Anyone else tired of the rigamarole?

[lusciousleaves]

I'm so sick of being shooed off from one specialist to another for all of their ridiculous testing. Patient hot potato. And every one of them comes up with some wee evidence of a rather benign condition that could explain their portion of it that justifies more visits and tests. Yet it never all adds up to the sum of it's parts, or explains the whole neurological picture.

After this last specialist visit, I'm skipping it all. They have nothing. Zero. They've come up with absolutely nothing. Now, at last, we might have a brain MRI that shows something. What it is yet, I don't know. I'm still waiting to hear. After 3 years of nothing, nothing, nothing.

"Oh, you have a very, very small bit of cystitis. That must be causing all of the urinary issues." "Oh. You have a tiny smidge of gastritis. That must be causing the abdominal spasms." "Oh. You have headaches. Migraines explains all of it." "Oh. This blood test was a little off. Let's set you up with hematologist next." Then there was the infectious disease specialist because of the unexplained fevers, then the rheumatologists. And now the pulmonologist, and the GI doc again, and, and, and . . .

C'mon already. Please. Enough of the merry-go-round. I so hope this MRI gives the answers this time, because I'm done with all the rest of them. I'm tempted to not see another anything until my body parts are gangrenous and falling off!

[JerryD]

So you are not happy with your medical nonsense from the pros. Here's a thought. Consider all of the things that you can do to get your physical condition in optimal shape. I mean if you eat meat, maybe cut back on that and eat more veggies. If you eat bread and cereal, maybe go gluten free. If you eat or drink dairy, maybe go dairy free. Have you had your vitamin D and B-12 levels tested? You have to be your own advocate. I wish you the best. Good luck

[Tiber2011]

I found this same rigamarole in Illinois, too.

[seapreme]

Rigamarole

So you are not happy with your medical nonsense from the pros. Here's a thought. Consider all of the things that you can do to get your physical condition in optimal shape. I mean if you eat meat, maybe cut back on that and eat more veggies. If you eat bread and cereal, maybe go gluten free. If you eat or drink dairy, maybe go dairy free. Have you had your vitamin D and B-12 levels tested? You have to be your own advocate. I wish you the best. Good luck

I totally agree with Jerry..YOU have to do a lot of your own investigating. I found out my Vit D and B-12 levels were extremely low..after a few months of taking the B-12 injections and Vit D pills, I feel much better. I also see a acupunture fellow and it's done wonders for me...don't let MS get you down. I have changed my eating habits also,,only red meat once a month,,otherwise it's turkey, chicken and many meatless meals. Have you also tried drinking alkaline water? It's helped me since I started drinking it about a year ago...Blessings to you...

[KatW]

I also had the rigamarole for many years. I had more problems in TX than IL. I found that once the specialists found nothing that they failed to follow up. I did get symptom control from my PCP but no MS diagnosis for years.
I agree with you. I'm quite angry.

I do hope that they decide on something with your MRI. I think it is very, very frustrating for our money and time to go into medical care and insurance and to not get answers. Good luck and keep us updated with what you find out.

[minnie76]

Hang in there! I went through something similar. I vowed not to call anymore docs until it was something really bad.
After two months of facial pain I finally went in to the ER and was diagnosed with TN.

No changes to my MRI (still have >20 lesions)...and back I go on to this roller coaster ride of what the heck is wrong with my body.

I feel your frustration! After not being able to feel my bladder for 4 days I thought for sure that my spine MRI would show something...but no...

Thank heavens for this site!

Take care!

Minnie76

[Lori Lee]

I agree Hang in there! I have been managing and minding my own business until my latest flare has me down.

I have researched and researched until I was cross-eyed. So I took a long break from it all. Frustrated once again and hoping I will eventually find answers. I truly hope we will all find answers but for some of us it takes longer than others. I could throw a tantrum but somehow I don't think that would be helpful. Therapeutic?! Maybe ((Hugs))

