Aa
A
A
A
Close
Undiagnosed Symptoms Community
25k Members
Avatar universal

Left Doctors Office In Tears,,,Doc was cruel to me

My doctors treat me like they don't care.  I am crippling up and it is gettting worse each year!  (I can not stand or walk too long or climb steps), and I feel ill and am in pain every day, and tremble sometimes.  I also get rashes that last less than an hour, and have severe morning stiffness in my back, and neck.

I sent an e-mail to my neurologist saying that I found out my blood tests could mean I had muscle damage.  

On Monday, 6-22-09, my neurologist did not answerr my questions about my muscles. She was mean to me, because I questioned her diagnosis of Myasthenia Gravis (MG), and I wanted to know if I actually had MG, because she said it is "painless" and causes "fatigable muscle weakness."  And I told her I have "fatigable muscle PAIN, stiffness and paralysis," first in my legs and now in my shoulders.  She yelled at me and said I have one minute to make up my mind if I want her to treat me for (MG), because I would have to take immune suppressants for the rest of my life, and the side effects are NOT benign.  Otherwise I should get another doctor.   The prednisone (20mg) she gave me did not help  my muscle pain and heaviness.  It made me sick.  And I think it gave a stomach ulcer, so I stopped taking it, after a month!

She blamed all my symptoms on MG, and blamed me also...and said "You did not have the CT scan of your chest, and people with MG could have thyoma (cancer of the thymus) and I might need to have a thyectomy!"  I told her a CT scan gives the equivalent of 220 X-rays all at once, and I have had over 97 seperate X-rays in the past few years already!  And now a hematologist is telling me I might have cancer of my bone marrow!

I told her I have tremendous pain and weakness in both knees when I try to get out of the bathtub.  (I am basically disabled in both knees, and have to use a bathtub chair now.)  And the bones in both legs hurt when I stand up and put weight on them.  My muscles feel heavy, like they are made of cement, when I use them.  And it is hard to move my body, after awhile!   My upper arms hurt when I wash my hair, and my neck is stiff all the time!

When I left, I was completely broken down, like I always am by the doctors, and was almost in tears!

This neurologist had ordered two blood tests for MG, (an AChR test which was positive-1.2, and a MUSK test that was NEGATIVE).  A doctor in another MedHelp forum said a single fiber EMG test would confirm the diagnosis, but she NEVER ordered a single fiber EMG!  She ordered a different kind of EMG, instead.

At my appointment she had me press my arms and legs against her hand as she pushed against me.  But she DID see that I could NOT stand or walk on my toes, and did nothing!  And when I handed her my "Activities of Daily Living Assessment Form," she returned it!

I have been given the run around for years!  I was sent to other doctors including a rheumatologist and a hematologist, also.  All the doctors treat me like this is a circus.  One doctor said I have ataxia and an intention tyremor (when I sat on the floor and showed him I could NOT get up!)  So he ordered a blood test for VD, and it was normal.  Afterward, I googled ataxia and intention tremor and found that those are symptroms of Multiple Sclerosis!

Three months ago the hematologist said he thougfht I had bone marrow cancer because I had traces of protein in my blood.  (He called it monoclonal gammopathy.)  And he said they found it by accident, because they were not looking for it!  So what WERE they looking for?  I started to wonder what tests I REALLY needed and what the doctors were overlooking!  He told me he was ordering follow up tests and I wanted to know what he was testing me for.  He said to call his secretary.  Bur she would not tell me.  She said "Is there any reason you want to know?"  So I said "Is there any reason you don't want to tell me?"  And she said it is a long list of blood tests, and she can't read the whole thing over the phone.  So I said, "Why can't you print it out and I will come upstairs and get it!"  And she said "Are you in the hospital?"  And I said "YES!  I am using the phone at the service desk.  Well...this conversation went on and on, and she finally said she would fax the list to the downstairs desk.  

So why do my doctors treat me like they own my body and will not tell me anything they are doing to me?   Don't I have a right to know???  I have stories like this from ALL my doctors.

Well...now the hematologist has changed his mind and said he did not think I had cancer, because the first blood test showed protein in my alpha region, and the second blood test showed protein in my gamma region.  (I do not know what any of that means, but I think the doctors are playing games with me.)  But he has ordered another set of tests for July!  And the neurologist  said the immune suppressants she wanted to give me would target my bone marrow!  Why my bone marrow?  And the hematologist's nurse said I would have to take chemo pills!  

