Update from Skydog

[awieleba]

Hi skydog

when is your neuro appt? Is it at an als or university clinic? I personally would not waste time or money with a local neuro with your level of anxiety about the matter. I went to one locally and ended up going to the university anyway. I did start taking lexapro and it has helped me. I understand your fears that we did something to cause this. I have thought it myself, I use to be one of those free style hippies 15 yrs ago (hard to believe, my hubby cant imange) and smoked alot of things and drank and on top of it, I over exercising and not eating to boot! I feel I ruined my immune system, but everyone I knew then, is fine know. I cant believe that was me, I am know the most uptight mom of 3 you could ever meet! I would be so ANGRY if they ever did what I did. The point is, we cant change what we did. I have been beating myself up because after I gave birth, I got a flu shot and I think that could have something to do with this since I was in a weakend immune system state. I jsut regret that more than what I did 15 yrs ago.

Try to live and be happy. I try and it works most days. I just pretend it is all goooood. I think that "IF" this is it, you gotto be happy and live. I was a wreck untill I just stopped living like I was dying. It is hard for me, I have to look at 3 little faces every day that NEED me.

take care!

 

[skydog]

hi awielba

have you been formally diagnosed? and for how long if so?

nice to hear from you. trying to hang in there...

 

[aobrien]

Have you taken Cipro, Avelox, Levaquin or any other Fluoroquinolone?

 

[awieleba]

skydog,

I have no diagnosed and have been going to an als specialist. i have had all the tests.

aobrien,

I took cipro first and was on levaquinn. i also was on a heavey duty IV one called flagy, and that can cause neuropothies. also was on vancomycin, all these for 4 months round the clock due to a severe colon infection.

 

[skydog]

No- I didnt take any of those meds.

 

[aobrien]

Skydog...

Am I you, or are you me? I just searched past posts by you to educate myself with your symptoms/situation. I was amazed at the similarities..

I am a 32 year old male...good health. I consider myself to be in good physical condition. Like you, I felt tightness, 'dead', and 'tired' in my limbs (both arms and legs) "out of no where" as my initial symptom. I felt like I was getting old. I made an appointment with my GP for these symptoms as well as a prostate problem that was causing discomfort. All of my blood work was normal, and I was prescribed Cipro to treat the prostate. Many other symptoms followed after taking Cipro (too many to list)...some of which do not match typical symptoms seen in ALS, while others do. Back to the GP, and I was told this was a "stress" related issue. My symptoms only worsened. Like you, I experienced episodes of having a tough time grabbing and hanging on to small items, such as car keys. I began trying to self diagnose myself via the internet. ALS continued to be the most popular result of my searches...side effects from the Cipro was second.

We also have other very common symptoms that are interesting...#1 - STRESS. Whether or not you want to admit it, you are going through an extremely stressful time in your life. You can tell yourself all you want that your situation is not stressful, but the body and mind knows different...and marriage is a stressful time. For most, this is one of the most stressful events in their life. I too am going through some of the most stressful events in my life. #2 - Fasics appeared only AFTER reading about ALS on the internet. Once I googled my symptoms and ALS appeared as a result, I have now experienced several of those symptoms I did not have prior to internet searches. My muscle fasiculations began in the knee as well and quickly spread to every body part possible. The fasics have not quit. Now, any little thing that happens in my body, I recall reading about it on an ALS site.

I have no knowledge or experience with ALS or any other medical condition. But, I do have a little advice, based on my situation. This is easier said than done, but...1) Stay calm and let the Doctor diagnose you (I read one post where you were convinced you have ALS); Don't spend all day on the internet reading about ALS. I know it's difficult, I spend too much time reading and searching symptoms as well. I have taken two trips since my initial symptoms began where I did not have access to the internet. Those two occassions are the best I have felt. 3) Quit kicking yourself over a night with the boys in Vegas...it's done, and it is not the cause of ALS. I beat myself up over the smallest things, it does nothing but makes things worse.

I wonder if we got quit searching, reading, and trying to self-diagnose if our symptoms would improve. I am going to try it, before any appointments with a nuero.

 

[CB1977]

aobrien- Wow, I am 31, and my symptoms are alot like yours as well. I was talking to Skydog about the fact that we have the same profiles. What is even more strange is that if you go back to my first post listing my symptoms, my GP thought I had prostititis. My conditon also came on quickly, like in a matter of weeks with fatigue being one of the main symptoms. So how do you feel now? Since you have calmed down, have the symptoms gone away? I certainly feel that strees can do crazy things to the human body and mind.

CB in Ohio

 

[aobrien]

Like I said earlier, 'easier said than done'...my problem is I have yet to calm down. It's almost impossible when you have fasics, tremors, joint pain, elbow/knee/shoulder/back pains, stiffness, perceived abnormal gait, and other issues every single day. Now, I am fighting off sinus/alergies and I am hoarse. So, you can imagine how my mind is working now. It's difficult when you are experiencing abnormal health issues to stop self examining your body and your symptoms.

That said, I have some days that are much better than others. How do I feel right now? Nowhere close to normal, but much better than some of my other days over the past 3 months. Maybe Wright can confirm this, but with ALS my understanding is that you don't have ANY days that are better than the day before. Also, I am under the impression that weakness with ALS is progressive (i.e. dropping things...I think that is a strength issue and once that begins it is progressive). My understanding is you don't go to bed feeling weak in an area, wake up feeling okay, then back to weakness. Of course, all I have read is the internet, so that may not be the case.

Anyway, I have decided that until I have definite weakness, I am just going to go on and label this an issue that was probably a virus combined with stress, then a reaction to the cipro. I think I had several issues happen at the same time, and my symptoms may be something that stay around. That's what makes the most sense right now anyway. I know I am not helping the situation by working out more to try and prove to myself that I have no weakness. I also know that the stress will not get better until I can convince myself that my health is something that will improve. If the fasics would go, that would alleviate the stress...and unfortuantely it's vice versa. Again, 'easier said than done'.

 

[CindyM]

It's almost impossible when you have fasics, tremors, joint pain, elbow/knee/shoulder/back pains, stiffness, perceived abnormal gait, and other issues every single day.

Don't sell yourself short. I found that you can get used to any symptom. My latest mantra is that breathing is over-rated! :lol:

Hang in there! Cindy

 

[rose]

Hi guys
At first thought it was anxiety and now realize it's due to a lack of oxygen entering my lungs possibly from a weakend diaphragm. I always slept on my stomach - now I'm sleeping with several pillows propped behind me. I'd go get a bi-pap but my fiancee would freak.

Skydog, what is your pulmonary doctor saying? Have you had a recent pulmonary function test? How did your doctor interpret the readings? There is also a stress test for pulmonary function (similar to the stress test for heart, you walk, run a treadmill) this might be helpful in finding the cause of breathing difficulties. Are you having a headache that wakes you, or having morning headaches?

I hope you get some answers soon.