Gloom, despair, and agony on me…...
 

Sorry if I bring you down, I just have too many things bothering me right now and I don't know what to do. I don't know what is MS anymore, what is possibly rheumatoid arthritis, and then I have all these miserable digestive issues.

Right now I'm losing my mind over this PAIN between my right shoulder blade and my spine. It effects almost the whole upper right part of my body, and I can't get a good breath. I've basically been in bed for about 3 weeks now. I've tried massage, chiropractic, ice, moist heat, stretches; I went to the GP and got a steroid shot and some Nucynta; I've used Flector patches and Volterran gel and Tiger Balm. Nothing works for long.

And it's not just pain - I'm visibly malformed too. My mid-back is swollen on the right side and my collarbones are uneven.

I'm debating just trying to go to Mayo or to Kansas City to an MS specialist, somewhere they have several different specialists working together. I need a neurologist, rheumatologist, gastroenterologist, dermatologist, and lots of other -ists. Has anyone been to Mayo for treatment/diagnosis? If so, who did you see, and did you like them? There is a lot of MS research in the Kansas City area, which is about 4 hours away from me, but I don't know if they have the multi-disciplinary clinics.

There just aren't many good neuros in this area, not for MS. If there is a good one, they are so overbooked it's impossible to get in. I almost ended up going to the hospital yesterday just because I couldn't take it anymore, but I would have had to call an ambulance and I just couldn't face running up that kind of bill.

Thoughts?

I've been having problems with my shoulders too. I have frozen shoulder in my left shoulder, that keeps coming back after getting steroid shots into the shoulder joint.

Then I fell down a few weeks ago, and since then I've been having problems with my right elbow. I think I might have dislocated it, or severely sprained it. I go to see my shoulder doctor tomorrow. Going to have him look at my right elbow while I'm there. My aunt thinks that I'll be getting an x-ray if I can get him to look at it.

Sorry that so much is piling up on you right now. It's even tougher, not knowing which disease has you in its target at any given time.

Have you considered a chiropractor for immediate relief? They are not an -ist, but IMO might as well be. When I leave my chiro's office, I feel like I don't have MS. It lasts until I do something energetic that counter-acts his work, but geeze it feels good til then. And I believe my chiro is keeping the base problem (twisted spine from lifting a weak right leg) from getting worse.

* I only mention chiropractic help because you describe pain in an area that might possibly be helped by a chiropractor. (shoulder blade to spine)

I hope you get some sweet relief, from anywhere, soon!

ETA: Respectable chiropractors will xray before treatment. A chiro who will blindly manipulate your spine is a crock, IMO!

Oh yeah, and I forgot to add to your thread title...
"Deep dark depression, excessive misery. If it weren't for bad luck, there'd be no luck at all. Doom, despair, and agony on me!" From the old show HeeHaw, I think.

I went to a chiro back in the early 2000s after a car accident. I didn't care for the chiro because he always wanted to adjust my neck by cracking it. I really did not like that.

I am considering massage, or maybe acupuncture tho. Thinking about massage just for the pain relief. Hoping that would relieve some of the pain in the muscles.

"Deep dark depression, excessive misery. If it weren't for bad luck, there'd be no luck at all. Doom, despair, and agony on me!" From the old show HeeHaw, I think.[/QUOTE]


Sparky ... you are correct - That quote is from Hee Haw!

Loved that show. Especially loved Minnie Pearl, God rest her soul.

They don't make shows like that anymore that make you laugh :)

I've been to my chiro, he did what he could but my muscles are spasming so bad he couldn't get everything to move that needed to. I trust my chiro way more than most MDs. It ****** me off no end when you go to the doctor and it's basically like -"Well, let's put on a little plaster and some fresh paint, prop up that swagging porch a bit, you'll be good as new!" I swear sometimes I know more about the minimum standard of care than half the young doctors out there!

You're not on any muscle relaxants? No baclofen or zanaflex?

maybe you're in a major flare and could use steroid therapy. It stinks that you don't have easy access to a neuro-that could give you a yes or no as to whether or not it's all from MS.

Hope you can get some treatment:hug:

I take baclofen. Mostly just at night tho. If I take it during the day, I sleep. I want to be awake during the day. Sometimes I take some valium, but that's when the spasticity is really bad and is making me have a bit of anxiety.