And the rheumatologist said that I have osteoarthritis in my neck, back, hands and feet.  X-Rays showed Osteoarthritis in both hands, both feet, and that my patellas (knee caps) are spuriously elevated.  The MRI of my spine showed degenerative disc disease at every level of my spine including neck, thoracic and lumbar, and multi-level hamangeomas and vacuum phenomenon!  And the doctor said my MRI was normal!?  Is it normal to have OA in so many places when I am a female age - 56?   Could I have an undiagnosed systemic disease?  I also have sores in my mouth.  (I used to have them 50 years ago when I was a child, and now I have them again.)  In the mornings I have severe sacroiliac stiffness.

The rheumatologist said he does not think I have a rheumatological disease.!  And he NEVER diagnosed why I have SEVERE morniong stiffness in my sacroiliac and neck, that has been getting worse for years!  So I think the doctors want to cover up their mistakes, and are not telling me the truth.  

Does anyone know what could be wrong with me?  I am trying to help  myself!  Are there any illnesses that do not show up in the common blood tests (CBC, MET, TSH), which were basically normal.  (My abnormal tests were:  CCP-30, ANA by EIA method-2.9, PTH-66, CK-236 (normal  the next time it was tested), LDH-327, Blood, alpha 2 globulin-.23, Urine-Albumin, alpha 1, alpha 2, beta and gamma protein.)  I also have untreated high blood pressure 155/92 and hyperlipidemia.

The hematologist said my abnbormal LDH test "did not mean anything...it is like a check engine light."  What does that mean?  If my abnormal blood tests don't mean anything, then why is he taking them every three months?  

Could I have LYME disease?  I had a rash on my left inner ankle in 1991, and did not go to the doctor because I did not know about Lyme disease then.  I asked my PCP and she said "Oh, Lyme is not present in Ohio...well, how can she be sure."  So I practically begged her and she ordered a Lyme test.  Then I researched it and found out I need a WESTERN BLOT Lyme Test to diagnose late stage Lyme Disease, and the test she ordered was NOT the Western Blot Test!

I lost three jobs in the past few years because of my disability and now I am underemployed as a part time file clerk.  I have to find a better job, and can barely do this job!  I am at the mercy of the doctors who do not diagnose me.  I take public transportation because I can not drive anymore, and I have trouble getting on and off the bus!

Why am I crippling up?  Why am I sick, with rashes and trembling?  Why do my muscles stiffen up with burning pain when I use them?  Please help me...someone.

Jean-ill


4 Responses
875426 tn?1325532016
I'm so sorry you've had so much frustration with doctors.  You don't need to have a cat-scan to get pictures of your thyroid... I don't know why that doctor didn't suggest an ultrasound, which is common to order for picturing a thyroid.  I would definitely look around for a better doctor.  I am reminded of the story of the person in the Bible who had suffered at the hands of many doctors and Jesus healed them.
File clerking is definitely not an ideal job for someone with joint pain.  

Did they test your GFR blood level to see if your kidneys are functioning properly?  One thing that can go wrong when kidneys aren't functioning the way the should is high blood pressure.  Another is significant protein in your urine.

If you have been having consistently high blood pressure levels, more than just the one reading you mentioned, your doctor has been negligent in not treating it.  

You mentioned MS- I hope you get tested for this.  Also, have you been tested for:
Lou Gehrig's disease (ALS)?  
lupus?
fibromyalgia?

They might be afraid to try the cholesterol fighting medications, as they can potentially give muscle problems.  Has any one ever suggested the mediterranean diet?

Found this info on osteoarthritis on about period com site (they site other sources) and I honed in on generalized osteoarthritis, since it mentioned multi-sites for the arthritis including the spine (don't know if you have that kind, of course):
"Question: What Is Generalized Osteoarthritis?
Generalized osteoarthritis is yet another subset of osteoarthritis. Most people know the meaning of primary osteoarthritis or secondary osteoarthritis, but generalized osteoarthritis is a lesser known term.

Answer:
Subsets of Osteoarthritis
Primary osteoarthritis is characterized by joint pain, stiffness, limited range of motion, and weakness. Primary osteoarthritis is also referred to as idiopathic, meaning, there is no known underlying or predisposing cause. Primary osteoarthritis is recognized as the most common form of osteoarthritis.

Secondary osteoarthritis has an underlying or predisposing cause. The underlying conditions that cause secondary osteoarthritis include injury, overuse of a joint, rheumatoid arthritis or other arthritis-related conditions, obesity, and more.

