

You are also experiencing perceived weakness, that is why the doc tor has no concerns for any other testing. He told you that you were as strong as an ox. He also told you twice it wasn't ALS. You must trust the doctor if you don't then find one that you do trust.

And since you have googled , did you look up what causes cpk and carnitine levels to be off? There's plenty of articles you should read. Also, you said you were treated for ly mes di sease. Had you thought about getting rechecked for that? I surely would check those possibilities BEFORE I would open pandoras box. You should also read the stickies posted above the thread. One is by Alyoop and the other you should be able to find by looking for words or scrolling down this section. Its ALS or BFS by Joni.

And by the way, your symp toms don't sound like you have ALS. So have a great holiday weekend.

 

[Toto's Dorothy]

I've been sent to mod er a tion. My post will show up later. Short version: No, I don't think you have ALS.

Enjoy the holiday weekend!

 

[Alyoop]

If your stiffness was neurologically significant then it would have showed up as hypereflexia, clonus etc on your examination. Clearly all was absolutely fine, so you are showing a bit of ALS " hysteria" . It seems a common malady at the moment.
Sounds like a virus? It's early days. If you still have theses symptoms for another 3 - 6 months, then you can always get another review.
You don't need to be on this forum.

 

[Scared321]

Thanks all for your responses. Speaking of hyper reflexia my patellar reflexes were strong on exam however the neuro said because both sides were equal it was ok that they were strong. Or hyper. That confuses me.