So I have been have some different neurological systems and now am awaiting an urgent MRI. My Rheumy thinks it is MS. So now can not take my Remicade. Any suggestions on how to best prep for having to stop the Remicade which I take every 4 weeks? I am very nervous I do not need anymore dx. PsA, Trigeminal neuralgia, ?fibromyalgia and now ? MS. Just great…
I'm glad that they are able to get you in fast for an MRI.
Not that it makes you feel better, but in your case, the fibromyalgia may have been an early symptom of this neurological issue, rather than a different diagnosis. Early, aggressive treatment is what is needed for MS, so I'm glad that you are getting in fast
Hi Kirsten, what a difficult road!
I really feel for you, and I know MS is often an even bigger challenge than the other diagnoses. But do the best you can not to dwell on it until you get results - easy to say I know - I nearly lost the plot waiting 3 weeks for a breast lump biopsy when I was 32!
I too am glad you are in for an urgent MRI - know that we are thinking of you.
Reply by Isabella 4 hours ago
I am so sorry… I am new to all of this, so I have no suggestions… just sending you lots of hugs
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Hang in there, thinking of you…glad your MRI is quickly on the cards x
Hugs, Kirsten! So glad you're getting an urgent MRI and don't have to sit and wait and wonder ... well, sit and wait and wonder less, I guess!
As far as stopping Remicade ... when I had to go off the biologic I was on to have liver tests done, I was completely unprepared for how horribly I'd feel. I'd kinda forgotten how bad it could get, and I didn't have ANYTHING set up. Should I need to go off Remicade, I'd speak with my rheumy and find out what medications I can take (prednisone, etc.) to help me cope with the inflammation, pain, etc. I'd also make and freeze meals while I'm feeling relatively well, so that when I'm not, I'd have something to pop in the oven or crockpot without much other work involved. I'd also alert family and friends to a possible impending decline in my health and find out who would be willing to be "on call" to bring me a meal or help me with cleaning and other tasks. When I was at my worst, I found a "Help Wanted" list on my fridge worked well - I'd write or type up a Help Wanted sign with a list of what people could do should they feel so inclined - a load of laundry, sweeping, vacuuming, loading/unloading the dishwasher, handwashing dishes, wiping down counters, etc. Then when someone was visiting and asked if there was anything I needed help with, I could just direct them to the list.
I hope you get answers quickly, Know that we are here if you need a shoulder to cry on!
My rheumatologists thought I might have MS too. Great. So he got me an appointment with the leading MS guy here in town and I had a complete MS work up, nerve tests, blood tests, I don't know what all. NO MS! My symptoms (which are gone now) were attributed to something else.
So here's hoping you don't have MS. It is equally possible you don't. I was walking around with that thought in my head for more than a month while I waited for my appointment with the neurologist; I saw the looks my poor husband gave me, and that was depressing. I had the answer within a week of my appointment, so I didn't wait long.
Good luck to you.
Oh, Kirsten, no that isn’t the greatest, is it. Here’s hoping for a quick MRI appointment, and an answer soon after. Let us know how it goes.
When were you DXd with Trigeminal neuralgia?
I am so sorry this is happening to you Kristen. I do know that when I have been waiting on tests and appointments for very scary things I have had to stop my mind from going to the "worst case scenario". I can become very ruminant on the ugly thing scaring me. I used readings that inspire me, Garrison Keillor on an MP3 (though a comedian would work just as well. I used meditation and walking in nature to sort of reset my thinking. It helps so we don't make our fears our reality.
I echo Nym's things for making it easier while you are off the Remicade. Any prep you can do in the kitchen will make it easier. I buy bags of frozen vegetables as they are cut up and washed and add to spaghetti sauce or macaroni and cheese.
If I am in bad shape I but Stouffers and add vegetables to it. I make double and triple batches of things I know I will need. I make big batches of oatmeal with barley and quinoa and either raisins and brown sugar or home made apple sauce and maple syrup in the fridge. I am more likely to eat breakfast if the prep is easy!
I also line up clothes I don't have to struggle to get into: leggings with long sweaters, sports bra and compression stockings that I wear every day to reduce the swelling in my legs. I keep one tub clean so I can bath for pain relief. I also get my meds lined up as well as .Salonpas and Tiger Balm patches and splints.
I hope this helps. It may also help to remember that when we have one auto immune disease we can have symptoms of other auto immune diseases but on testing we discover we do not have the disease just some symptoms.
I will keep you in my thoughts and prayers.
I have no advice to give you but I will be keeping you in my thoughts and prayers
I was Dx with Trigeminal Neuralgia this past summer. Had what I thought was tooth pain. Kept going to the dentist and there were no cavities, no issues. Even saw a speacialist in Dental surgery, saw ENT and finally Internal Med. was Dx and started on tegritol. After couple weeks on med attacks stopped. Had a flare in the fall, uped the med and the attacks went away. Had an MRI that showed small lesions everyone kept saying do not worry about them. so that is the Trigeminal story in the short version.
tntlamb said:
When were you DXd with Trigeminal neuralgia?
Kirsten, I had the same thing happen to me (regarding Trigeminal Neuralgia). In 1996...tooth pain, partial crown, root canal, full crown, another root canal (they found another root on the tooth), finally after multiple opinions they pulled the tooth....bad news - I still had the pain. They put me on Amitriptyline and after a year the pain went away. I had a tooth implant in 2010. It took me that long to be willing to let them play with that area again. Anyway, I don't have pain there anymore except when we have big storms. The barometric pressure makes it ache a bit. I hope you can remain pain free in that area. It isn't any fun.
Kirsten said:
I was Dx with Trigeminal Neuralgia this past summer. Had what I thought was tooth pain. Kept going to the dentist and there were no cavities, no issues. Even saw a speacialist in Dental surgery, saw ENT and finally Internal Med. was Dx and started on tegritol. After couple weeks on med attacks stopped. Had a flare in the fall, uped the med and the attacks went away. Had an MRI that showed small lesions everyone kept saying do not worry about them. so that is the Trigeminal story in the short version.
tntlamb said:When were you DXd with Trigeminal neuralgia?