Good news! But need advice....
 

Okay I went to the rhuemy today and was cleared for not having a rheumatoid disorder. Yippee...

But (I swear always another shoes to drop) it would appear as though my current meds still are not controlling the spasms that are literally ripping my joints apart. The rhuemy referred me back to the nuero, the neuro referred me back to my PCP, my PCP would rather I go through the neuro since it's the MS and she isn't a specialist in MS. She's familiar with it, yes, but has as much info on potential solutions as I have through the net.

Now the PCP will work with me, and the rhuemy gave me a few suggestions. One: OT and braces, kind of regardless of what else they do treatment wise I need braces and not OTC braces. Two: the baclofen pump. Three: change muscle relaxants or Four: possibly all of the above in an inpatient OT center.

So I can go to my PCP on Monday and present her with the options, but rather know she's going to look at me and ask which option I'd like. (Honestly, I want whichever option is going to help me in the long run)

So out of curiosity if those were your options which would you chose? Or is it time to find a new neuro? I mean am I wrong to think that the neuro should be the one helping to find solutions for MS symptoms over the PCP? Aren't they supposed to know more about the treatments and therapies over a family practitioner since they're the "specialist"?

Your neuro seems to be "passing the buck". I would want my neuro to be the one dishing out MS treatments. Plus, if you have insurance they will probably tell you that you have to get a referral from the PCP to the Neuro since it's a "specialty" condition. They just make it so hard............

True, many insurances do require referrals, for everything else that Humana is... At least it doesn't require any referrals and there's only a small handful of things the need prior authorization. Now if the neuro was in the bordering state I could understand maybe, if they said I needed to see my PCP first taking insurance into acct. But it's a really common insurance carrier in this area.

Either way my neuro's office was pretty clear, that for discussing those options it needed to be with my family doctor, not them. Just seemed bizarre to me, so I guess it's time to find a new neuro. In the meantime, has anyone here tried the OT/PT boot camp? Or rather an inpatient OT program?

Hi Starznight, I agree with you and Kitty that your neurologist should not be referring you back to your PCP for treatment options.

I like the idea of switching to a different neurologist. Your PCP seems to be accommodating, so perhaps she knows of a good one in your area. You may also possibly benefit from having a new specialist to give you a fresh perspective on your condition.

I switched neurologists when I thought mine was too rigid and steeped in tradition. When I chose another one I sought out a younger doctor who I thought would be more flexible.

Yes, the PCP has actually been suggesting for a while now that I see a particular neuro that she's familiar with. I rather trust her judgment on whether I'll like him or not, since she also knows well my old pain management doc (we both ADORE, him), she knew one of my old PCPs, the one that ran away from home on me :p and though she never worked with him really, she knew him from various functions and got a lot of his patients when he left.

So not only is she extremely accommodating, but she's also aware of what I'm looking for in my care providers. Not just a doctor with a brain but one who realizes I have one too. But also by switching neuros it'll put everyone in the same health group, that's also connected to the local university. So there should be fresh ideas bouncing about for sure, since many of the specialists also work as adjunct professors. And also with everyone in the same group they can directly view each other's notes, not just see lab results and dxs.

That will certainly make things so much easier on me. I mean I have my own medical files, labs, films and what nots that I've been toting around every time I see a new doctor. I have the info given to me by various doctors, but I'm lacking in what the doctor's impressions are, why they sent me for this lab or that one or why didn't they do, and the various other silly questions that I honestly can't answer sometimes. (A few of them I can answer with the younger doctors though, they didn't do that test, or that treatment, because the technology wasn't available at the time, I'm only 35 but some of these young doctors make me feel soooo old :( )

Starznight, it seems that you’re in an ideal position to make a switch. My current neurologist is affiliated with a university hospital, and it is so convenient to have everything in one place. All of my MRIs and test results are online and I can easily authorize any physician in the group to access them if I want.

You hit on an excellent point when you mentioned about doctors realizing that patients also have a brain. So many physicians, especially neurologists, seem to have a God complex and take such a condescending attitude toward their patients. I think this is probably less true of physicians in a university environment, but I am a retired academic myself so I’m probably a little biased in my opinion.

i also think the switch sounds like a solid idea.
it's hard to know which option i'd try. switching meds might be the easiest and cheapest. but you also have to give it time to work...or not.

a university system may also have all these services at their disposal.
i hate drs that put their patient in the middle. i don't think your dr is serving you very well.

Congrats on no rheumatic disease!:hug: That's good news.

