When Bodies Attack

I had a rheumatologist appointment yesterday. Things are not good.

I want to first say that my rheumatologist has NEVER seen someone have the crazy issues I have, which are definitely not typical with PsA, so don't freak out that this could be you someday!
I won't get into specific symptoms unless someone would like me to.

My rheumatologist is not happy with how quickly I'm going downhill and other neurological symptoms that have cropped up. I had nerve conduction testing done, and extensive x-rays. The "expected" neuralgia showed up, and zero nerve conduction in the arches of my feet, and a whole bunch of other stuff I didn't understand, as well as more partial fusions seen via x-ray. My rheumy did a basic neurological workup and did not like what he found at all. With eyes closed, I have numbness here and there all the way up to my ribcage. I'm being referred to a neurologist and have a MRIs set up for my brain and cervical spine (Friday at 7am, 45 minutes away - what was I thinking??? and Monday afternoon). I also need an MRI of the rest of my back, but getting insurance to approve it all at once is nearly impossible. I've also been taken off Remicade, which is the only thing that keeps me on my feet, and is also treating my autoimmune hepatitis.

For now, we're concentrating on trying to figure out if there are issues with nerve impingement, if MS is a possibility, if it's Remicade related, or if there's something else going on. My poor Rheumy kept saying that he really doesn't like what's going on with my body and I was trying to make him feel better, which made him feel worse. And one of the nurses told me I need to have a serious talk with my body and tell it to knock it off. LOL I'm just trying to have a sense of humor about it all because I really don't have any concrete answers yet. I'll freak out when it seems appropriate to do so. :)

Ugh.

I like your final thought, that you’ll freak out when you have reason to.

I’m sorry to hear Nym. It sounds like your body is indeed attacking on more fronts than straightforward PsA can account for!

When I first was diagnosed with this disease, I didn’t imagine myself being thankful I have “straightforward” PsA!

Wow, just wow.

Now after reading your other post on your fall home preparedness list and then this I will say that maybe you need to take it easy for a bit! I have had arthritis in my spine for decades and I will tell you that when I finally stopped doing so much, many of my nerve symptoms settled down. It took a few months but when you are really physically active it can get hard to see what causes what. Especially in that complicated neck and shoulder area. My neurologist gave me a list: No carrying anything... laundry, groceries anything. No working overhead, like painting ceilings. No golf, tennis, many types of weight lifting exercises. Seemed extreme, but I have so much more sensation in my arms and hands and almost none of the screaming burning pain from really aggravating nerves that I used to need traction twice a day to alleviate.

Sometimes they can see different things in a cervical MRI done standing up vs. laying down BTW. I hope you get good news and they don't see any MS type stuff.

That sounds very alarming, Nym. I hope it's something fixable, and that it causes very little pain and costs very little money to fix. I appreciate your last line, as well- I often say something of that nature to my very anxious or paranoid clients, and I think it works in this sort of situation as well. A "don't count your chickens before they hatch" or a "don't borrow trouble" sort of sentiment can be so helpful in very stressful situations.

I know anecdotes don't make anything easier, and I know you're not sure what's going on, but MS isn't a death sentence if that is the issue- I have a friend with MS and a number of other autoimmune issues, and she's kicking butt. She finally retired a couple of years ago, but she is still active- volunteers at her grandkids' schools, does craft groups, works in her yard, helps out with support groups- she inspires me, even when she can hardly walk. You seem like the type to push though, as well, and I admire that immensely. Wishing you the best of luck, and the best of medicine.

Thanks, everyone. I'm remarkably calm about the whole thing. OK, I'm slightly freaking out over having to get out of bed at 5am tomorrow to get to my first MRI on time, but other than that, I'm just waiting for the official word as to what's going on before reacting. I think I've come a long way since I was first diagnosed with PsA - back then, I'd be googling all the what-ifs and my anxiety levels would be through the roof. At this point, I'm just happy to have a rheumatologist who is fighting to get the necessary tests done and who is genuinely concerned about my health, five kids who are helpful beyond measure, and a husband who is supportive, and is really getting how ill I am and taking over things like laundry, dishes, etc.

Most of my fall list will be done by my kids and husband. The cooking is something I enjoy doing and can, for the most part, do in bits and pieces, or get the kids and my husband to help with. If there's one thing I've become good at since my PsA diagnosis, it's delegating! :)

You sound very level-headed. :) Let us know how it all goes!

nym said:

Thanks, everyone. I'm remarkably calm about the whole thing. OK, I'm slightly freaking out over having to get out of bed at 5am tomorrow to get to my first MRI on time, but other than that, I'm just waiting for the official word as to what's going on before reacting. I think I've come a long way since I was first diagnosed with PsA - back then, I'd be googling all the what-ifs and my anxiety levels would be through the roof. At this point, I'm just happy to have a rheumatologist who is fighting to get the necessary tests done and who is genuinely concerned about my health, five kids who are helpful beyond measure, and a husband who is supportive, and is really getting how ill I am and taking over things like laundry, dishes, etc.