Msarkie - :hug::hug: That sounds very painful!!! Did they do any diagnostic imaging tests on the area to see what may be causing the swelling? Have they ruled out gallbladder disease as well?

I do hope you find something that relieves the pain and soon. Three weeks in bed due to pain is just too much and actually may be contributing to some of the pain. Let us know how you are doing.:hug:

I always felt bad for my aunt that had RA. I don't see how she did it with the pain from the RA, and it caused her to have microfractures in some places. I felt like a wimp for complaining about my stuff when my aunt would tell me what had been going on with her. (I hadn't talked to her that often in the year leading up to her dying of a heart attack. Kind of wish that I'd talked to her more).

Thinking about all the stuff she went thru now, and I still feel like I'm being a wimp with the MS stuff.

Msarkie, have you had any heart testing. Angina can be any pain above the waist and it is pretty difficult to diagnose in women because often they don't have the typical angina type pain.

Your avatar name reminds me of malarky because that's what MS can be at times, a bunch of malarky

maybe you need a referral to an orthoped"ist". no pun intended.
it sounds like you have very ligitimate problems that should be considered and evaluated seriously.

i hope you find a specialist willing to help you.
i have an orthopedic dr who is very good.

please let us know how you are.

MsMarkie I was just yelling at a dr the other day when he asked me "is it from your MS or something else?" I said "isn't it your job to find that out?" So sorry you are in so much pain. I hope that you find relief and a good dr. Both are elusive for us I know. And the isolation that comes with a flare up or call-it-what-you-may only serves to isolate, depress and magnify the issue. So its great that you reach out and connect. here, email, telephone... take good care of yourself.
janet

Thanks for all the responses! It's been slightly better the last couple of days, but I'm having to take pain pills (Nucynta) pretty regular. I really am seriously thinking about calling up Mayo Clinic. They don't require physician referrals.

Other than the back/shoulder pain, another thing that is driving me nuts is that I have a chronic staph infection on my face. Just when I get it cleared up in one spot, it pops up again a few inches away. I've been to the dermatologist and have prescription medicine, but it still won't clear up.

You can name any body system - digestive, nervous, etc., - and I guarantee I have something wrong with it. I just feel like seeing different drs and specialists piecemeal like I have been is getting me anywhere.

Oops, getting me nowhere, I mean.

it sounds like your pcp is letting you down.
maybe mayo is a good idea. since you have a lot going on you need a dr to listen, validate and evaluate for you. a good primary dr should coordinate your care even if you need to see a lot of specialists.

i hope you get some relief.

:circlelove: ((((((msarkie)))))) :circlelove:

My new thing today is my joints are itching! The insides of my elbows, and my finger joints, and my knees.

WTH?!

And of course, every day my DH comes home from work and wants to have sex. What are you gonna do?

Everybody has an itch..:D:p:D

Sally, you are too freaking funny!

I have been to Mayo Scottsdale 3 times, but in my case I already had a dx of Polycythemia Vera (in addition to the neurological dxs), and I was unable to take any of the chemos which go with Polycythemia Vera. I ended up take radiation p32 twice.
Mayo will give you all the tests from the various departments that they deem relevant. I didn't really want to see the neuro, as neuros have not helped with MS (except for the person who told me many years ago to take magnesium instead of Baclofen and Zanaflex, who helped a WHOLE lot--he was a neuro at Scripps in San Diego, retired now). The neuro I did see at Mayo I liked very much and I think he would be a very competent neuro for a new neurological patient...he agreed with me that I was doing my best managing my symptoms and he could do no more. But he was very intelligent. Unfortunately I do not remember his name.

If I were completely baffled by my condition I might consider going to Scripps in San Diego or the Cleveland Clinic, depending on where I lived and how easy it was to get there. Mayo Clinic is near Phoenix and will be VERY hot this summer--not worth doing until fall. San Diego might have an earthquake. I don't know about geophysical threats to Cleveland...New Madrid fault? Mayo Rochester might be the best bet.

But the best neurology I ever had was at Scripps San Diego, and that's about all I have to say....except that I had a BAD neuro there, too, in addition to the very good one. I think we take our chances what ever we try, and I would pray for guidance to do the right thing and that the good doctor will emerge whatever you try.