Generalized osteoarthritis, also referred to as primary generalized osteoarthritis, is characterized by involvement of three or more joints or groups of joints. Most commonly, generalized osteoarthritis occurs in the spine, knees, hips, base of the thumb in the first CMC (carpometacarpophalangeal joint), tips of the fingers, and big toe. The wrists, elbows, and shoulders are typically not involved in generalized osteoarthritis.

Other Facts About Generalized Osteoarthritis

A gene defect that causes primary generalized osteoarthritis has been discovered.


Generalized osteoarthritis develops spontaneously.


Generalized osteoarthritis is more prevalent in patients with advanced knee osteoarthritis than in patients with advanced hip osteoarthritis.


Older women are more affected by generalized osteoarthritis than any other group.


Some researchers believe there is a correlation between the presence of Heberden's nodes and generalized osteoarthritis."

Having all the stress you've been under could have triggered the sores in your mouth.  Have you tried plain yogurt on them for five minutes w/a spoon three times a day?  Something like that was recommended to me and it helped.

Have you tried Sam-E by "naturemade" brand?  It is supposed to help joints, mood, inflammation and liver health.  I have taken it for years.  It is not cheap though.

Have you tried fish oil or flaxseed oil capsules?  I take the flaxseed oil capsules, because I don't like burping up fish flavor.  It is supposed to be good for inflammation and mood.

Have you tried acupuncture?  I know this can be expensive too, but I saw a news piece on tv where it had been scientifically studied and proven to help knee arthritis.  If you have insurance, you might check to see if they offer a pain management program that offers acupuncture treatment.
351246 tn?1379685732
MEDICAL PROFESSIONAL
Hi
Thanks for writing to the forum!
I am really sorry to hear about your experience with doctors. I think it will be best to talk to your PCP and review your symptoms. PCPs have a very broad outlook when it comes to diagnosis and can help guide you better.
Your symptoms could be due to rheumatoid arthritis or even osteoarthritis. Both are very crippling if left untreated. Both cause unbearable morning stiffness. Your blood reports too go in favor of rheumatoid arthritis. Please consult another rheumatologist once and also an orthopedic specialist.
Also get your parathyroid glands function tested. Imbalance of calcium, phosphorus and Vitamin D can be very harmful for bones.
Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!
685562 tn?1447158831
Go find a LLMD

"Lyme disease"

You might be surprised by what they say
Avatar universal
Thank you everyone...

First to SurgiMenapause, you really know a lot about medical things, and I am so glad for your help.  I am not sure if I was tested for GFR (kidney) but I will ask my doctor.  My blood presure is always high, and the PCP brushes me off and says I have "white coat high blood pressure"  meaning I get it when I see a doctor, but if it left untreated, won't it l harm me in the long run?...and I always thought I had Lupus or SERONEGATIVE RA, but the doctors do not agree...and I REALLY appreciate the info on generalized OA, because I have OA everywhere...spine, hands, knees, feet...

To doctorme medical, my rheumatologiost told me to get a second opinion when I asked him about the symptoms he did not diagnose  (limited range of motion, knee function loss, rashes)...so I will do this and keep everyone posted.  If I have sero-negative rheumatoid arthritis, what tests would the doctor do to diagnose it?  I have a LOT of low-positive auto antibodies, and the rheumatologist brushes them off, as meaning nothing.  Is there any test that looks for auto antibodiues more generally?  Is there any type of bacterial or viral illness that is not dected in a CBC or MET test?   In February, the PCP gave me a DAP diptheria-Ac Pertussis shot.  Then a month later the Department of Public health called me up and said I was exposed to Whopping Cough in an employment office, I was in that month, and that I need antibiotics.  I told them I just was vacinated, and they said "the vacinations don't work."  So I had to get a Z-pack of antibiotics and take them for five days.  Now I wonder why the DAP shot was faulty, and if I have Lyme disease, would the antibotics help, or make it worse.  (Was the treatment long enough?  Because now I feel very ill...a lot worse.)  

To jakegorzen, I BEGGED my PCP to give me a lyme test, and she did, but it was NOT a western blot test...so now I have to try to get it done by another doctor.   I wanted to go to a specialist in LYME disease, and contacted the lyme disease asociation, and the closest doctor is in Pennsylvania.  I live in Northeast, Ohio.  Do you know of a specialist in this area?  
Top General Health Answerers
363281 tn?1518219421
Nelson, New Zealand
1756321 tn?1547098925
Queensland, Australia
19694731 tn?1482853437
AL
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.
Here are the pros and cons of the top fad diets and weight loss plans of the year.