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rosemarieh

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Oct 2, 2008
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Learn about ALS
Country
US
State
Oregon
City
Portland
Here’s my story:

APRIL –Took a long walk- 3 miles with 30 lb son in backpack. This after a period of being relatively inactive, had not been to the gym for several years, but I have fairly active job (work in stockroom for a manufacturing company) I notice my lower back is very sore and attribute it to a horrible flu that the whole family and workplace has (high fever, cough, body aches etc) notice horrible back pain whenever I cough or sneeze. The flu gets better but the back pain never really goes away 100%, I notice it when I am sitting and after walking a lot. I don’t visit the dr for it though. Reminds me of several years ago when I fell down and cracked my tailbone, several months/years of pain, told nothing could be done to “fix” it.
May-July –I have a few bouts of sciatica pain in my right side.. something that bothered me with both pregnancies. Back still hurts on and off.

July- Lifted sleeping child to carry up the stairs and felt something “pop” in lower back. Was in pain all night with spasms in back and down both legs. Go into ER next am, told it was likely a herniated disc and follow up with Primary Dr. Follow up with Dr and sure enough MRI reveals small herniation L5-S1 pressing on right siatic nerve. Told it would likely get better with PT. Start PT twice a week. Taking Tramadol ER 300 mg once daily and vicoden for pain. Have some good days pain gets better-barely noticeable don’t have to take meds –some bad days pain wise and back feeling so weak and do need to take meds. Am supposed to be on “light duty” at work.

Aug. 16 Had some sort of long-lasting Panic attack. Started around 12:45 pm as I lay down to go to sleep. Heart pounding, burning in chest, feeling like I was dying, etc,etc. Never experienced this out of the blue before. Went to hospital and everything okay just fast heartbeat 130 bpm. Slowly started to calm down and feel better. Was given Ativan and sent home around 3:30-4 am. I am convinced at this time that my pain meds and caffeine habit caused the “panic attack” and quit everything including smoking. Have two more episodes of chest pain follow up with PD and prescribed Atvian and an SSRI which I take only once. Start taking 1mg Ativan daily because I am feeling like a constant panic attack is coming on. Back pain still bothering me so I am referred to pain clinic for an Epidural steroid injection. No more palpitations just chest pain.

Aug 22, a Friday- Epidural steroid injection of celustone and licodane done with fluoroscopy at L5-si and go home and rest. Have to take pain meds again afterwards Wake up in am feeling great. Not much pain- feel like being active. Go bike riding on Sat. Back pain is much better
Sunday-wake up feeling like pulse is racing. Tons of energy. BP which is usually normal is up to 137/85. Call clinic and ask if this is normal, told yes and could last for a bit. A bit turns out to be all week with chest pain, increased bp 147/90 and constant hr of 86 bpm. Tingling in right arm and hand. Go to urgent care and told “this is your “panic” acting up, you need to be on an SSRI. Call pain clinic back and ask if this is still normal they say yes, take Ativan try to relax and let it go. A horrible depression sets in, feel horribly sad and like crying every minute. This goes on all week. Taking 1 to 1.5 mg ativan daily plus Iprofen for back.

Saturday morning Aug 30 I notice heart is not beating as fast and blood pressure is normal. Start to notice my legs muscles are constantly spasming/ twitching. But not feeling so bad as last week. Depression eases up. Twitching continues and back pain returns worse then before Epidural steroid injection. Both sides, not just right. Stop taking atvian. Go into Dr for increased back pain. He notices I do have increased spasming in both legs Say to take flexeril and start on oral steroids. NO way am I going to go on more steroids after the worst week of my life. Start taking Iprofen 600 2-3 times a day, asprin and Tylenol. Start losing faith in Dr’s and pills. Back hurts worse then ever now. Muscles in back and both legs constantly twitching. I stop going to PT . Blood work shows slightly low potassium so I increase my bananas,etc and my level goes back to normal but twitching stays. All other blood work is normal. I feel shakey all over constantly, hands shake 24/7.

