Please tell me what to do next.

[kmil1999]

Probably not the exact place to post this, but I know this community is very supportive, smart and helpful.  I am at a total loss so hear goes!

I have no idea where to go next.  I haven't been feeling well have been though a workup ruling out MS and auto-immune dx's.  Today I feel worse than I have in a long time.  I called my doctors office to get an appointment, but he is out of the office this week.  So they transferred me to the dr. on call.  That office stated there is no way to be able to fit me in this week at all.  I call my dr. office back and have to leave a message.  They have not go in touch with me yet.  (It’s been over 4 hours.)

  I do have narcolepsy and CFS.  I do not have a gallbladder, appendix, or any female organs.  

The main problem I am having now is that I think I am retaining fluid not only in extremities, but in my abdomen also.  It is getting hard to breath because the pressure in stomach due to the bloating. (Gained 3 pounds over night) I am also having pain in my right fingers, wrist, right toes (pain feels like a cramp/pull like pain hard to describe) and flank pain.  I also have numbness and tingling off and on in toes and fingers and get what feel like bee stings to my left knee routinely and occasionally elsewhere.  

  My reflexes are brisk especially in the legs.  Sensory testing include, pin reduction over dorsal left median hand distribution and reduction in pin over the sural territories of both feet laterally.  Also, I have a sensory alteration over the left cheek and left forehead.  

  The only labs that are abnormal are: two unspecific white matter changes on MRI, platelets run a little high consistently (350-575th/mm3) , morning cortisol is low at 3.6 (normal’s 8.7- 22.4 ug/dL), and catecholamine’s norepi is 626 (<420) total catecholamine 656 (<504).  Occasionally my  ANA is 1:160 mixed pattern speckled and homogenous, and my GFR goes down to 60, 53, & 24 hour urine shows high protein at 184 and 288 (<150 mg/24 hour)  but then it will go back to normal.  Since I have been feeling bad my cholesterol has also gone up to low 200's.

  Any help in pulling this info together would be appreciated.  I feel awful!  Thanks   Karen

[kmil1999]

Thanks all for the comments.  Saw a dr. (in the room <10 mins.).  Had blood work done and acute abd. series x-ray.  The dr. said he will be in touch!!  He didn't even get an UA even though I have flank pain.  I am so dis-illusioned with our health care system!  Thanks again  K

[steph74]

(Woops--meant I second Karen)

[steph74]

I second kmil.  Go to the ER NOW.  Fluid retention like that, with difficulty breathing, and fluid in the abdomen is not a good sign.  Go, GO, GO!!

Please let us know how you're doing.

[Karen99]

Often, when we have autoimmune problems that are difficult to diagnose, we tend to discount other physical problems.  What you are experiencing may or may not be related to your recent concerns.  

Whatever the case, they need to make sure your liver, kidney, and heart are functioning properly.  Maybe they were okay yesterday, maybe not today.  The only way to know for sure is to have lab tests done at the ER.  You DO NOT NEED TO WAIT for a freaking doctors appointment.   Shame on them if you told your Dr.'s office about the sudden swelling and they did not advise you to seek appropriate medical attention.  Gggrrrr!

Also, keep in mind it would be good to be evaluated if you are in some type of flair.  I pray that the ER doc is bright.  There are some very good ER doc's out there.  

[Karen99]

Hi Karen.  Without a doubt, if you are having a difficult time breathing GO TO THE ER NOW!  

Even though you have been having a difficult time and don't have a diagnosis, retaining fluids to the extent that it makes it difficult to breathe warrants a trip to the ER.  

I'll write, more but want to make sure you don't suffer with this all night...........

[kmil1999]

The sensory and reflexes are from a neurologist report.  I figured all the edema was not ms related, but have no idea where it is coming from.  I know heart function is good.  Maybe kidneys, but dont know why my kidneys's would not be working right.  
Thanks for all comments.  Thinking about ER visit, but hate to do that too.   Karen

[sllowe]

Hey Karen,

You sure are having a time of it.  I'm so sorry.  Only thing I can think to do is get an appt. w/the Dr. when they call back.  Streamline the current symptoms best you can  for them and ask for an exam. Call them back if you don't hear from them.

The fluid retention and bloating does not sound MSey to me.  Are the sensory and reflexes you mention a part of a report you received from a Dr.?   I'm sorry if you've already mentioned. My memory is the pits.

Hang in there,
-shell

[scaredguy309]

Has your doc considered lupus? Whats your esr like? Just my opinion but it sounds like flair ups of lupus.

[wadeheather]

Did you talk to a nurse?  Does your insurance company have a nurse line? Do you have an urgent care that you could visit?  I would never really recommend urgent care because I'm not very patient. If your extremeties are swelling and that's not normal for you, you should probably talk to someone.

Sorry, I'm no doctor and I don't know what your history is or what's normal for you, but the swelling makes me nervous (assuming it's not normal for you).