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Janine

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North Reading
Hi guys, I'm having a tough time. Not yet diagnosed with ALS. I have some habit of being somatic, but don't think this time I am. My symptoms seem to have started all within the past month and honestly I don't think I have a single area not affected. First concerning symptoms was approximately one month ago when I noticed low back/pelvic "weakness" upon getting out of bed. That symptom became progressively worse and I began to note a whole body "heaviness" while attempting to get out of bed. The heaviness was so profound that I panicked a couple times and almost had my husband take me to ER. I could still move everything though so I just tried to calm down. Finally yesterday morning I just couldn't take it anymore. Body heaviness, severe back pain and the continued feeling like I wanted to collapse at the pelvis. I have also noted increasing twitches all over the body, but most strangely and intense in the abdomen and vagina. Everyone keeps saying ALS doesn't start there, but that is where I am having the most symptoms. I also am have sore biceps and hamstrings and calf cramps. Although I don't have any trouble swallowing I am noticing an occasional change to my voice which my husband also notices. I went to the ER yesterday and spent the entire day laying on a stretcher in the hallway with severe back pain. I saw two neuro's who both were unimpressed, but I believe you would have to have severe objective signs for them to be impressed. I mean I could make the diagnosis if the person were already unable to walk. (sarcasm). Anyway I was sent home and I am suffering and freaking out. I am to schedule a two week F/U. Didn't know I would have so much pain.
 
This sounds NOTHING like ALS. It does sound like you might have some arthritis or other disc issues in your spine. Your neuro will, no doubt, recommend and MRI of your spine.
 
Thanks for being so reassuring. His Grace IS Sufficient. Many blessings to all of you out here living with ALS. Actually, I started my down hill trend last July when I was working in the ER as an RN and very large, intoxicated patient attempted to stand and I stepped forward as his knees buckled and I caught him and thrust him back up on to the stretcher. I started having morning headaches, dry nose/mouth, constricted pupils. On July 24 I commenced with the most horrific headache which waxed and waned for days and became worse when I tried to talk or God forbid yell at my teen daughters. By the end of September it became obvious I could not continue to work as R trapezius spasms, dizziness and imbalance became an issue taking me to the ER on several occasions. MRI of brain showed Flair or ? etiology and MRI cervical spine showed herniated disc C6, C7. Anyway after much therapy the symptoms began to abate and I had a short period of time of feeling well before this lastest downward trend. Anyway I know my body, I am talking a very strange and profound heaviness getting out of bed like additional gravity is being applied to me and very weak low back like it will fold up as well as horrible back pain and crazy twitches everywhere. I was previously very active hiking 3-4 miles on trails every day. Now I can barely do a mile on level ground due to stiff legs and painful back. I am sure you are used to anxious people and I would call myself one, but like I said, I know my body and I am not right and I feel quite alone. Hesitated to even come here I so respect the strength of everyone who posts here. I will take your reassurance with grace and thank you for your response.
 
please help

Okay, I have not been diagnosed with ALS, but I am sure I have something seriously wrong. One month ago I was feeling great and then I began to experience a weak feeling in my pelvis especially in the morning upon arising. I am also having constant fasiculations everywhere, including my tongue, but mostly in my abdomen and perineum. Now I am suffering from horrific low back pelvic pain and can barely walk even though my legs seem okay. A couple of weeks ago I hiked miles everyday in our state forests now I am in pain walking around the house. I noticed my belly as feeling very squishy and even my thigh muscles are not as strong as they used to be. I can still do a sit up. I am in so much pain I went to the ER and they did nothing about the pain (no imaging) Gave me Motrin and sent me home. I am scared and desperate and can't take this pain anymore. I don't even feel I can advocate for myself. I haven't been formally diagnosed, but I feel quite certain and abandoned by the medical community. Sorry to unleash here, but this is scary. God bless you all.
 
Please read the stickies there is one specifically about not starting multiple threads. The posting guidelines are also in the read before posting sticky.

This sounds nothing like any ALS onset I have ever seen or heard of. At a guess, I would say explore spinal and gynecological issues.

There are a host of excellent medical providers in Massachusetts so if your pcp is not giving you proper care you need another one but they could order imaging for you. What has your pcp offered? You only mentioned the ED
 
So I saw my PCP and she has referred me to neuro, but they can't see me until May 31. I am literally having new symptoms daily. Currently feel weakness in all extremities, trunk and tongue. The fasciculatiions have become a constant fine buzzing literally everywhere which is most pronounced after I fall asleep and wake up to them on my neck and face. I wake with my Sahara dry tongue thrust out of my mouth and I believe my voice sounds different. I have two daughters that I am finding it harder and harder to care for. (They are teens, but sill have a lot going on sports, college tests, prom etc.). I was doing all this plus walking several miles daily. Now I am having trouble getting the basics done. Feeling weaker, slower daily. I don't think I can make it till May 31. Is it possible to advance this quickly?
 