One week later Sept 5. Go back to Primary dr for increased back pain, constant spasming, twitching, tingling in hands and feet,stiff sore neck, feels like my head is heavy, low grade fever. Start to get tunnel vision and have trouble concentrating She tells me this is all part of my anxiety and to start taking an SSRI. First dose of SSRI brings on a horrible headache, had to go to ER. I notice increased spots and floaters in my left eye and go to eye dr. They find nothing wrong. I notice at times I feel like I can’t take a deep breath but attribute it to my “anxiety”. No more chest pain so that is a good thing.

Next week, after another headache, feels like it hurts to hold my head up and a band is being wrapped around my head. I go back into Primary dr. She refers me to Neuro. I go to see him on Sept 19th. Also at this time referred to Rehabilitation specialist for my increased back problems. Can’t get an appointment until Oct 6th.

Visit to Neuro on Sept 19th he checks my b12 level, etc. “normal neurological exam” sends me for MRI of head which is normal. I start to have increased tingling in my hand especially right hand and starts to feel weak. Start to feel a constant weakness in both hands and legs and feet. Tunnel vision really bothers me. Getting one bad headache a week feeling like my neck cannot support my head. Start to feel a tingle in my tounge, like an electric shock ,Bad leg cramps and pain wake me up all night. It hurts to have any pressure on my legs at all I am sleeping 3-4 hours a night max.

Go back for follow-up with Neuro this Monday and he insists I have no weakness and my exam is again normal. Says “you do not have a neuro-degenerative disorder” and you need to get past this and deal with your anxiety. Refuses to do EMG or nerve testing.

I don’t understand how anxiety can cause 24/7 muscle twitches all over, tingling and numbness and horrible back and leg pain. Some twitching in my arms too. Legs, arms feel weak. Hands are weak and it’s hard to grab papers. This just started Sept 19th. Right hand is cold all the time and gets a strange burning pain in the last two fingers. Hand tremors constantly. I have lost 15 lbs since Aug. I am trying to eat the best I can to keep my strength up. My jaw feels sore. I swallow a lot of air when I eat and burp a lot. I also have acid reflux. My voice is hoarse and I have started smoking again due to nerves. My legs are so stiff when I stand and I wake up 2 am every night and cannot go back to sleep. Hand weakness, 24/7. Eye floaters and tunnel vison. Definitely have anxiety and depression at this point, I don’t know what’s wrong with me, I am missing work and am exhausted and scared. Pain all over.

I feel like I am being brushed off by the Dr’s. I don’t know what to think. At first I thought it all stemmed from the steroid injection. But then looking back I wonder if my herniated disc was caused by muscles already being weakened by an underlying MND the whole time. I am only 28 and “young” to have back problems. I have two young children. I don’t even know what to do from here. I have my appointment on Monday with the back specialists and they do EMG testing there so I am hoping for more definitive answers. I am usually a logical person and I was studying to get into nursing school so I know something about how the human body works. I don’t understand how all these awful physical symptoms could be caused by anxiety. But, right now I am so overwhelmed and I am hoping someone can offer some guidance or ideas on what could be going on here or any similar experience. I appreciate any insight so much.
 
Oh I want to add that my neuro exam lasted about all of 5 min. It seems like I'm dismissed as being a huge anxiety case before I'm even examined. I know that its not anxiety making my legs and back ache and spasm all night long. I asked the neuro if my disc herniation could be causing the symptoms in my legs and he said no way, it is just a small herniation. Then what is? I just wish that if Dr's don't know what is wrong with you, then they could just admit that they don't know, and follow up with "but we will find out what is" not just dismissing you to go home with tranquilizers.
 
same reaction to steroid injections

Hi, I can't believe I have finally found someone with such a similar experience to me - the Doctors would have let me think I have been going mad. I had steroid facet joint and nerve block injection in my spine in 2003 for back pain. Have had severe headaches, and muscle twitching all over my body ever since. This comes and goes to varying degrees but this year I've also started to get tingling, random pains and tremor. Obvoiusly this would cause a lot of anxiety which I'm sure doesn't help but I feel the steroid injections are definately responsible as I have never suffered anything like this before then. After the injections I saw a back specialist who said I have never had anything wrong with my back- just needed physiotherapy to strengthen back muscles.
Have had MRI of head and spine and EMG, all normal. No-one seems to believe anything is wrong. Hope this may help, let me know if you find out anything and I will do the same.
 
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