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 horrible 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.

What does your orthopedist say?
My story is not so similar, except the doctor running around stuff... but I got my physical therapist and my orthopedist to say to the neurologist that it was not a physical issue so that I could get the EMG and all...
Having had Cushing's, I know the steroids mess you up bad.
The docs use anxiety as an excuse when they do not want to think and they do not come up with an idea in the two minutes now that you are alloted. Try to research another doctor using a supportive doctor. Good luck.

I know what you are talking about. A person can have a low level of anxiety and function perfectly normal...but when the anxiety gets higher so does your BP and the pain that you are feeling along with eye flitches and pins and needles in your extremities. I had the worse anxiety attack I've had ever a week ago. I had to have my daughter take me to the ER. I was in tears balling my head off, I was mad, I was sad, I had all the emotions come at me all at one time and I didn't know how to deal with them...they turned into the worse moment I can imagine. My BP was 160 over 120. They put me on Ativan and after a while with a nurse talking to me and explaining things my BP dropped and so did the stinging pain in my extremities. I still had the other pains in my body the ones I live with every day but the sharp stinging pains around my eyes, head, hands, and feet all went away. Anxiety can really get painful if you let it go on with control. It can cause a feeling of having a heart attack too! Have you tried going to a chiropractor for your back pain? They have numerous things they can do for you, like ion heat, tens units to get blood to flow in the area that is weakened to heal, and they can provide you with medical fixtures to wear to help the healing processes. Just an idea. I hope all goes well with your appointment and don't "worry" so much.

My daughter has CMT and was hit by a car while walking to school last year. Since then she has had more CMT symptoms arrise. She suffered 2 fractures in her T11 and L5 as well as deep tissue damage and a bulging disc. Has anyone heard of trauma causing progression in neuromuscular diseases such as CMT.

Hi.I am Brandi.I am 27 and I am experiencing the same problems. when I thought wow this is so me..
I have been having really bad anxiety attacks for the past 5 weeks. I have always been a little anxious,but I am now starting to have full blown panick attacks. I have called 911 several times because I feel like my throat is closing,I can't breath,my heart is racing out of my chest,and my hands and legs start to feel really weak and tremble a little. I have been to my primary so many times, and she is now telling me that she won't see me any more until I see a phyc. I started going to her for breathing problems,bad neck pain,(burning,tingling)headaches,chest pain,trouble breathing,swallowing..she told me it was anxiety..I didn't believe her so i went to see another doct.same thing..I have been to the hosp. 5 times in the last 5 weeks, my medical expenses are getting out of control,my husband is getting upset with me..and I still don't have the answers I want to hear. I have been to an ent for my throat closing. I do have acid reflux and they tell me my throat feels like this because of that and my anxiety.They put me on ativan,but I have anxiety about taking meds too, I think I am going to have an allergic reaction to meds, so my brain starts to tell my body that all these things are happening when they really aren't.then I go into full blown panick attacks.I don't know what to do any more either, because all these doc just push me away with the anxiety bit, when really, I think there might be more to it.why is my anxiety so bad? It just came on, what caused it to? they have no answers..I am scared and just want to keep looking for the right doctor to fix me..I think that is what we both should do. I have had blood work taken 4 times in the last 3 weeks,tested me for cushings.lyme disease,ect..now tonight I wake up and I feel like I can't breath, and my arm just under the palm of my hand is weak and shakey.The worse ideas pop in my head of what it is,,so I automatically think I am getting parkinsons disease!!...but really it could be my anxiety..I just don't know..but i do know I am scaring the hell out of my self, I always think of the worse things that could be wrong with me,I think I am going to die,and all of this is signs if you look it up any where, or see 100 doctors, they are all signs of anxiety attacks..I know I have rambled on and haven't really answered your questions,but I think that we should both find a good doc. one that won't brush us away, and one that gets to the bottom of this..I don't want to take meds for this, I want to know a safe, natural way of getting rid of this problem..my mom has all of these problems too, and she swears it is her anxiety..so hopefully we can both believe it is and try to get help for that, or keep looking for just the right doctor..everyone thinks I am losing it!! my mother in law took me to see a natural healer, it worked for me a little because she taught me how to breath and talk my way out of these attacks..I know it sounds weird to ask because we don't know each other, but do you want to talk over the phone? I can't type all of what I want to say!! let me know and good luck I hope you feel better. I pray to GOD that I will soon.