Mariel

Thanks, Mariel! Geophysical threats…….LOL! I live within the general havoc zone of the New Madrid, but the only quakes I have felt are from Oklahoma. They had one over a 4.0 late one night when it was very quiet and I was sitting in bed reading. At first I thought it was distant thunder, or a jet, but then my knick-knacks started rattling and the bed started vibrating, and it lasted quite a while. It really freaked me out, because I wasn't aware at the time that Oklahoma was even having earthquakes.

But you're right, I do take things like that into consideration! It looks like I will be trying to get into Mayo at Rochester. I've been told that if you can get a referral from a specialist you can get in quicker than if you self-refer, so I've got to find a dr who will get me fixed up. My FIL also told me my DH or MIL would need to go with me, but I really don't want to take anyone. I would much prefer to go alone. Is it feasible to get around by yourself?

Might be a good idea to have someone with you, unless you trust yourself to remember all the questions and answers.

Hope you get some relief!

Well, my MIL drives me nuts - she treats me like I'm 8 years old! It's not just because I have MS, although that made it worse, she does it to everyone. The older she gets, the worse it is!

My DH is just socially awkward. The last few times I've had surgery I made him stay home, because I can talk to the nurses and doctors much more easily without him. He has some kind of social anxiety disorder, or something, and when he gets nervous his behavior can be unpredictable.

My own mom is almost 85, and has had a couple of strokes. My FIL would actually be the easiest to get along with, but then we would have to have two hotel rooms. This is half my problem right now - I don't have ANYONE I can call on to help me out. My house is a complete pigsty. I mean not just messy - dirty! It smells bad.

Don't you just love MS? Years ago when my dad had a stroke, he was working on his speech and he would go around singing, "The Old Gray Mare She Ain't What She Used to Be." It usually came out as "the ol dray mare." Just about ran my mom nuts. But now I feel like that could be my theme song!

I've been to the Mayo Clinic Rochester. It's worth going -- you end up seeing many different kinds of doctors and they all collaborate with each other. I had a rheumatologist recommend me -- and the waiting period was 3 months for an appointment! So if you're going to do it, I would get on it right away because you might have to wait. I don't know if you have insurance, Medicaid or whatever but they were very efficient with all of the payment/filing issues. Good luck!

Thanks Natalie! It would just be really nice to be able to BREATHE! I do have major medical through my DH's employer and Medicare Disability. Any tips for making the most of my visit?

I think you might get in faster if you have a doctor refer you (but this was 7 years ago when I went). I would call the main number and simply ask what the quickest way to get an appointment would be.

If I remember correctly, I saw the neurologist first -- then was pushed on to see an infectious disease doctor, a sleep doctor, and some others. I had loads of testing done (including wearing a contraption that monitored my breathing and heart rate overnight). Once you enter the system it's easy. The key is to get an appointment to begin with.

Not sure what else I can tell you. Just go with a log of all of your symptoms and a list of questions a mile long! Bring a copy of ALL your medical records since this began. Mine was a folder thick (I put it all in a 3 ring binder) in chronological order from the beginning of my problems. I could then hand it over to the doctor(s) to examine.

I'm glad you have insurance. It shouldn't be a problem to have it covered. My insurance treated it as if I was seeing doctors and having tests in my own city (as if they were all local doctors). So there really is no excuse not to go!. All you have to do is get there and pay for a hotel to stay in. There were many reasonably priced hotels.

Too much energy?
 

I'll tell what I'd do with him and his energy. If he is living in your parents' home and he is mostly abled-bodied, he should pitch in and clean part of the house regularly.

I'm a quad and I can't move ANY part of my body but my head and right hand. Even from my chair though, I can sort laundry, load the dishwasher, push a Swiffer around to sweep, empty small trash cans, dust/wipe/wash accessible surfaces like tables, counters and sinks - even toilets. I can shake small area rugs, dust lampshades, water indoor plants or water the yard. None of it is easy, and even those things will probably be gone within a year. Progression sucks.

But he (and you) should do what you physically can to help. If you were able, you two could hire a cleaning lady or firm for 1 day to clean the house thoroughly so it would be easier to keep up afterwards. Individuals would be cheaper than firms like Molly Maids.

Good luck.

MsBluIs