In my opinion, I think a combination of therapies works well. I did not find baclofen helpful to me at all and it made me so groggy and irritable. So, I don't have any experience with that. Valium was way, way too strong. It probably helped with the muscle spasms but I don't know because I was sleeping all the time. I now take Ativan and that really seems to help me the best in regards to medications. I have done massage therapy and highly recommend it. The MT would do a gentle massage for 1/2 hour and over time, it really helped me a lot. I have done PT and OT and both have helped quite a bit. I could no longer afford the MT :( so as far as combination therapies have gone, the Ativan and OT/PT have worked well for me.

I don't know if that helps you with your questions as this is just my experiences based on what I have gone through.

A switch in neuro may be just what you need. Did your current neuro give you a recommendation for an MS specialist that you could see?

I do agree that sometimes it is great to see doctor's that are affiliated with universities. All my specialists are and I really like that not only can they view my test results and medical record, but they also know each other, for the most part, and are on committees together and such. It's kind of helpful in many ways. And, the cool thing is, most teaching facilities are up to date on a lot of therapies, new treatments, etc. I have found that to be a plus. All of my specialists are either professors or assistant professors who allow interns and residents to meet with me as well. You have many "eyes" looking at you and your record. I have also found that at a teaching facility they allot more time with each patient (anywhere from 1/2 hour to an hour). There are no 10 minute appointments.:D

I know that you will make the best decision based on what you have going on and with your doctors. Let us know what you decide.:hug:

Sad thing is, my current neuro is "supposed" to be an MS specialist.mthe biggest reason why I chose her even though she was affiliated with a health group I have little use for. But apparently while she can diagnosis it, she's not that great at treating it.

Does she see other neurology patients? Sometimes neurologists are considered MS Specialist due to CEUs and such but also see patients with other neurological conditions. I used to see a neurologist who was an MS specialist but he saw patients with other diseases as well.

You can always interview other neurologists and then decide if you want to stay with your current one or move on and see a new one. I did that and loved the new one that I am currently seeing.

2 weeks and a wake up till I see the new neuro :D. Of course this one also sees other neuro patients so could be out of the pan and into the next one. But my PCP did give me a script for Cymbalta to help with some of the pain, hoping that by relieving a bit of that it might slow the spasms a bit. We shall see.

In any event when I go to see the neuro hopefully she won't think I'm being too difficult of a patient when I list off the pharmaceuticals I've tried to date to help with the symptoms. Relaxers, anti-convulsants, narcotics, anti-inflammatories and now anti-depressants. As well as the drug list I can't take, anesthesias, cortisols and anti-histamines. (which aside from the cortisols I don't think the other two should be an issue, but who knows)

I do know that PT is pretty much off the table too though. Maybe not OT, but PT right now isn't going to work. I've called all the providers on my insurance's list and all of them say the same thing "Too many things... pick one" well if I could simply pick one thing to focus on, I probably wouldn't need to go to PT. And also from past experience, with those "too many things" they're all connected. You can't work on a leg without affecting the back, can't work on the back without affecting the legs and neck, can't work on the neck without affecting the shoulder and back... and so on.

And my soon to be ex-neuro wasn't any help even when I had seen her last. She could only suggest yoga..... really.... PT won't work for me so how about I place myself under the care of someone who has ZERO medical training cuz there's no way that's not going to end well.... :Bang-Head: Oh and swimming, forgot she mentioned swimming as well, to an aquaphobic suffering from body breaking muscular spasms... why did I like her again? :confused:

Yes, sure, I have largely overcome my fear of water, and my girls are lifesaving floatation devices, but still, I had also tried swimming last year. Knew activity was necessity, and in strengthening the muscles through swimming I ran into tons more issues with the knees, back, ankles, neck, shoulder and hand.

Is anyone else having spasms that are causing very real damage to their bodies? I mean they are literally tearing apart the soft connective tissues in my body. Ligaments and tendons being torn asunder by nothing more than muscular spasms. Bones being fractured, healthy bones, with excellent density, broken by muscular spasms. It doesn't just 'feel' like my body is ripping itself apart, it actually IS.

Honestly I really don't know what to do about it anymore. I am at a loss for ideas. I can only hope that the new neuro will have something more to offer than 'go for a swim', which now is starting to make me wonder if my other neuro was telling me in a roundabout way that I should just take a long walk off a short pier.:p

a great neuro I was referred to by my PCP once told me the following (the specialist I was seeing kept suggesting another specialist, and sent me back to my PCP... similar story to your current scenario)

"Let me let you in on a little doctor secret: when your doctor refers you to another doc in their chosen specialty, it usually means they don't know what else to do for you & perhaps the other doc can better treat you. Either that or he just doesn't want to treat you anymore."