[ms382012]

ah, the runaround

Let's see
age 14: what did you do to cause your tendon injury (nothing)....
age 16: oh, lots of athletes have hand swelling while exercising
age 18: ah, you just coughed up a huge blood clot. Probably sinus drainage
age 19: no longer able to climb stairs without resting. Pain-wrists, knees, ankles
Age 21: cannot sit through a movie without heat wraps on knees. legs "locking up." red splotches over hot joints...eating hurts. turning on fan and loud music so my mom won't hear me bawling. OMG it hurts
Age 23: finally diagnosed with bleeding ulcer and rheumatoid arthritis
Age 25: shoulders and neck are constantly on fire. Cannot write an entire sentence on the whiteboard while teaching.
Age 32: RA appears to be in remission. new dx is fibromyalgia. shoulders and neck are still a wreck
Age 34: pain clinic does MRI. I have cervical stenosis. Finally, this is why my neck hurts??
Age 35: My thigh muscles are suddenly in severe spasm. Cannot walk up stairs or down stairs. Lasts a few days.
Age 36: Hysterectomy. No more abdominal pain. However, now my SI joints are found to be inflamed. My hips are also a mess.
Age 38: My neck and shoulders are still a wreck...Had a week long neck "flare up" and finally see neurologist. My neck "aches" were actually basilar migraines. Also had first episode of trigeminal neuralgia on left side.

After every check up, neuro asks if I've ever had a stroke. Finally recommends MRI for possible MS. I'd thought my cervical stenosis explained mild numbness and tingling on entire left side (even tongue and lips, weird). I was wrong. Also having vertigo (thought it was bpv but it lasts weeks to months).

At age 39, still no definitive diagnosis. Two large lesions, several small ones. Small ones could have been from chronic migraine.

And today, both arms tingling and leg muscles staring to cramp. I really don't want to have to come out of limbo. I'd rather stay here in purgatory.

[MSMOBILITYMAN]

WHAT CAN WE DO ABOUT THIS OR THAT?

HERE WE ARE IN OUR MSWORLD BLOG

Many of us have been diagnosed as having many serious diseases. Below is the long list of dreaded ailments or diseases that I have been told that I have or had…which do include:

Congenital Lymphedema w/Varicose Veins
Blood Clots in right leg
Arthritis-degenerative disk osteo-arthritis in spine
Congestive Heart Failure
Stroke
High Blood Pressure & High Cholesterol
Emphysema-COPD -Asthma
Type 2 Diabetes
Diabetic Neuropathy-nerve pain
Periodontal Gum Disease
(MS)Multiple Sclerosis
Carpal Tunnel Syndrome
Colon Cancer
Depression
Transverse Myelitis
Erectile Dysfunction
Balance Disorder

Now I wonder which of the above known or diagnosed or mis-diagnosed serious disease’s is the one that will finally be the one that will do me in?
Or in other words…will it be a combination of diseases or just one deadly killer disease or thing that will finally cause my death or demise?

Is the cancer going to re-occur somewhere else… or the depression or might it just be the Diabetes (the silent killer?) Since I never can test myself for sugar—having almost paralyzed fingers and hands…or maybe a blood clot that finds it’s way up into my brain?

Yes—eventually something someday will happen or go amiss for every one …when your heart stops it over
I may simply keep on living in spite of what MD’s have done or said or cut-or prescribed over the last 6 decades.
---and HEY… I just may out live everyone is this only jive? Who or what is keeping me this old diseased man alive?
If you guessed –GOD—the Universal Subconscious mind you are correct …and the only power to heal comes from within us all.

GOD Bless & do try to be happy and pray to get healthier...
remember the old tunes "ENJOY YOURSELF ITS LATER THAN YOU THINK"
And Wet Willie's song..."Just keep on smilin"
through the pain...even if you feel like ur goin insane

[lusciousleaves]

Thanks for the support, everyone. Sometimes it helps just to gripe and get it out. Here's an example of the rigamarole:

I've got this awful squeezing pain in the upper abdomen I'd swear is a diaphragm spasm. Since the c-spine MRI came back normal, they've got to look at everything else. I've been through having my entire GI system scoped once, a chest CT, pulmonary function tests, chest x-rays and a c-spine and t-spine MRI to try and pin this down. It's sent me to the ER 2x, and now experiencing shortness of breath.

The GI doc, after finding minimal changes on the first round, decided I needed another gastroscopy this summer to check for ulcers again. They gave me propofol for anesthesia, then had a hard time waking me up afterward. Once finally awake, the diaphragm spasm kicked in. It's the first any medical professional has seen the full-blown thing.

They were watching me for shock, thinking the doc had punctured something. My complexion went pure white, blood pressure dropped, breathing rate increased, and my whole body started shaking. They asked if that's the pain I was having at home. Well, yes, as a matter of fact, this is exactly the pain I've been telling you about.

