Re: Survey
I realize these posts are rather dated but wanted to add my symptoms list somewhere for reference. This seems like a good place
I do not yet have a DX
1) Symptomps prior to Dx
March 2010 : I woke up one morning feeling ill and very tired-didn't sleep well during the night, thought I was coming down with strep as my daughter was just getting over it. That evening I noticed by face was droopy on one side. It was gone by morning, went to work..it came back and I was sweating profusely around my torso and having sharp shooting pains in my back, neck and head. Went to the ER..diagnosed with Bells Palsy sent home with steroids and anti viral meds but the doc on duty wanted me to return the next day and see a particular doctor who would then speak to someone at a larger facility about the pains I was experiencing. Went back waited 8 hours and didn't even get to see the doc he wanted me to see and the one I did see said he would have diagnosed me with Bells and I had to worry about my eye getting stuck open ?!? went home exhausted. Next day the first ER doc I saw tracked me down at my mothers apologized for how I was treated when I had returned and had scheduled a cat scan for me. Went to the scan, on the way home had metallic taste in my mouth and was very happy so much so that I mentioned it to my mother~aura maybe~ later on that evening as I was sitting chatting with my bf I was all of a sudden unable to speak though I knew what I wanted to say and began to sweat profusely around my torso yet again. I was taking by ambulance to the ER. On the way I went in between being able to talk and not ,and my trunk began to convulse,and my lips were smacking when I could speak. I was admitted and stayed for 5 days -they did and EEG MRI and numerous blood tests-and came up with nothing. I was to see a movement specialist because of the smacking that was still happening and slight tremor in my left arm. This lasted about 8 weeks afterward. I went off the steroids and antiviral meds and was put on anti-seizure medication. I was told I did not have diabetes, heart disease or a stroke though they did see a white patch on my brain they told me it was normal. The Neuro on staff said I did not have bells palsy.
2) Were you mis-diag or was is suspected ALS from start
misdiagnoses of Bells Palsy
3) Were you ever told, by the ALS clinic or the spec. that what you have "IS NOT" Als
No though the movement specialist I saw there after told me I did not have parkinson's or huntingtons and she didn't "think" I had MS. She also told me to get off the anti seizure meds.
4) Vistits with Doctors (the important ones), pre diagnosed and post diagnosed
Movement specialist-blamed it on stress told me she would refer me to a psychiatrist never received a referral. Went off work for 7 months.
(optometrist) discovered pressure in eye is borderline and ocular nerve is larger than normal-going back for further testing.
5) What people around you (friends / family / co workers) would tell you when you started having problems...i.e. did they think you were crazy...etc.
They were worried at first now it seems some of them don't know what to think because they figure the doctors would have figured it out by now.
6) How did it affect your home life / marriage.
Hard to get support
7) What type do you have (Bulbar / LImb)
NA
What are the concurrent symtopms and are there any unusual ALS Sypmtoms, like pain, numbmess, tongue hurting, chills, etc etc...
since the episode> I have had two more similar occasions though not as severe where I am not able to speak. I have trouble forming my words, urinary incontinence, pain in limbs and extremities (sharp) numbing, tingling, trouble staying asleep (dream all the time) muscle twitching, blurry vision, pain in ribcage, back of neck and head. Weakness in arms ( have trouble lifting my shirt over my head). Snapping joints, ringing ears, droopy eyebrow and smile on right side (comes and goes) my mouth pulls down to the left on occasion causes drooling. Vertigo type dizzy episodes. Blood in mouth what I believe are Posterior nose bleeds (new symptom)
9) How crazy you think i am....LOL....Just joking on this one...gotta keep up the humor, but feel free to comment..
Not at all crazy
10) Treatments, when started and how they have worked. Should relate the treatment to symptoms if possible and their relief or failure.
Lyrica-for nerve pain-stopped taking it when it wasn't working and I discovered they didn't even know how it works-I don't feel right taking something when I don't even know what is wrong with me personally...maybe if it had of offered relief I would have felt differently