I began having health issues in the spring of 2010 and it has been a rollercoaster of symptoms and tests.
My very first complaint was a pain in my lower jaw and swelling below the ear. I thought maybe I had TMJ, so I thought I would wait to see my Dentist at my next cleaning.
About a month before my appointment I began having severe headaches and nothing seemed to relieve the pain. Then, out of know where fatigue started setting in. I began napping when I came home from work.
My Dentist didn't believe it was TMJ, but suggested I see an ENT or an Oral Surgeon. I saw the ENT a few days later and he ordered a soft tissue MRI of my neck, along with standard blood work. Results were negative.
I then chose to see the Oral Surgeon. He reviewed my dental x-rays and assured me that TMJ did not exist, but still any answers.
Next, I experienced chest pains, which resulted in two visits to my local emergency room and Stress Tests to boot. Heart and gallbladder tests were negative. My white blood count was slightly off count.
I saw a Pulmonary Specialist. He sent me for pulmonary tests and a sleep study. Results...negative, on the pulmonary. Sleep Study, not so good.
Next I get a Family Doctor...more blood tests. Now, I have an elevated liver count and he sends me for an ultrasound of my liver and gall bladder. Something was noted on my liver, so I get to see a Gastroenterologist.
Dr Gastroenterologist thought I need a Colonoscopy and an Endoscopy for safe measure. Results...normal.
Meanwhile, I am beginning to have joint pain, trouble walking and moments of forgetfulness.
I decide I need a new family doctor. New doctor = more tests.
He looks at things like Vit D, ANA and other tests I had never really heard of before.
Results...Vit D deficiency and elevated ANA.
New referral, I get to see a Rheumatologist. This doctor discovers a Vit B12 deficiency and my Vit D is still low. He does more detailed tests for autoimmune disorders, x-rays of hands and feet. Results...negative. He prescribes a mild muscle relaxer and naproxen. (I've yet to see that these medications have helped me in any way)
I stress to this doctor my aches, pains, inability to walk at times and he decides to send me for physical therapy for my knees. I didnít recall any x-ray or MRI of my knees. I contacted my family doctor and asked for a second opinion. He sets me up with a second Rheumatologist.
By the time I see the second Rheumatologist I have a body rash. This doctor gives me hope; she reviewed all my test results and complaints. I now go for another round of specific autoimmune disorder test and x-rays of my knee.
Results...negative. I am told it looks as though I may have Psoriatic Arthritis and we can start treatments soon, am I getting closer or what? I follow-up with an MRI and a Dermatologist referral.
The Dermatologist administers a steroid shot for the rash/itching and believes I may have an allergic reaction to my medication. He also confirms I have psoriasis.
MRI results show a possible tear of cartilage. Now I get to go to an Orthopedic.
Dr Orthopedic tells me my knees are fine, but writes a prescription for physical therapy.
I return to my Rheumatologist to start my treatment plan. She stops midsentence of discussing my symptoms further and tells me she doesn't believe it is Psoriatic Arthritis, but maybe neuropathic. I am the told we would not be starting treatment and I would need to see a Neurologist (I understand the side effects to any treatment plan and I agree with my doctor). What a bad day, I had such hope walking into her office. I was upset, but not so much with the doctor, but with this whole autoimmune / neuropathic situation.
I have read many articles, medical findings and forums like this one over the past few months to better educate myself on autoimmune disorders, now I am beginning that journey all over with neuropathic disorders.
I appreciate those that had the patience to sit through such a long read, but I am just trying to relate with you on my issues. I am sure I left out other specific symptoms or testing, but this was a challenge in itself.
Have you been giving a referral to see a neurologist? I would request one if not. I am waiting to see one because of a question of possible MS judging my symptoms as well as right body numbness, difficulty walking, thinking and memory problems, Vit D deficiency, etc. I show all MS symptoms except paralysis and total blindness. Believe I went through an exacerbation after I took a HOT bath to try and relax fibro pain. My PCP would not refer me until I ended up in the hospital and could not walk and kept wetting myself. I do not want to scare you but Vit D deficiency can cause a lot of aches and pains but it is also an uncommon/unrecognized symptom of MS. Continue to fight for yourself because noone truly knows how you feel except for you.
The Following User Says Thank You to upssamc For This Useful Post: WorkingDad (06-23-2011)
You did a good job of it and I was not bored reading your info. But my goodness you have seen a lot of docs. I've seen 3 neurologists and none agree on what I have. I could not swallow for a while, I get very weak, cannot walk sometimes, have lost my balance and get severe pain in my feet. Otherwise, I'm all right. However, likely due to the inability to swallow I was offered treatment with either Ivig or Plasma Exchange. Chose the latter. My swallowing has improved. But I don't know what I have. So alas, I am in the same boat you're in, many here are. None of it is easy. What is hopeful is you seem to be determined and you don't frustrate easily--good sign if it turns out to be autoimmune disorder. Deeply sorry you're a dad and have a family to provide for. That cannot be easy for you. But be hopeful; you're getting closer and closer to a dx. There is nothing like knowing who the enemy is and what you have to do to feel better. I wish you all the luck in the world and hope you'll soon have some answers.
The Following User Says Thank You to awlright For This Useful Post: WorkingDad (06-26-2011)
Thanks for the encouragement, awlright. I am planning on staying proactive, I have seen how this is the only way to get closer to answers.
I am having such a hard time to get into my family doctor, that I contacted the Cleveland Clinic myself for an appointment. I did not realize you could request an appointment at either the Cleveland Clinic or the Mayo Clinic without a referral.
I hope you are having a good weekend; we all deserve a break from our 'conditions' once in a while.
I believe I am going to post my story on the Neuropathy boards as well.