Most of my fall list will be done by my kids and husband. The cooking is something I enjoy doing and can, for the most part, do in bits and pieces, or get the kids and my husband to help with. If there's one thing I've become good at since my PsA diagnosis, it's delegating! :)

Any results from your testing? I hope they found a great big bunch of nothing, or at least nothing dire, something fixable.

Yes, any results?

I FINALLY have some results. Nothing surprising on c-spine, and nothing that would have anything to do with my neuro symptoms. Brain mri results inconclusive (nonspecific white matter changes consistent with hypertension - which I don't have - or old age - I'll be 40 next month, or neurological issues). I need to see a neurologist, but the neuro at the hospital closer to me isn't taking patients until late February at the earliest and the neuro affiliated with the hospital my rheumy is affiliated with won't take me because don't live in that county.(We found this out after the neuro had my info for a week and spent 20 minutes on the phone with my rheumy's office manager making arrangements to get me seen asap. They were told I just needed to personally call to set up the appointment, and when I did, they said they couldn't see me because I don't live in their county.) My rheumy is may order lumbar puncture and other testing himself, as the "nonspecific white matter changes" could be due to multiple sclerosis, which is his suspicion at this point. According to my rheumy, even the Dec 11 appointment is too far away. He wants me seen NOW, which is freaking me out just a bit. He's calling the neuro who won't take me (according to their office staff, anyway) and seeing if he can get me in, and if not, will find me a different neuro to see asap. I'm hoping to hear from my rheumy on Monday with some sort of neuro referral.

My next Remicade infusion was supposed to be this coming Wednesday. I'm worried about how quickly I'm going to go downhill as the days pass.

Oh, Nym, you’re in my thoughts. You’ve had enough misery already, and you don’t need more. But life’s not like that, is it?

Very best of luck. Hope for reassuring news!

C

I hope you can get in quickly. This is a lot to be dealing with.

Hi Nym, sorry to hear all you have going on! If you don't mind, you mentioned if someone asked, you'd talk about the symptoms you're having, so I'm asking. 40 is definitely not old--but I thought I was old at 40, too. I remember telling my doctor when I had plantar fasciitis at 40 that maybe it was just the aches and pains from old age. He nearly fell off his chair laughing!

But, you are just too young to be dealing with such huge health issues....well, I guess any age is too young....but glad to hear your kids and husband are helping you. Hopefully, you'll get a neurologist appointment and insurance will approve the MRIs so you can quickly get to the bottom of all these problems!

So sorry to hear this Nym. I have been dealing with these same types of issues for several years and did not have a PsA diagnosis and treatment until last year. At That time I was also having serious migraine issues and had a neurological workup and an MRI was ordered as well. It was discovered that these migraines where caused by spinal stenosis, excacerbated by PsA related issues earlier in my life and an injury.For me it was so bad that I had numbness in my face, feet,legs and hands. I also had a lot of twitching and inability to sit still. I did not sleep for more than a few hours and I was virtually non- functioning. Insist that the insurance take care of this issue.

You must do everything you can to just relax and calm yourself during these procedures, I always try to think of them as spa days and I am being treated to a time that no one can interrupt and disturb my peaceful bliss. I know it's noisy but it isn't altogether uncomfortable and you get the day off of work! In the end you will get sorted out as to what your PsA needs are now . I always have a hard time remembering it can change from minute to minute.I hope that your next checkup is a much better one. I know it will be because you will have all of this sorted out and be on the road to treatment success:) I'm sending you good thought today and I hope you have a great day!This to shall pass....

Sorry to hear, big hugs. Good luck with the other scans. Maybe it wont be too bad

Nym, I hope you can get in quickly, and that you get some clarification and hopeful news from your providers.

Nym, this is a lot to absorb. I hope you are seen quickly, and that you get good answers and good treatment. And that you are able to have a safe and happy holiday this week with your family. Thinking of you.

Thanks everyone! I typed up a big long response and then my phone ate it, apparently. Trying now on my computer.

No news yet ... rheumy is still working on finding me a neurologist.

My symptoms include shooting pains in my head; tingling and numbness in my arms and legs; my leg / legs going out from under me without warning; constant numbness in places from my feet to my ribcage; muscle spasms/cramps in my legs; leg weakness (worse on the left side); arm weakness (worse on the left side); decreased bladder control, spasms in fingers and eyes; memory issues; and dizziness.

Hi NYM, thinking of you. We're all here for you. You're such a wonderful person. I know there will be a positive resolution.

Thanks, Scott!

Finally back and recovered from Thanksgiving trip to PA. I don't recommend 8 hours driving a 12 passenger van with five kids. It's taken me five days to not be totally wrecked by 10am.

Still no neurologist appointment nor word from my rheumy. To add to the stress, repairs to my house are partially done, and no word from the contractor as to when they'll be finished. Snow is in the forecast next week and there's no siding on a good portion of the front of my house. Symptoms are worsening. I may end up seeing a neurologist via an ER visit at this rate.