If I were you I would grab that referral and run to another doc/neuro. Good luck! It's completely unfair to put the patient in the middle when all they want/need is help...

Well had my follow-up with the new neuro today. Apparently I've pretty much run through the medicinal therapies. PT doesn't seem like it will be much help for me either, given my past experiences with it. So she's got one more type of medication to try me on, an different anti-convulsent to take with all my other pills, and I'll be off to get an AFO/KAFO once it goes through the insurance and such.

I really liked this new neuro, she didn't break things down to laymen's terms as much as the other one did, but for me that's really not an issue (was more apprieciated for my DH who goes with me to the appts).

Honestly the DH seemed a bit more upset that she couldn't 'do' anything really. But I also do understand that's kind of the nature of the disease. I just wasn't willing, and honestly I'm still not completely willing, to throw in the towel completely when it comes to my symptoms.

Still there's only so much you can fight. Having a doctor who's willing to be upfront and realistic about my prospects, who's willing to listen to all the complaints, all the previous treatments before going into possible actions without trying to dress it up as something it's not going to be, I'm cool with that. I'm not looking for a miracle, just looking for an answer and explanation as to why I'm ignored on occasion. Or feel like I'm being ignored.

I don't believe this new neuro will ignore me however, she seems more than patient enough to explain 'why' she can't really help me, no matter how many times I might go crying to her in the future.

So I'm down to simple acceptance now. I can handle accepting a great many things when its the simple reality of the situation. I don't really like that my other neuro wasn't able to provide the lead in to that. She simply couldn't state in so many words 'degenerative disorder suck it up.' This one can, and I like that about her.

So a huge weight has been lifted from my shoulders. I'm still not being lazy, or crazy (well okay I am still crazy but that's a whole nother thing), I'm not just being a big old cry baby (in fact she was shocked at how well I seemed to be dealing with the pain when she could feel the spasms hitching in the knee and hear the cracking of the joint).

But more than all of that, I don't HAVE to force myself to get BETTER. It ain't happening, long and short of it. Might sound strange, but it's such a relief to know that.

As an "old-bie" I appreciate your post Starznight. My husband likes to say as a joke to me "IF you were really trying you'd get over this thing." Not joking, my MIL when she learned of my MS years ago said "If anyone can beat this thing you can". Uh, no, I can't!! When I couldn't get pregnant people said just relax and you'll get pregnant. Like it was in my control!


PT is Gross (large) motor control. OT think Fine motor (small muscle). Every moment is a OT/PT moment not just at their office. No, neither cures MS, just gives you something.

Had a neuro I really liked. He left to do research. In my thank you/farewell letter I thanked him not not pretending he had all the answers and playing a demi-God. Anything he could help with he acted quickly. (referrals, pain, etc.). He was a great doc to have on your MS team. Being an MS doctor must be hard. Patients don't die but they don't get better either.

Ugh I don't even want to think about the horrors of trying to get pregnant. DH and I tried many years ago, without success. And I was under so much stress over it I actually had a hysterical pregnancy :( talk about a blow when it turned out I wasn't. MS is nothing compared to that.

Thankfully though no one has suggested I could 'beat' MS. Although I can't even begin to count the number of times I've been told how I can 'handle' MS. My mother fully believes that if she ever had to choose a child to have something like this, it would have been me anyways. Not that she would wish it upon me, just if she was told one day to pick a child to have MS, she would have chosen me. My older siblings aren't.... strong???

I mean neither of them will talk to me, they've cut off all contact with me, and most contact with my parents. My nephew who was staying with us for a while, was banned from talking about me when he returned home. They insist they're 'mad' at me, though I've not done anything for them to be upset with me. But they simply can't handle what I'm going through, which makes my mother fully believe there's no way on earth they could ever even begin to handle it if it were themselves.

In any event the new drug seems to be calming the spasms, leading to what can only be described as 'squishy' pain in the joints. I mean they've been under pressure for decades, suddenly relieving that pressure feels... painful... but... not a sharp pain, not a dull pain, not a burning or stinging pain.... just a 'squishy' pain....almost like they're dislocated and swishing around under the skin. I dunno hard to explain, I've never really felt anything like it before and can't think of a better term than squishy, even though it's painful and squishy isn't an adjective usually associated with pain.

