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Trying to find answers

Hello everyone :)
This is my first post. I just joined the community. I am a 25-year-old woman. My story is a little strange, and I'm wondering if anyone else out there can sympathize with me.

Almost four months ago, I experienced the beginning of my symptoms. One night as I was sitting and chatting with my boyfriend and his family, a sensation like something cold hit just below my brain stem then trickled down my back, and all of a sudden, my heart started pounding and I was gasping for breath. My extremities began to shake uncontrollably, and I laid down immediately.

The feelings eventually subsided minutes later, but ever since then, I have been experiencing reoccurring tingling in my extremities. When I sit down to use the toilet, my legs immediately begin falling asleep. When I sit down to drive my manual truck, my legs begin tingling, especially my feet and ankles. When I lay in certain positions, the my arm and leg will begin to fall asleep immediately. The only time I feel okay is when I'm up and walking around, and even then sometimes, the tingling begins without provocation. Occasionally I will feel the tingling sensation begin in my cheeks and cross over the bridge of my nose.

For starters, I have no insurance. But I was terrified of what was happening. The night that settled everything: about two weeks after the first occurrence, I was lying in bed next to my live-in boyfriend, and I sat up. Suddenly, a bolt of pain shot through my chest, so strong that it put me back down. I tried to sit again and felt the pain again. Suddenly my extremities began to tremor uncontrollably; for roughly five minutes, I laid on my back, and my arms and legs shook like I was freezing to death. My frightened boyfriend took me to the ER.

Nothing as intense as that has happened since, but I still EVERY SINGLE DAY experience sensations of tingling, of numbness (but not total loss of sensation), and of an odd burning feeling. I also have a pain/weakness in the upper part of my left arm that has lingered for several months.

Twice I went to the ER since I did not have a primary care doctor and was having difficulty getting an appointment at the local discounted clinic. Twice the ER doctors could find nothing physically wrong with me. Both times, blood work was done - everything came back normal. Both times, an EKG was performed - again, results came back normal. The second time, the doctor decided to try a chest X-ray - and found nothing abnormal. The first DR diagnosed me with parathesia and sent me off with Flexeril, which I briefly took until I realized it did nothing for my symptoms. The second DR pumped me with Ativan, reassuring me the symptoms would ease off with some anti-anxiety meds.

I finally got into the clinic about two and a half months ago. The DR I had been seeing there checked my urine, deemed everything with that okay, then pulled up the records from the hospital. Without doing any additional testing of his own, he diagnosed me with anxiety and prescribed me Paxil. I took the Paxil for a day and had a severe allergic reaction to it - I mean, whole body started burning, face and arms became swollen, entire body began itching, and my pupils dilated like giant black saucers. Needless to say, I didn't take any more and returned to the PCD.

He decided to go with the Ativan. 1 mg, as needed, for anxiety. I have never believed in my heart that this was psychological. The doctor kept telling me the sooner I accepted this tingling was in my mind, the sooner I could overcome it. So, thinking several doctors had to be on to something, I began to take the Ativan without my doctor actually explaining to me what it was. I had no idea it is a controlled substance, nor that I would become addicted if I took it for a prolonged period of time. And, I hear benzo withdrawal is utter [edit].

After a month, I told my PCD that I didn't believe the Ativan was working. For some reason, he was happy with that answer, and said that I simply needed to increase my dose. I pleaded with him to refer me to a neurologist. I told him that once all possible medical conditions were ruled out, THEN and only THEN would I accept this feeling is psychological. He agreed to refer me, but wanted me to go see a psychiatrist.

I went to the psychiatrist's office and met with a therapist, who said he didn't want me to see the psychiatrist until after my neurology appointment. He agreed I should rule out all possible physical causes before we began to treat for psychological symptoms.

A month went by, after I had called several times inquiring about the neurologist appointment, with the nurses telling me I needed to be patient. Then one day a nurse finally told me there was nothing on my chart indicating I was to see a neurologist. At this point, I am beyond angry. My doctor had increased my daily Ativan dosage to 4mg a day, 1mg every six hours.

I sleep on a blow-up mattress on my bedroom floor because I cannot sleep in my bed without beginning to go numb. I cannot sit on the couch next to my boyfriend without starting to go numb. I cannot even have a bowel movement without my legs falling entirely asleep. Fed up, I decided to see this primary care doctor one more time.

That was this past Monday. The doctor said I needed to increase my Ativan - again. Now he wants me to take 6mg a day, 2mg/3x's daily. I want OFF this drug. I want to taper myself off slowly since I can have seizures potentially if I quit cold turkey. I do not feel the Ativan is helping. If it is, it's because it's dulling my senses. I feel mentally slower, and my memory is being affected.

The doctor's office called me with an appointment for the neurologist - February 24th, 2016. Three months from now. And I was "lucky to get in that quickly, and only did so because there was a cancellation".

My friend suggested I try a chiropractor in the meantime. Went to the chiropractor on Wednesday. Finally, this chiropractor said, "Someone needs to x-ray your spine." Well, the x-rays showed misalignment in my neck and lower back. He showed me the x-rays, and drew lines to show how my back should be aligned to show how disproportionate my own spine was. He said it "could be indicative of pinched nerves". But that's all he told me. He said I would benefit from alignment, so I allowed him to crack my back and neck into place. I don't feel better after doing so; if anything, I feel slightly worse. I now feel tingling underneath my left shoulder blade that I didn't feel two months ago.

