Autonomic Disorder?

[jltcamp]

I have several questions to ask that I have not been able to obtain answers to from my doctors and specialists.

In March of 2008, I was having IV antibiotics for 3 weeks for a toe infection that would not clear - Tazobactyum - flagyll- penicilin.  THis is when I first lost all secondary pain throughout my body - could pull my hair and not feel it - could not feel it when you pressed on my legs - became euphoric and extremely giddy.  ER determined I was allergie to above drugs.

All sensations returned to normal - neck and back pain chronic and could feel sensations again.

I had a positive ANA test in Dec 2008 - negative Ds-Dna but low C4/5.  I had started Crestor 20mg approximately 3 weeks before and then the following occurred which caused my doc to do the bloodwork above::

1.  Lost all seconday pain sensations symmetrical - more in face and upper body but also in lower body but could still feel pin *****;
2. Loss of ability to sweat bilateral - entire body;
3. Pupils bilaterally more dilated but sluggish to respond;
4.  Loss of fight or flight anxiety response and all anxiety feelings - even though had been on meds for anxiety for over 10 years;
5. Lost itch sensation;
6.  Head felt muffled from sensations and emotions - like when you are on pain killers and "out of it";
7. difficulties concentrating and very forgetful;
8 DId not feel hunger anymore and did not feel full bladerr - stomach never grumbled etc
9.  All of a sudden found background noise very annoying and made it hard to hear - never had this problem in my life.

The above symptoms were not present a 100% of the time.  Initially they would come and go withing a few minutes, hours, days, Then it seems like they mostly disappeared but would re-occur occasiiionally but for short time periods only.  Also, if my neck pain did return for a brief period of time or normal aches and pains - I would just have to tip my head to the left and my jaw up to the right and I could make all of the body sensations disappear again,  I do not know if it would make anxiety go away or cause any of the other symptoms to occur again, but it definitely made the secondary pain go away.

Initially all ct scans - MRi's - carotid doplar - all came back normal in 2008 and early 2009. My WBC count was slightly below normal occasionally.  Nothing else showed except positive ANA as indicated aboe and slightly low c4? or c5?

Symtoms above remained until I started taking Naproxen for sudden onset of bilateral knee pain (extreme) in early 2010 .  Then partially started to have sensations return.  Stopped all regular meds as I found out about above blood results when I personally reviewed my file - and I found out that I  was on several meds that have ben known to cause drug-induced lupus:

1. Diltiazem,
2. Zoloft;
3. Crestor;
4. ALtase.

Within 36 hours I was aanxious, itchy  like crazy, starting to sweat, feeling hunger and bladder, had neck pain and achy back.  I had to take benadryl I was so itchy.

I then returned to taking all above meds , but stopped the Naproxen.  Within less than 12  hours I was numb again both physically and mentally and no longer sweating or able to feel hunger or bladder etc. and waas no longer itchy.

Just received results of SPECT brain scan - which was completed while I was NOT taking Naproxen - but was taking all of the above drugs.

SPECT showed the following:


1.  subtle bilateral symmetric decreased perfusion in both frontal lobes and in both anterior temporal lobes -found not to be typical of cerebral vasculitis.



After SPECT scan - I again stopped all above meds for approximately 4 days and DID NOT take Naproxen - no effect occurred.  I still had all symptoms above so I started all above meds again.


I put my neck out a week or so after the SPECT SCAN.  I stretched in the morning - loud crack in my neck and severe pain. Loss of ROM especially to the left side.  Basically iced neck and did not move it for 3-5 days.  Unable to swallow without pain in my spine at base of neck and shoulders.  Unable to eat even 1 little cooked macaroni wiithout irritaitng the c-spine.  X-ray showed nothing according to ER doctor but my eyes were constricted and non-responsive to a flashlight being shone in them. diagnosis by ER doc was a strained ligament (even though I told him I had not been able to feel secondary or muscular pain for over a year!)

Started Naproxen again 375 mg - and stopped all other meds again because I could not swallow them.  Able to swallow within approxinately 1 week.  No neck pain or limitation in ROM any more .