So I'm not really sure if it's a good medication, or not.... it causes pain, but I was already in pain, but it also calms the spasms which was causing the pain I was in before.... Well in any event I go back in a month to the new neuro who wants an MRI of the spine now, so I'll give it a go for that long at least, maybe 'squishy' is normal and I just need to get used to it. :confused:

[QUOTE=kicker;1155299]As an "old-bie" I appreciate your post Starznight. My husband likes to say as a joke to me "IF you were really trying you'd get over this thing."

Even though I've has PPMS for 20 years, my husband
still complains that I have no idea if I had continued the ABC shots after taking Copaxone daily shots for about a year, followed by seven (7!) more years of Betaseron shots every other day, all the while the MS progressed and progressed.

Even though NOW tbey say the shots never did anything for PPMS, and I've shown him proof, I know he still thinks I stopped the shots for no reason and maybe I might not be so bad off if I'd continued. He doesn't say it as often, but he brings it up often enough.

So do I think your hubby really believes you just haven't "tried" ? You bet I do. I bet In his mind he knows he's not just kidding.

And you know you've "tried" all you could.

I've dealt with it (hubby's unwillingness to accept the truth for decades. Neither hubby has accepted things for what they are. (sigh...)

Msbluis

I'm PPMS and will be 60 soon, DXed 2002. Between the not being the 23 year old girl he married, growing red hair out gray and no longer being size 2 AND being in a chair with MS sometimes DH seems dazed and sucker-punched! Life is not a Life-Time movie. Getting older is tough enough without throwing a debilitating disease in the mix. Fertility treatment (I'm so old that was still in the days health insurance covered it until they decided, like plastic surgery, this should elective otherwise we could never have afforded it!) so we have twins who's college costs means we have debt for awhile.

Like Lilly Tomlin's character used to say "It's always something".

I did Rebif (makes the ABC's CRAB) which made me feel like the flu every 3 days, Novantrone which made me vomit but not lose my hair in that short time of doing nor (to kids' disappointment) pee blue (another potential side effect) and feel much better now without both.. For pain and discomfort doctor prescribed Vicotin which did nothing (I must be one of those Opnid resistant people) and with some physical behavior changes have no discomfort now. I know with MS everything could change in a blink of an eye.

I think I do feel the most sympathy for my DH over myself. He married an energetic strong near Barbie doll (my hips are smaller :p) and ended up in a few short years with a crippled and weak stay at home pillow, whose quickly beginning to resemble the stay puff marshmallow man.

I mean I used to be able to lift 200lbs with ease, and could lift up to 400lbs without really straining myself. I could run 5 miles without being winded, sprint a mile without issue. Work 60+ hours a week training horses and still keep the house spotless and ensure there were freshly baked goodies everyday.

Now we have to buy milk by the half gallon because I can't lift a gallon of milk. Baking... forget about it, unless it's a really, really good day. And trust me, the house is far and removed from spotless. It's not quite a health hazard as of yet, but if I get too much worse it probably will degrade to such.

But he's a dear who doesn't complain much, and refuses to divorce me. I've asked for one many a time, hoping he can at least go out and find someone a bit more capable than me.

At least he's some help around the house, he'll wash the laundry (never puts it away but hey) He'll wash the dishes (sometimes putting them away) He'll vacuum (like a man) We both go grocery shopping, and he brings in all the groceries and puts them away. He cooks (amazing cook!!! my parents are often over seeking dinner) He tries to clean the bathroom (that's to say he sprays the tub with scrubbing bubbles and spritzes the room with Lysol)

And everyday when he gets home from a long day at work, rather than complain about it, he asks me how I'm doing, and if there's anything he can do for me. (He's an A/C repair man, so he's coming home drenched in sweat, covered in mud and insulation with a look of sheer exhaustion) Even if there was something I needed when he gets home, I can't bring myself to ask him for it half the time. And I feel terrible because we used to get home about the same time. Most of the time I would bring him a cold drink, give him a nice back rub, help him relax as I listened to his day. Those days are gone.

Instead I'm left irritated because he'll tell me he cleaned the bathroom, and you can't enter it for the heavy scent of Lysol, scrubbing bubbles will still be dissolving on the bathtub walls and the toilet looks like it hasn't been cleaned since the Nixon administration. He'll want a pat on the back because he did the laundry, and I'll go into the bedroom to find a mountain of clothing piled up on the bed, generally with two cats playing in it.

So it's a weird kind of mix of sympathy, guilt and disgust. The kind of thing that I guess only really comes about when you're married to someone you're supposed to be with. While completely different circumstances, my mother feels about the same when it comes to my father. She can sympathize with him, has a bit of guilt, a ton of disgust (over cleaning habits same as me :p) but they've held up for 40+ years, with no sign of ever going their separate ways until one is in their grave.