They didn't know what to do with me. They were asking me what I did at home to get it under control. Since this was an out-patient facility, they didn't have what I needed to take care of it and ended up loading me up with morphine. On the way out, my bladder would barely empty. Disgusted with the way things went, rather than say anything about it, I let them send me home with another teeny dose to get me through the ride. By the time we pulled in the driveway, the spasms were back, and my husband had to practically carry me in the house. I took a double dose of baclofen and finally had a chance to lie down with some hot packs and an ice water and get this under control.

It was more than a month before my bladder started working normally again. Consequently, I ended up with a bladder infection that started another flareup with double vision and tremors that make people think I'm detoxing or crazy or something. And all of this from them wanting to scope me to look for an ulcer. They found evidence of one that had healed (which I believe was there the last scope as well), prescribed this PPI, that I've told him I can't take because they give me the worst reflux I've ever had.

And we paid $100 for this, plus the $30 copay for the office visits, plus the $30 for the medication copay that I had to discontinue, plus the $30 for the medication copay for the resulting UTI.

Nevermind what we've invested in this whole search of the pulmonary system, the urinary system, now the rheumatologists, plus all the copays for the many migraine meds I can't tolerate and that don't make any difference in this. Every trip to the MS doc in the big city cost at least $100 between the gas, the parking and the copays, then came the many migraine meds that just sit on the shelf because I can't take them.

I almost didn't get this MRI because nearly every test has come back normal so far. Then lo' and behold, the one test I almost said, "Nah. I'll pass," came back abnormal.

[lusciousleaves]

Oh yes, and the double vision, that was measurable, too. Finally, something the eye doc can measure to add to the picture. I sure hope we can get on the right track after this.

I just seems there should be a better way to go about these things. How inefficient and expensive the whole thing has been.

[palmtree]

Thank God my docs have stopped all of the testing. This is all about money. More visits, more bloodwork, more urinalysis. I had a doctor who was very blunt. You do these tests or I won't prescribe Celebrex (which has been a wonder drug for me because I has arthritis in my kneecaps). Right now, I'm trying to get my PCP to give me Celebrex so I won't have to go to this jerk who says I have osteoporosis (it's so mild that it doesn't need treatment).

My gripe is that I have so many "have to" appointments every month that I don't have the energy for anything else. I have Tysabri once a month. Xolair for asthma once a month. Pain doctor once a month (he makes $280.00) for every visit. Then there is the eye doctor, the dentist$$$$$, the OBGYN, PCP and the therapist. Have I forgotten anything? Oh yeah, i have to have an angioplasty of my brain to make sure the stent is still in place. Car service and the hairdresser are starting to move to once a year.

Most of my appointments do have a purpose but I'm still tired of the rigmarole.

[lusciousleaves]

Wouldn't it be nice if you could communicate by email instead? I can understand if a person needs a physical exam, but a lot of what happens can be done over the phone or by email.

For the UTIs, I've got my own test strips to save me a trip to the docs office just to test the urine. At first, they were taken back by a patient testing their own urine. Since they found out I don't have the typical pain with them that I used to, cloudiness is my only indicator anymore, and that's not always an accurate guide. There are so many other reasons I have to see the docs, I've got to do something to cut down on the necessary trips. Every office visit is half a day lost because of the distance and subsequent wait at the pharmacy, or extra trip to town to get to a pharmacy.

There comes a point in time where a person has got to ask themselves if the investment is paying off. There has to be a better way. We're in serious need of innovation in the business end of the medical system. Coordinated care centers and advanced diagnostic facilities with expert teams for complex cases would be a plus. But that would be too efficient and make too much sense, so it's likely to not happen here. Ha.

[lusciousleaves]

So I got to thinking today on how to turn these lemons into lemonade. It was then that I realized I've had much of this workup done in advance this summer - the chest CT, the rheumatology work, the eye exam, and now this MRI.

I've got to walk all of this stuff in tomorrow and ask if it would be harmful to put off the IV steroids until all of the testing is completed. I'd like to have the spinal before I take anymore steroids.

In either case, it looks like we're definitely getting closer to getting to the bottom of this.

[need2talk]

My list is nearly as long as msmobilityman's! I believe we are all in the same boat, yet, the Dr's keep getting paid!! And we keep getting worse