It doesn't sound like ALS to me, and what is your hurry to find out anyway? If it is positive nothing can be done to cure it.
Al
 
When I was in a very bad car accident in 2000, I dislocated my TMJ and suffered a herniation at c-5, c-6. From that point on I had migraines and constant balance issues, including vertigo attacks. It got so bad I went to University of Pittsburgh Balance Center in 2005 and was diagnosed with cervicogenic vertigo, TMJ disfunction, and atypical Meniere's disease. They didn't think any of my symptoms came from the herniation, except the referred pain to my arm.

My point is that a simple incident like the one you experienced can cause lots of symptoms and ruminating about it only makes it worse.

After I got these diagnoses, I tried various therapies to resolve the issues and, to some extent, they worked. I had to learn to live and work with the ongoing symptoms and I did.

My advice is to stay off this forum and follow up with your health care providers. If you need support in the meantime, get a good counselor (I did and it helped a great deal.)
 
I guess I am worried that if it is ALS and rapidly progresses I would miss the opportunity to maybe slow it down with glutamine medication. I am beginning to feel like my left arm is not mine (missing things I'm reaching for and difficulty with manipulation. I am also noticing a "dimple" in my forearm area when I lift things and today while I was shaving my legs I noticed dumpling in my left lower leg when flexed as well. And my low back, forget about it. Feels so weak have to think about every step and it is also hurting me. I have fasiculations everywhere and my abdomen feels like it is having waves of spasm over and over. Nights are scary, all my limbs get stiff and the last couple of nights I awoke with my neck, face and even scalp buzzing. I turned to my side and it felt like my whole body was having almost a rhythmic buzzing. Bizarre. I just think it strange that a person can have this much disability and docs just say "see you in a month". I would rather get hooked in while I still have mobility. Seriously, they wait until you literally cannot move? I appreciate all of you tolerating me. I know you each have a lot going on and I truly to appreciate the opportunity to vent.
 
None of us is seeing ALS in your posts.

Best,
Laurie
 
I hope you are correct. I am responding while laying in bed after waking abruptly after brief drifting off. Nights are the worst. Symptoms always get worse. I fall asleep, but then wake up my limbs feeling like lead, my mouth is dry and I feel like I'm having trouble swallowing. Literally my entire body is foreign to me. Ever heard of ALS progress from asymptomatic to limb, trunk and bulbar in just six weeks? Sorry to be a pain, something is not at all right.
 
Thanks Kim, I have scheduled an appointment with a therapist. If this is hysterical then the human mind is far more powerful than I could ever believe and I apologize to all of you.
 
Janine, the mind runs most of the body. It is indeed powerful. Subconscious associations that you're not even aware of can bend your back, fill your stomach with acid, cramp your legs, dry your mouth, and even put hallucinations in front of you. Have no doubt about this--the mind can cause physical problems.

In reading your posts, it seems like you have no idea what ALS is really like, because you list a bunch of stuff that has nothing to do with ALS, and then you say you must have ALS.

I advise you to call/or message your PCP and relay your concerns so she can treat you while you're waiting for your appt.
 
I have seen my PCP. She referred me to neuro, but when I called them they can't see me until May 31. I am very frightened. I just woke up and the weakness feels profound in my arms in particular especially my left arm, also in my low back. I am very frightened because the symptoms have come on so fast and include so many areas even bulbar to some extent. I do have some sensory issues as well which I realize shouldn't be part of this (burning pain, lumbar and upper back and occasionally my feet). You guys have been very tolerant of me. Can ALS come on this fast? I felt the first symptom as low back/pelvic weakness in early April?
 
Sorry to come back without any new real info. How do I go about getting my doctor to recognize how fast I am deteriorating? I was incredibly strong and active. Taking care of my home, two daughters, three dogs, yard etc. Plus hiking daily in the nearby state forest. I can no longer walk more than a few feet to and from bathroom without feeling like my back will fold in half and I am having back pain as well (burning in nature like fatigued) My fasciculations are widespread; abdomen, back and very strangely under my chin and back of neck which actually feel like continuous vibrations. I am sure you all must get frustrated listen to people complain when your own daily struggles are so great. I just feel alone and scared. Not sure if I should try and wait till May 31 when I have an appointment with neuro, go to ER (that won't yield much) or continue to try and get through each day pretending nothing is wrong.
 
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