No wonder you are so frustrated! You are what my daughter, Chelsea, would call "a poor little thing!" I think you said earlier that you are between rheumatologists right now, but do you have an internist or a GP running the show for you? With so much stuff going on, that's the first thing that came to mind.

I know it's easier said than done, but you really need one guy (or gal!) making sure that all these different specialists you keep getting referred to for one thing or another are talking to each other - at least where it counts! - and keeping you and your GP informed.

Your goal of wanting to develop a tx plan you can mostly do @ home is one I can really relate to. It gets so tiring running from place to place, esp when your "knower" knows the answers lie within, right? Even if it's just maintenance stuff at first, like deep breathing, stretching, relaxation and creative visualization techniques (whatever works for you), there is a lot you can do to bring some peace into your life, while cutting down on the sheer number of Dr./PT app'ts you have to keep. Maybe even get a massage person who makes home visits on your team, since you did well with that before.

Oh, and as usual Jo has read my mind as far as any surgery eval goes. If you want, you could use the 'search' function on the TOS forum - type in "FL" or "Florida" and see what threads/posts pop up for you. May be a good way to find TOS health care providers close to where you are (also check the "Drs. and PTs" sticky thread at the top of the forum; they're listed by state there, however I'm not sure how current that info is).

But let's see if we can't keep you off the operating table, DixieDarlin. Try some other tried and true ways of dealing with some of the peskier sx you are experiencing. You deserve to have lots more pain-free days in your life! And by the way, 50 is nowhere near old, my friend (if it is, then I am ancient!)…

Dixie,

I am sorry to hear that your are going through so many health problems.
It is sad that when we get older, more health issues seem to creep up on us.

I too have had some of the health concerns on your list.
I am a 54 yr old female that about two years ago had enough. Had enough with drs and started looking into what can I do for me.

Found that with researching and talking with a very good friend of mine that she suggested a Upper Cervical Chiropractor that can also adjust the rest of my body.

Our spine is a miraculous thing. But everyday life can put stresses on it.
The spine is connected to many parts that help our body do what it does.
Muscles, ligaments, nerves all serve a purpose and in turn our nerves supply many of our organs too.

When your spine is out of alignment it can cause all kinds of problems.
Think of it as a hose, when you step on a hose it cuts off the water supply.

Your spine is the same way. One misalignment and it can trickle down to even a simple pinch nerve.

I am no dr and don't claim to be, but with my past experience with the medical field, all they want to do is give you a pill or do surgery.

I have found that after talking with a chiropractor about my medical issues, I found that after one adjustment, I felt results. Not big results but one little one. Then when I went back two weeks later, I found that with another adjustment, I felt even better. I took less meds. They gave me a exercise regime that worked for me. I changed my bad ways of soda to water, cut out alot of sugars especially sucralose, and found that in one month, I was feeling like my old self again.

I have been going to the chiropractor for two years now and I have never been better. Yes, I do have some health issues that they can't cure.

I have arthritis in my neck and lumbar spine, have had carpal tunnel, thyroidism, they even thought I had a heart attack. NOT

PLEASE, PLEASE, PLEASE ... look into seeing a chiropractor. Talk with them, read up on the practice here online. Talk with others who have gone to them. Check them out ... You will find that they can help you MORE than any MD can.

My chiropractor saved me. I no longer take narcotics, maybe an occasional aleve. They saved my life .. let them save you!

God Bless you and you are in my prayers!

Hey there. Yes, I'm in between rheumatologists and do wonder if a lot of my issues is from the RA. I've been off the Methotrexate for about 5 months now. I'm hoping this Rhuemy will accept me. Some have turned me down due to my complicated case. The pain management doctor is an internist (internship in internal medicine, resident training in physical medicine and rehabilitation) and I do have a GP. She's new to me as well so I'm not sure if she's running the show? lol I hope she is.

Yes, it's confusing as I'm not sure all the other doctors are coordinating with each other. They all do have my records since it's online system for them. I do wish I didn't have so many doctor's appointments it's like a full time job, however, I'm getting use to it. I also care take my Mother because she has Parkinson's and emphysema. So I have to take her to her appointments as well.