I'm afraid of what's happening. I'm afraid of this loss of sensation. It is greatly interfering with my life. I feel fatigued, I feel hopeless. I'm afraid that in the three months of waiting for the neurologist, things will get worse. I don't know for sure if I have pinched nerves. I don't know what's going on. All I know is every morning I wake up with at least one of my extremities completely asleep. I can't even sleep next to my boyfriend because the bed makes me uncomfortable (we've had it two years and it never did that to me before). I can't sit anywhere for prolonged periods of time. My brain feels dull, and sometimes it's like I can't focus. I'm forgetting things - some days I will wake up not able to remember what happened the night before. I do not drink. I quit smoking cigarettes a year ago. I quit caffeine when all this started happening in an effort to do whatever I could to help my body.

I don't know what to do. I feel so alone.

Welcome to Spine-Health

One of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. It is so very difficult for anyone to respond when we do not have enough information to go on. This is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

So many times we read about members who have different tests and they all come back negative. The more clues and information you provide, the better chances in finding out what is wrong, The fact that your test results are negative does not mean that you are fine and without any concerns. Many times it takes several diagnostic tests and procedures to isolate a specific condition.

Here are some questions that you should answer:

  • - When did this first start?

    . Year, Your age, etc
- Was it the result of an accident or trauma?
- Are there others in your family with similar medication conditions?
- What doctors have you seen? (Orthopedic, Neurosurgeon, Spine Specialist, etc)

  • . Which doctor did you start with? Ie Primary Care Physician
    . Who are you currently seeing?
- What Conservative treatments have you had? Which ones?

  • . Physical Therapy
    . Ultrasound / Tens unit
    . Spinal Injections
    . Acupuncture
    . Massage Therapy
- What diagnostic tests have you had? And their results (MRI, CTScan, XRay, EMG, etc)

  • . Summarize the results, please do not post all details, we cannot analyze them
    . How many different tests have you had over the years? Similar results?
- What medications are you currently using? (details, dosage, frequency, etc)

  • . Name of Medication
    . How long have you been using this?
    . Results
- Has surgery been discussed as an option? (If so, what kind)
- Is there any nerve pain/damage associated?
- What is your doctor’s action plan for treating you?

Providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

Please take a look at our forum rules: Forum Rules

I also strongly suggest that you take a look at our FAQ (Frequently Asked Questions) which can be found at the top of the forum menu tab or by going to FAQ There you will find much information that will

  • - Help you better utilize the Spine-Health system
    - Provide pointers on how to make your threads / posts
    - Tips on how to create your avatar (your picture), posting images, etc
    - General pieces of valuable information

Please remember that no one at Spine-Health is a formally trained medical professional.
Everything that is posted here is based on personal experiences and perhaps additional research.
As such, no member is permitted to provide

  • - Analysis or interpretation of any diagnostic test (ie MRI, CTscan, Xray, etc)
    - Medical advice of any kind
    - Recommendations in terms of Medications, Treatments, Exercises, etc

What could be good for someone could spell disaster for another.
You should also consult your doctor to better understand your condition and the do’s and don’t’s.

It is very important that new members (or even seasoned members) provide others with details about their condition(s). It is virtually impossible to help another member when all the details we have are

I’ve had this for years, it hurts, I cant move my shoulder – what could this be, what treatment should I get?

Diagnosing spinal problems can be very difficult. In many ways it’s like a game of clue. Especially, when the diagnostic tests come back negative – no trouble found! Then it’s up to the patient and the doctor to start digging deeper. The doctor is like a detective. They need clues to help them move along. So, you as the patient need to provide the doctor with all sorts of clues. That is like it is here. Without having information about a condition, its impossible for anyone here to try to help.

Specific comments :

Personal Opinion, not medical advice :

--- Ron DiLauro, Spine-Health System Moderator : 11/19/15 21:16 est



  • SavageSavage United StatesPosts: 5,446
    You stated symptoms stated four months ago.
    And since they are continuing with newer symptoms, I would try to keep track of your symptoms, ER trips and doctors opinion and treatments, X-rays, etc...with dates.
    And , also, are you ever pain free? ......jot it down.
    That was helpful for me to be more clear with doctor appointment.

    Not only with your primary, but for upcoming neurologist appointment.

    You mention you don't like the Ativan. Please discuss with doctor before you do your own taper and getting off the med.
    Sometimes it does take time for our bodies to adjust and the side effects go away....sometimes not.
    But let doctor decide, maybe change to lower dose or change med altogether.
    But doctor needs to be part of decision, in my experience.

    Your mind"feeling dull" may or may not be due to medication. For me, often times due to my trying to control chronic pain.
    It feels like my mind can't be bothered with the incedentals of life, while areas of my body screaming loudly.

    Noting chiropractor made pain worsen, is also good information to share with doctor. It may be good to stop chiropractic treatment until you have better idea of cause of your symptoms, so adjustments do not worsen anything.

    Hopefully, you are still seeing therapist, even though not psychiatrist at this time.
    They can be very helpful with coping techniques while going through any transition in life.
    Bothersome symptoms without cause can bring on anxiety, which doesn't help the pain.
    Your decision to quit caffeine sounds like a good one.

    It can take time for doctors to rule out conditions and to have better idea of cause of your symptoms.
    I would try to not worry about what can happen in future...."while you wait for neurologist appointment."
    It really doesn't help anything, and may cause you undo stress, which again, doesn't help the symptoms.

    It very good you will be seeing specialist. He may do different kinds of testing to aid evaluation of symptoms.
    Try to take it a day at a time.

    You may find it helpful to use search on this site, upper right on page.
    Type in your concerns and you may be led to current or older posts, article and or videos.
    The information may lead to other questions to jot down for doctor.

    There are also posts re, how to prepare for doctor's appointment.

    Spine-Health Moderator
    Please read my medical history at: Medical History

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