confused and frustrated! Any THoughts?

New members should feel free to introduce themselves here

confused and frustrated! Any THoughts?

Postby lmperez » Sat Jun 13, 2015 10:31 am

Hello
I am new to this board but have been following for a while. I am in that horrible undiagnosed state and trying to decipher which if any of the auto immune disorders I may have.

Many years ago after my daughter was born I was diagnosed with Graves disease. After several attempts to manage it with thyroid PTU and such it was recommended to have it killed by means of radioactive iodine. I had to repeat this process two times before it worked. Now I am on synthyroid and my thyroid is on the small side.

My thyroid was managed until Oct of 2014. That is where my story begins. I underwent surgery for a lumpectomy and was supposed to be off for 1 week. AS far as the surgery site I felt fine , but I was weak and shaky in the hips, I was having headaches and extremely tired. AS time went on I started having join pain in my hands, feet, neck and back. AS time passes. the pain has progressed, the fatigue is really bad (up at 5:15, work at 7:00-3:30, nap 4:30-6:30 bed by 9:00) and now I get off and on pain in shoulders, knees, elbows. I have word finding difficulties, I get confused and I have difficulty reading. I also have a tendency to trip.

The newest symptoms are tingling in my left foot... 3 toes and into the ball of my foot, I have had a vibration on my hip( I thought it was my cell phone), feeling wet on my thigh when in fact there was nothing, my face feels tingly, my lower back gets sharp shooting pains kind of like it goes down my sciatica, there is a really sensitive spot on my back that hurts when touched, my ankles and hands swell all the time and I occasionally still get headaches.

I am currently on Cymbalta, 5 mg of time released preg and something for the pain. I am seeing a rheumy and a neuro both are stumped. I present with many unspecified symptoms bot all my tests are good. My CRP and SED rates are elevated and I have a positive ANA. I did have an MRI which showed 8 lesions which neuro says it is in the areas of MS, but she says I don't present like a MS patient.

I am so confused and frustrated. These are everything they have thrown at me but nothing says YES THIS IS IT... HVPB19, lupus, rheumatoid arthritis and MS.

Thanks for letting me vent
lmperez
Newbie
 
Posts: 5
Joined: Tue Jun 02, 2015 8:53 pm

Advertisement

Re: confused and frustrated! Any THoughts?

Postby lyndacarol » Sat Jun 13, 2015 5:43 pm

lmperez wrote:Hello
I am new to this board but have been following for a while. I am in that horrible undiagnosed state and trying to decipher which if any of the auto immune disorders I may have.

Many years ago after my daughter was born I was diagnosed with Graves disease. After several attempts to manage it with thyroid PTU and such it was recommended to have it killed by means of radioactive iodine. I had to repeat this process two times before it worked. Now I am on synthyroid and my thyroid is on the small side.

My thyroid was managed until Oct of 2014. That is where my story begins. I underwent surgery for a lumpectomy and was supposed to be off for 1 week. AS far as the surgery site I felt fine , but I was weak and shaky in the hips, I was having headaches and extremely tired. AS time went on I started having join pain in my hands, feet, neck and back. AS time passes. the pain has progressed, the fatigue is really bad (up at 5:15, work at 7:00-3:30, nap 4:30-6:30 bed by 9:00) and now I get off and on pain in shoulders, knees, elbows. I have word finding difficulties, I get confused and I have difficulty reading. I also have a tendency to trip.

The newest symptoms are tingling in my left foot... 3 toes and into the ball of my foot, I have had a vibration on my hip( I thought it was my cell phone), feeling wet on my thigh when in fact there was nothing, my face feels tingly, my lower back gets sharp shooting pains kind of like it goes down my sciatica, there is a really sensitive spot on my back that hurts when touched, my ankles and hands swell all the time and I occasionally still get headaches.

I am currently on Cymbalta, 5 mg of time released preg and something for the pain. I am seeing a rheumy and a neuro both are stumped. I present with many unspecified symptoms bot all my tests are good. My CRP and SED rates are elevated and I have a positive ANA. I did have an MRI which showed 8 lesions which neuro says it is in the areas of MS, but she says I don't present like a MS patient.

I am so confused and frustrated. These are everything they have thrown at me but nothing says YES THIS IS IT... HVPB19, lupus, rheumatoid arthritis and MS.

Thanks for letting me vent
Hello and welcome to ThisIsMS, lmperez. We understand that sooner or later all of us need to vent.

Your description of "pain in my hands, feet" and "tingling in my left foot" is the definition of "peripheral neuropathy." This is a common symptom in many conditions. I assume your rheumatologist and neurologist are investigating the cause of this peripheral neuropathy as the University of Chicago suggests in the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 4:00 pm

Re: confused and frustrated! Any THoughts?

Postby lmperez » Mon Jun 15, 2015 4:47 pm

Thank you for your reply. And yes I have been tested for all the above mentioned tests. All came back fine. Both the rheumy and neuro continue to do tests but no luck as of yet.
lmperez
Newbie
 
Posts: 5
Joined: Tue Jun 02, 2015 8:53 pm

Re: confused and frustrated! Any THoughts?

Postby lyndacarol » Mon Jun 15, 2015 5:04 pm

lmperez wrote:I underwent surgery for a lumpectomy and was supposed to be off for 1 week. AS far as the surgery site I felt fine , but I was weak and shaky in the hips, I was having headaches and extremely tired.
I am curious… Do you know if nitrous oxide ("laughing gas") was part of the anesthesia in your surgery?
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 4:00 pm

Re: confused and frustrated! Any THoughts?

Postby lmperez » Tue Jun 16, 2015 8:44 pm

I don't know. Why?
lmperez
Newbie
 
Posts: 5
Joined: Tue Jun 02, 2015 8:53 pm

Re: confused and frustrated! Any THoughts?

Postby NHE » Tue Jun 16, 2015 11:22 pm

lmperez wrote:I don't know. Why?

Nitrous oxide inactivates vitamin B12. If nitrous oxide was used, then it can take some time to recover from this effect. Your symptoms are consistent with B12 deficiency, but even if nitrous wasn't used, they could be related to a bad reaction to the anesthetic. It might be worthwhile to ask your doctor which anesthetic was used. Blood tests to check your B12 levels might also be a good idea in order to rule out deficiency as a possibility. If your received nitrous, then it's possible that your B12 levels may have been in the low normal range prior to surgery and then the nitrous inactivated the B12 making you deficient.
User avatar
NHE
Volunteer Moderator
 
Posts: 4748
Joined: Sat Nov 20, 2004 4:00 pm


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service