Hi.

I saw the frustrated with doctor's post, and decidied to pop in from the Parkinson's Forum. I too went through frustrations with my doctors. It seems that when things don't go easy for them, they pull the "it's all in your head, or you are having anxiety attacks". My primary care doctor tried that with me when I first developed an obvious tremor in my right hand. He put me on Toporal and something else to calm me down. My normal BP was at the time around 120/70. It never went up, and it never went down. On the Toporal, it dropped to 110/60 and I felt tired. The tremors and the stiffness never went away.

Eventually I ended up was a neurologist who diagnosed focal dystonia as the problem. He did this in about what seemed like 30 seconds into the 12 minute consultation. He handed me a printout off of the dystonia foundation website, and told me the only treatment is botox. I put the brakes on then and said "wait one minute before we jump to that" so he ran some tests to confirm and put me Klonopin, which did nothing for the spams, tremors, stiffness, and rigidity. He was also miffed because I questioned his initial diagnosis.

After this guy messed up too many reports back to my PD, I got a referral over to the Lahey Clinic where they have a top notch neurology department. My current neurologist works with me to find the best treatment program, and so far we're both doing well.

Out of all this, I've discovered that unless the patient pushes issues and questions quick answers, then nothing will be done to solve the problem. Unfortunately we have to be our own health advocates, and we have to push. I mean push hard to get the right answers. Eventually you'll get there, but it can be a rough road in the process.

One of the biggest things that can help is getting into a teaching hospital instead of the local clinic. My PD told me this when I suggested I go into Lahey Clinic for this. He said there they will spend the time with the patients rather than pushing them through the turnstiles, I mean drs. cubicles, every 12 minutes. He went on to say that the local clinic doctors really don't have the time to deal with the more complicated things that don't fit the "normal" buckets that they can put there resources into for the quick diagnosis to push out as many patients as possible.

So good luck to you here. Welcome to NeurTalk, and hopefully you'll find a doctor that can help.

John

i totally agree with the posts doctors are too busy to really sit and talk to pt. i had a ACDF in march 08 and complained of continuous chronic pain to neurosurgon and instead of him listening he turned it into a psy issue. i was so upset. i searched the internet and found a web site The Bonati Institute they reviewed my MRIs for free and sent a detailed letter explaining what is really wrong. come to find out my neurosurgon missed a herniated dics with encroachment at 3 different disc as well facet damage. when facets are damaged they cause alot of pain. also myofacial syndrome can explain alot about pain. check these web sites out.

Reading all your problems with docs makes me feel like I'm not alone in the world!!
I have had one thing after another for several years now! and this latest round of myofacial issues and now my numbness in the arm and hand I'm getting ready to go off the deep end! This has been going on for almost a year one thing after the next and I've been in physical therapy twice a week since May! They get the myofacial issues settled down and the arthritis flares, then in October my left hand started going numb and I got tremors in my hand. I have twitching in my face and pain in both arms and sudden tremors in my legs at night and have seen the GP, the rheumotologist again and now a neurologist and my ENT and nobody is giving me answers. The will tell me what I don't have but not what I DO HAVE! Now the neurologist hs me on a beta blocker for the hand tremors which is helping some and is having the PT do the treatment for the thoracic outlet syndrome which is killing me! Then I go back on the 16th for the EMG tests.
I'll give him a bit before I go for a second opinion but I just don't know anymore! He says it's not Parkinson's and he doesn't think it's MS but won't know until the EMG results.
Add all that in with my chronic hives, rampaging sinuses again, anxiety issues and fear of losing my job any second because of all the cut backs at work and I'm a basket case!
I'm hoping to gain some real inside here.
Thanks for listening!
B

How are you doing now? It's been a while. I have had many of the same symptoms you have, including acute incapacitating anxiety. I'd like to chat back and forth as I think I could give you some guidance but hesitate at this point since you haven't posted for a while. What's going on now? email me if you'd like
Paul

Can I ask how old she was when she was hit. I was in a caraccident in my 30's and CMT symptioms started looking for someone else with same situation