Thanks for the info on the search function. I will certainly try and see if there is a doctor here (small town) for that. You never did say, should I get a neuro doctor? What I've decided to do and hopefully not tick off my pain management doctor, is go ahead and have a evaluation with the surgeon. See what he says. Then go back to the pain management doctor and tell him until all my tests are done (I need xrays of the throaic spine) and a complete overall view can be seen, that I will not consider surgery.

I apologizee about being old at 50...it's just I feel very old. I watch people that are about my age and they seem to be having a good time and here I am broken down and can hardly move. :P Thank you again for all your help.

Thank you. I don't mean to come here and whine, that's wasn't my intentions at all. I just want to find out what is really going on with me. As you've said, it appears every time I go to the doctors there are more problems or more medicines. I have gone into my GP's office and gave them my list of medicines and asked which ones if I didn't take would kill me. Then they proceed to tell me why I need the medications. Gawd!

The pain management doctor does alignments on me and he does the trigger point injections. I've been going to him for two years now and yet, still keep getting more and more things going downhill. I do appreciate your response and advice. I have been wanting to go back to the chiropractor to get those myofascial release thingys...OMG heaven! That was the only thing I enjoyed at the chiropractor.

Years back I had an evaluation with a Neuro-surgeon and at that time he told me that due to the spinal degeneration and disc disease that eventually I would have to have a ACDF which was said to be a cervical spine surgery. I've been trying avoid that. I took it with a grain of salt since back in 1999 another doctor that did knee surgery told me I'd be in a wheelchair in five years give or take. I refused and by the grace of God, I've not gotten there yet. Canes and walkers, yes, but no wheelchair hopefully. Plus my dog is too little to do my chores for me so I have to stay mobile!!!!

Thank you again and may God bless you dearly.

In the interest of thoroughness, get dynamic studies done of your neck (if not already done). That would be either flexion/extension xrays or dynamic fluoroscopy to rule out instability, as suggested by curve reversal, I think you said C5-6.

Thanks Dubious! Very helpful in I know what to ask for. I have never had that done that I know of. I know I haven't been injected with anything to get xrays. I always wondered about that. Thank you again.

Edited: Nope, never had the flexion/extension xrays. Always just standing straight up or in the MRI. Certainly will ask about that. Thanks.

Whoops! My bad, I hadn't realized you were waiting to hear back from me - I think adding a neurologist to your tx team is a great idea. Just make sure that they treat patients with TOS, to be on the safe side. If you find one TOS specialist reasonably close to you by using the forum search function, but they don't happen to be a neurologist, you can try calling them anyway to ask for a referral to one. These guys all tend to know each other. You know how that goes, I'm sure!

Also a little Confucious () as to why your pain doc would be ticked off if you went for a surgical consult. I thought she was the one pushing for you to do that, and that you were a bit taken aback at the prospect. Perhaps I got it backwards (wouldn't be the 1st time!).

Tenny rate, your new neuro will be the best one to refer you to the surgeon who is the top TOS specialist in your area. These guys tend to be vascular surgeons, but don't be thrown off by the nomenclature. And again, it would just be a consult - you wouldn't have to commit to having any surgery. They might want to order some diagnostic tests and/or conduct some noninvasive clinical tests during the office exam. Pretty standard stuff.

Must close now as I've gotta date with my pillow! Goodnight and bless you for taking care of your mom, DixieDarlin. Rock steady.

Alison

Hi Alison, thanks for replying. I will check on a neurologist. Also, sorry for the confusion. He is sending me to a hand surgeon for an eval because he thinks I need the surgery on my hand and elbow so you are correct. He said it will give me relief of symptoms and further damage.

What I mean by not following him completely or bucking his (for lack of a better work) authority/knowledge, he gets funky. Like he might pull my pain medicines and tell me to find another doctor.

I've had him storm out of the room one day when he thought the insurance wasn't going to pay. He was ticked off. LOL My Mother was there that day so she was able to see what I was talking about. Since I had a hard time finding a pain management doctor I just roll with the flow. I'm finding this is the case mostly but I think it is because my town is so small. I have great difficulties finding doctors.

