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Frustruated with doctors!!don't know what to do:(
#220647 11/02/11 01:58 PM
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Okay, I finally went to see the Neurologist as I said I would after finding out that humira game me side effects of Ms and now I don't know who to believe or what to do. Can you believe that when I saw the neurologist yesterday he examined me and looked at the MRIs and told me that he doesn't know whats wrong with me. He also feels that I don't have AS..He says he sees a spot but patients that have MS has multiple spots. What in the world does that mean???? He says there is a neurological problem that might be from vitamin defficiency, but he needs to wait until results from blood work comes in to confirm. I know that my rheumatologist told me not to see that one particular neurologist because he did not like him. I went to see him, because my friend has MS and she says this neurologist is wonderful. I can't believe this but he is no where near wonderful. He had the nerve to tell me he did not like the rheumatolist I see. I think something happened between them and it seems like they are taking it out on me. I made another appointment to see another Neurologist, because it is my health their talking about. In the meantime I am in sooo much pain and now I am back to square one again..Do I have AS or MS or what??? This Neurologist told me the Hlab25 is negative, my xrays and MRIs are all negative for AS, and that he doubts I have AS. I am frustruated I have pain just as we all have described with AS and the fatigue its terrible. My stiffness in the morning its horrible and believe it or not I was doing great when I was using Humira up until I started having symptoms of MS. Now since I stopped the humira for over a month now, the pain its unbearable and I still have neurological problems. Sorry I had to vent but this is overwhelming. Any advice or suggestions for me are greatly appreciated..Thanks for listening:)

Alexis

Re: Frustruated with doctors!!don't know what to do:(
alexis98 #220650 11/02/11 02:04 PM
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Alexis, sorry sorry sorry. I so wish there was a class we could take, how to deal with doctors.

Now, I would not go to a doctor that my rheumy asked me not to see. You should never listen to a friend over a doctor with this kind of issue. Esp if you like your rhuemy. Your rheumy will find out that you saw the "doctor he told you not to see". He might question if you are going to listen to him regarding everything else. If you don't like rhuemy--go to a new one, now. If you like him, call your rheumy and tell him immediately, what you did and how sorry you are to have done it.

What did your rheumy say? I forgot, what are your neuological problems? I was a bit anemic (not even that bad) and started on B12 pills and gosh, it didn't clear up my tingling.

If the Humira worked that means you have some sort of inflammatory arthritis--be in AS, RA or maybe PsA. That side effect is very very rare, and stops if you stop it immediately. It usually doesn't turn into MS.

Anna



Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Frustruated with doctors!!don't know what to do:(
Banana #220652 11/02/11 02:11 PM
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Thanks Anna!! I regret going to this neurologist and I should off listened to my rheumy. I am scheduled to see the other neurologist that my rheumy referred me to. Hopefully he can find out what its making my face feel as if it is getting paralyzed. I get this weird feeling on my face all the time. I was also getting blurry vision and a little mental confusion. This is why the humira had to be stopped otherwise I would still be using it. Humira did wonders for me. Now the pain its unbearable. Thanks for listening:)

Alexis

Re: Frustruated with doctors!!don't know what to do:(
alexis98 #220653 11/02/11 02:37 PM
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Sorry you are feeling so frustrated and overwhelmed!

When the neuro made the comments about the spots did you ask what he meant? I think he is probably referring to "white spots" which are areas of demyelination in MS, but I'm not up on the details of MS.

Several vitamin deficiencies can cause neurological symptoms - B12 is one that is frequently mentioned. Is that one of the labs you have had run?

I'm not surprised the neuro doesn't like your rheumy when your rheumy doesn't like the neuro! Sounds like there is some history there, as you said.

A neuro isn't in a position to confirm or deny the spondy diagnosis. Lack of "evidence" as you described makes the diagnosis hard but not impossible (I too am B27- and have no evidence on x-ray or MRI, but meet the "inflammatory back pain" description and have no other explanation of my symptoms.) If your rheumy agrees that you seem to have spondylitis, and given your response to Humira, it's clear you must have SOME sort of inflammatory problem going on.

Since the neuro says you don't have MS, call your rheumy and see if it would be OK to get back on the Humira.


Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates
Re: Frustruated with doctors!!don't know what to do:(
JenInCincy #220663 11/02/11 05:14 PM
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The fact that Humira helped with the pain points to one of the inflammatory arthritis. If your neuro problems have been continuing after you stopped the Humira, I would think that it rules out the Humira as the cause. I also would call the Rheumy and ask if I could go back on the Humira.

I am hoping that you can get this all sorted out soon.


Donna
Suffering since a teenager.Dx with AS Dec 2009. Dx with ulcerative colitis 1998, both knees replaced 2006. GP said I had "some kind of inflammatory arthritis" 25 years ago. It has taken 50 years to get a Dx.

Mobic, Nexium, Naproxin, Lipitor, 6-MP, Nexium, Miacalcam, MSContin and 2 Norco for break through pain
Re: Frustruated with doctors!!don't know what to do:(
avonldy #220667 11/02/11 05:45 PM
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Sounds like these drs have a problem with each other, you don't need to be in the middle of a P*$$*ng match. Do you have the MRI results? Sorry, can't even think of the correct wording, the written results. Not sure if a pinched nerve would cause any of it, someone needs to explain the spot to you, though. I would go see the other neuro before asking to go back on Humira, JMO.


I would be unstoppable, if I could just get started.

Re: Frustruated with doctors!!don't know what to do:(
mrye4709 #220685 11/03/11 03:11 AM
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Hi Alexis...you sound just like me. I've had the same experiences unfortunately. I was one of the few to get neuro symptoms from the Humira. But I know how you feel...it was making me feel great so it really sucks not to be able to take it anymore. The good news is, if it really was due to the Humira like mine was, those neuro symptoms will go away...mine did. It took about 4 months for mine to go away, but I've heard it can take up to 6 months for it to completely get out of your system. I'm also negative for the HLA B27 gene and don't have any fusion. But, more and more we're finding fun signs of the inflammation. Just hang in there, and I agree...definitely see a new neuro. Even tho mine didn't have the best bedside manner, she knew enough to know there was no way I should take the Humira anymore, that it was likely the cause of the new neuro symptoms. I'll be thinking of you...take care and keep us posted!


Beth
Re: Frustruated with doctors!!don't know what to do:(
Beth #220734 11/03/11 06:38 PM
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Thank you all for the advice and for listening!!! Today the pain is very bad and the face problems are still there, but I know that hopefully soon I will know what its causing all this. I definately can't wait to start the humira and I can feel the difference. Humira worked wonders for me up until this problem started. Anyway thanks again and I will keep you posted after the new Neurologist examines me and gives me his opinion.

Alexis:)


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