Since above happened, I have been off all other meds (other than my insulin - Humalog and Lantus) for approx 2 weeks but am still taking Naproxen .  I now sweat, have all pain sensations back - even in my face - which was always the numbest.  I am itchy like crazy!  I get anxious and cry (note- I have gone off only the Zoloft for up to three weeks at a time and have never had the anxiety and crying occur until the end of the three weeks and have then gone back on same).  Essentially - I am back to my normal pre Dec 2008 self.



So far I have been told I do not have MS by one specialist; told I do by a gp; told it is all related to diabetes - ie neuropathy even though it all happened at the same time - bilaterally across many systems, told I likely had a minor stroke in the hypothalamus, may have drug-induced lupus and quite frankly I do not know what to believe anymore.  I am wondering if the following is possible? likely??

Could decreased blood flow to these regions in my brain as seen on the SPECT scan  be caused by swelling caused by DILE? trauma to the neck? both?

Could decreased perfusion cause the symptoms I experienced for over a year?

I don't even know if I should stay on the Naproxen?  

Any comments or suggestions would be greatly appreciated.  Has this or something similar happened to anyone else?  What were you diagnosed with?

[jltcamp]

Thanks.  After reading your post, I stopped the Naproxen and I still have all my sensations back.  So it looks like it really was caused by the Crestor or a combo of all the other meds.

I really appreciate you taking the time to post a comment and help me out.

Keep in touch and let me know how you are doing.

Jodi

[tonyad]

   Could you ask your dr for a different type of pain med?
there are low doses of RX pain relievers that would even work better and be a bit
safer...believe it or not..Lol

     You have an awesome outlook! Good for you!
oh ya! i forgot to answer one of your questions...I am dx with
NCS (neuroCardioGenic Syncope) and I have Multiple Sclerosis.

   please keep in touch :)
take Care,
~Tonya

[jltcamp]

Thanks for responding so fast.  I have only been on the Naproxen for approximately two weeks this time and for about 1 week when I first had the termendous knee pain in February of this year - and i only take 1 or 2 250 mg tablets a day right now.  The reason I stayed on is because last time when I went off all my meds for 4 days there was no improvement.  But, when I was on Naproxen AND stopped then I had almost immediate results.

I could stop the Naproxen again - it was for the neck pain when I i njured my neck a few weeks ago and also for the severe knee pain which is now mostly better - at least I can sit down and wali up and down stairs without a lot of pain - just a bit!

TTYS

Jodi

[tonyad]

  Oh my goodness my friend. you have really been through some very CRAZY stuff over the last couple of years......you are obviously such a strong person to have endured all that you have!  

   Now, your main question is...Could you have an Autonomic Dysfunction?  
Here is what I do know in regards to DIL...

   Once the suspected medication is stopped, symptoms should decline within days. Usually symptoms disappear within one or two weeks. Drug-induced lupus can be diagnosed with certainty only by resolution of symptoms and their failure to recur after stopping the medication.

    Now let me ask you...Why are you still taking the Naproxen? This is something that should NOT be taken long term As you can have some serious problems.....

    Naproxen is in a group of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). It works by reducing hormones that cause inflammation and pain in the body.

Naproxen is used to treat pain or inflammation caused by conditions such as arthritis, ankylosing spondylitis, tendinitis, bursitis, gout, or menstrual cramps.

   Naproxen can increase your risk of life-threatening heart or circulation problems, including heart attack or stroke. This risk will increase the longer you use naproxen. Do not use this medicine just before or after having heart bypass surgery (also called coronary artery bypass graft, or CABG).

Seek emergency medical help if you have symptoms of heart or circulation problems, such as chest pain, weakness, shortness of breath, slurred speech, or problems with vision or balance.

      Does your doctor know that you are still taking the Naproxene (NSAIDS)? and WHY?  for such a Long Time?
i will wait for you to answer these questions then finish with the rest. when you post back..
TTYS,
be Well,
~Tonya