Rest of Round peg in square hole

[TiredPT]

February 7, 2007: return to baseline level of fatigue -- tired all the time but can actually participate in intelligent conversation.  Lymph nodes swollen under both arms, under right side of chin, behind right ear, and in right groin.  Running low grade temp (99.5 - 100.5); continued for several days then resolved

February 15, 2008: beginning of cycle of migraine headaches.  No prior history of headaches.  Start with photosensitivity and facial numbness, sometimes right side of face, neck, and head; other times whole face and head.  Had 6 migraines in the next month.  Continued to run low grade fevers, never above 100.5

March 16, 2008: woke up with swollen lymph nodes under left arm and under chin on both sides; still running low fever

March 18, 2008 - now: return of problems sleeping.  Waking up every night around 1-3am due to leg pain (pain in hips and knees, and feeling that muscles are 95% of the way into a spasm); woke up one night due to a prickling and itching sensation on my arms, legs, and torso -- regardless of feeling, bad enough that I was unable to sleep.  Found an old prescription for Flexeril.  On March 23, started taking 5mg before bedtime and have been sleeping much better.  That stuff knocks me flat!

March 20, 2008: onset sore throat, lymph nodes now more swollen

March 21, 2008: saw physician I'd not seen before.  Did rapid strep test -- negative.  Felt my lymph nodes and asked, "Have you ever had mono before?"  I wanted to choke him.  Gave me antibiotic just in case but culture on throat came back 2 days later as negative.  Lymph nodes decreased in size to normal over the next week.

March 25, 2008: visit with new neuro.  Wants to refer me to Mayo to see neuro, rheumie, and possibly infectious disease specialist.  Ordered an MRI for April 2 on a 1.5 Telsa, with and w/o contrast of brain and c-spine.  Doesn't want to do any other tests because if I go someplace else, they'll just repeat them.  Doesn't want to treat the symptoms because my body is very sensitive to medication.

March 27, 2008: onset of worsening of icy-hot burning sensation in both legs, tightness in calves and weakness and though my legs from my knees down don't want to work.  Climbing steps is exhausting so I start opting for the elevator (looks REALLY BAD when a physical therapist takes the elevator -- it is like I'm not practicing what I preach; don't want to come across as a hypocrit).  Walking is difficult, and I notice that I now require a much larger base of support (feet wide) to maintain my balance.  Continues through Sunday then gradully improves to today being easier to get around.  Still feel an icy-hot burning or cold water pouring sensation from my mid thighs down on both legs and on the backs of both arms

Any thoughts anyone? . . . . anyone? . . . . anyone? . . . . . Bueller? . . . . Bueller?

[Want to feel well!!!]

This frustration must be overwhelming for you.  

Several years ago my family was covered by a frustrating HMO (when I lived in a different state) that ran its own hospital and pilot clinics, and it seemed like they were wasting so much time, effort, and money the way they did "business."  This is a difficult situation for you.

On the bright side, you have health coverage, but on the dark side, you have the situation you are in.

I hope you get some answers.  Keep trying!!!!

Wanna

  

[TiredPT]

Thanks for the responses . . . . turns out the decision is not as big as I thought.  After much time on the phone with the insurance company, found out they won't cover either.  I have absolutely NO out of network coverage and there are no bigger hospitals in my coverage region.  There are a total of 3 rheumies, 3 infectious disease specialists, and already have my new neuro.  The lady at the HMO said that I have to exhaust all possibilities within my network before they will even consider letting me go elsewhere (regardless of where).  

So . . . . . off to call the neuro to ask if she will actually keep me as a patient, then to call G.P. to set up appointment to ask for referral to infectious disease specialist and rheumatologist.  And the cycle goes on and on . . . . . it is a good thing I work 4 days per week; I seem to spend all my days off in doctor's offices.

[Want to feel well!!!]

I’m a little confused…will your HMO cover a visit to Hopkins and not the Mayo?  Or not to either one?

The reason I ask is because if the HMO will not cover either one, but you have a doctor’s referral, it could help if you called the insurance company to try to get the visit covered.  I know someone who just did that with an insurance company.  It might be different with an HMO but it would be worth $$$$$$$thousands$$$$$$$$$ to make the call.

Wishing the best for you…

Wanna

[monotreme]

The woman I spoke to at Hopkins said that you would have to find out what kinds of doctors you need to see.  Your referring physician can call them and refer you to specific types of specialists that she has in mind.  She would have to do that with Mayo too.  You need to tell them what dept is your entry dept.

Once the physician calls Hopkins, then you can call them and talk to the concierge and they will set it up for you.

the physician referral telephone number is on their website under "appointments".  

Good Luck,
Elaine

[essdipity]

I see some problems with this scenario. First, you are very likely to need a referral to any clinic at Hopkins. And who would you be referred to? Although you have many MS symptoms, you also report nausea, fever and swollen glands, which are not part of MS. As far as I know, Hopkins doesn't have a program to take a patient and shuffle her around among specialists quickly, as I think Mayo does. I may be wrong about this, and hope I am, but I'm a local and have never heard of this.

Still, it is certainly worth exploring. Please let us know what you find out, and good luck with the next MRI.

ess

[Heather3418]

I have to agree with Elaine.  I really think overall that Hopkins has been the choice of many a patient that frequents this Forum.  That's where I would have personally gone, had I had trouble getting my "second" diagnosis of MS back, a few years ago.  I was lucky and got my "re-diagnosis" (as classic MS) at UVA.  If I had not found it there, Hopkins was my next choice.

Be well dear and please remember that we are all behind you 100%.  Always,

Big Hugs,
Heather

[monotreme]

OK, now I would say that alot of what you are describing is what Craig has been going through.  he has been in the ER a few times in the last few years with intestinal blockages and has been told he has decreased muscle tone and peristalsis.

  The big difference is that Craig does not run fevers or have swollen lymph nodes.  That would signify a separate autoimmune problem to me along with a possible MS.

  Have you had a Western Blot for Lyme??

  I called Hopkins USA for out of state patients.  They have a Concierge service for people who are out of state and they will set up and coordinate appointments.  They have information on physician charges for patients who have insurance that won't pay for the appt.

  I would have every lab test possible done with your doctor so you can take every result with you.  Then if the Hopkins docs want more tests done, have them write it down on a prescription pad and take it to your Florida doctor to order and have done in Florida.  Of course you would have to go back with the results, but I think Hopkins works that way anyway.

  Hopkins should be able, through the concierge service, to tell you how much it will cost to see the doctors.  I am sick today and my kids banned me to the study to stay away from them!!  They are getting over being sick and don't want it back!!

  So here is the number if you want it:::

[phone]

  Get the charges and then decide.  I would hate to see you taken advantage of at Mayo.  Someone has to be paying for the marble floors in their Minnesota location!!

Elaine