So I don't mind him doctoring me with pain medicines... but on something like this...surgery...no. His sister treats me and does the Facet joint injections in my lumbar area. She totally has a different personality from him and it doesn't even seem like they're siblings. Don't get me wrong, I'm thankful that I do get seen and helped.

At any rate, I want to know all I possibly can, and be informed about it. I'd also like to know what might could be wrong with me in an overall view. I mean everything together. It seems now I'm being treated in parts, I have this wrong with the knees, bursitis in the shoulders, neck issues, from each doctor...understand what I mean? It doesn't seem like a larger picture of what's going on and that's confusing to me and making me second guess.

I have a vascular surgeon and he's the bomb! He's so good. I am so happy he is my doctor. He is all business but he is extremely good and thorough.

Thanks again and I don't expect you to respond right away, especially if it's late. I know you all have work and other things to do so I can wait. Blessings.

You have a vascular surgeon? Why, that's awesome! Not only would he be able to refer you to a good neurologist, he can help you to rule TOS in or out by doing some diagnostic tests.

If I were you, I would make an appointment with him before any hand surgeon. Hand surgeons, in my experience, tend to be soooooo ultra-specialized that they will very rarely look above the wrist - or maybe the elbow, if pushed - for where the trouble is emanating from.

Because of the controversy in medicine concerning TOS I think I mentioned to you before, you might encounter some resistance. So be prepared for that. A lot of us TOSers had to see several doctors before we finally got the right dx. That is what is known as the "TOS shuffle!"

Do you really think your pain doc would hold your meds hostage if you do something he doesn't like, or don't do something he wants you to do? That is outrageous! But you have kids, right? Use your "mommy" skills on him!

I really like your concept of the whole body being treated, rather than having to have a specialist for this, a specialist for that, ad nauseum. Sort of like holistic medicine. A lot of Western docs have adopted that mindset in the last decade or so. I hope you find one of them to put on your tx team!

Take Care, Darlin

Alison

Hi Alison, thanks for responding. The hand surgeon's office called this morning to make an appointment. Said my pain management doctor has sent a task to my PCP. Yes, my Vascular surgeon is awesome. Great man and doctor! I will call today and see about getting an appointment to find out if he can help or give a referral to a neuro doctor.

I think like you do after all the appointments, PT, surgery etc., I'm beginning to believe that I'm only being treated part by part. Like I said I have a doctor for the knees, one for the neck, one for shoulders, because those are the parts they treat. I was quite surprised when I found out that the one treating my knee's couldn't do my shoulder.

About the pain management, yes, I do think he might. When I first had to go to him, he would not give me any pain meds even though I was already on loratabs for months from my PCP. When I was in so much pain I couldn't stand it anymore, I questioned him and asked how he could allow a person to suffer so much being he was a pain management doctor. He was angry and told me if I didn't like the way he handled my care, find another doctor. Took me a bit to explain I wasn't personally attacking him.

Before he gave me any pain meds, he tried other things available and after a year he put me on Norco. However, he also told me that he expected me to lose weight and if I didn't lose weight they would stop. Never had a doctor do that before, so yes, I was sweating when going for my visit. My Mom said that wasn't professional but she always thought something wasn't quite right and told me to get someone else. I mentioned maybe he was establishing trust to make sure I wasn't a drug seeker. I understand the state/gov gives them a time with all this. It didn't matter anyway because due to my health issues I lost 70 lbs. He now has me on Morphine Sulfate twice a day, with some breakthrough meds. I asked for the breakthrough for emergency so I didn't have to go to the ER. Just so you know, I don't like to dog a doctor, it's against me, but this was what I experienced. There are some online reviews stating pretty much the same thing.

All in all I just think that my problems/health issues are connected, but that no one is seeing this. I may be wrong, but it's just what I feel is happening. I was able to see the Rheumatologist yesterday and she was very through. She did blood work and xray's so can't wait to follow up in two weeks. She gave me a hand out to read about Hydroxychloroquine (Plaquenil) when I return, so I'm guessing according to the test, she may prescribe this.

At any rate, I feel better since you all explained what I should be looking for and doing. I feel like I finally have the knowledge to make sure I get treated correctly or at least which way to go about it. So that I am thankful for.

BTW, I sent you a PM. Thanks.