So I am new here and having a week from hell. I have been dx'd with psoriatic arthritis for 12 yrs. but probably suffered mild bouts for more like 23. All that being said, for some time now new things have been happening. New, scary, neurological things which after 2+ yrs of clear symptoms I landed in a neurologist office. He was a very thorough concerned man. He ran a full gamut of tests which found bulging discs, and arthritic damage impinging a nerve in my neck. But no clear signs of MS until he read the last stinking test, which was through the roof high. This Doc started out thinking it was lupus or Sjogrens, then after these tests was he concerned about MS. So I spent 2 months waiting on this appointment so I could do what is needed and then move on. Then only to spend 2 more weeks worrying about lupus. Go through a nerve conduction study and spinal tap, WHICH I DO NOT recommend (lol), then no diagnosis. He was not sure what I had, but he said it was clear that I have an auto-immune disease of the central nervous system. He was a great doc that I will go to again if it is called for but he wanted me to see an MS specialist. 4 months, FOUR MONTHS of waiting and psychologically prepping myself for any bad news, driving 2 hrs only to see the most awful Doctor I have seen in a long time. She did not read the 5 page medical history I had to fill out and bring. Before she even examined me told me that I do not have MS. Then seen my arms and said "OH! you have psoriasis!" REALLY?!?! That is fine, I do not want MS, but since it was not MS I do not think she wanted to be bothered by me. She was condescending, telling me that my neurological signs were not neurological that "sometimes they just happen and they don't know why", I got that answer twice about different symptoms from this renowned expert. She tried to say the anti bodies in my spinal fluid was just probably from my psoriatic arthritis(!!), when I told her that the other neurologist said that was impossible (because that was the first thing I had thought of) because PsA does not cross the blood/brain barrier her response was well he does not see patients with PsA everyday. Really? Now the other guy doesn't know what he's talking about..NEVER MIND that you can not find even ONE article stating this even a possibility. Told me that I was over weight 5-6 times, partially blaming my issues on that. I want to yell the symptoms came before the weight, but I did not. Maybe the lady thought I was delusional about my weight, I am working on it and have lost 15 pounds. She said she thinks I have a sleep disorder from my weight and that is also part of the problem, which I needed to go to someone to investigate. I wanted to say who a NEUROLOGIST? but since I could not wait to get out the door and she couldn't wait for that either, I kept my mouth shut. I was furious and wanted to cry, it took me back 15 yrs when a doctor told me my PsA (before my dx) was depression. After a long ride in silence I decided to see what the new Rhuemy that I see Friday has to say and try to leave this awful person in my rear view mirror. Now I am sitting here with unexplained abdominal pain, Bronchitis, miserable and unable to sleep from the meds, wondering what my visit tomorrow will bring. 15 yrs has made me more patient but this have proven difficult for me to wait, standing on the precipice of losing my mobility or my mind not knowing what to educate myself about, not knowing if this will cost me my job or independence. I already have 2 things that cause disability and loss of mobility, I don't know how I will keep working with all this. Sorry to be a downer, just having a bad week.
Marie, what a difficult time, I really feel for you. The uncertainty is horrible but then to feel like you’ve been condescended to is so very frustrating (and would make me incredibly angry too). Keep looking for answers - you know how long it took you to find them with PsA - and in the meantime, remember a docs bedside manner (good or bad) is all about them, not you. Sending you gentle hugs 
Hugs,Marie! What an ordeal to go through without getting a concrete diagnosis. I hope your new doctor has some answers or can point you in the right direction.
I,too,am having neuro symptoms. After 3 MRIs and 2 EMGs, I'm hoping for some sort of direction in which to proceed for diagnosis at my follow-up neuro appointment next week. Lumbar puncture is probably the next step, and one I'm definitely not looking forward to!
Ok, now I’m going to be really naive and ask what neurological symptoms are, as opposed to the inflammation of PsA impinging nerves and affecting their function? I only ask because when I get a bad flare, I always end up with nerve pain, sometimes numbness in parts, and during my onset flare I had numb feet and struggled to walk, get up stairs, sit, got to the toilet etc
For me, it's increasing weakness on my left side, urinary incontinence, numbness and tingling that seem different from the "normal" neuralgia type symptoms, burning sensations, muscle spasms, and my leg/ legs going out from under me unpredictably.
So I’m guessing then that it also doesn’t seem to be flare related? Like it increases / changes independently of your PsA?
So sorry you are having such a rough time. All the effort for answers just to be back in same spot has to be just as agrivating as the doctor was. Spinal tap to top! Those are awful o have had 2 and even if they said they could cure PSA with one I don’t know if I would! Hang in there rant when you need we understand and are happy to listen.
Marie, welcome here and yes, that is one helluva bad week. But I love your attitude: leave that doctor in your rear view mirror and move on. Today, I think, was your rheumie appointment. Let us know how it went.
Hugs to you! BTW, our “office” is open nights and weekends, so rant and vent here. We get it.
Thank you Jen! I am trying to keep a positive attitude but it has been hard this week :-)
Jen said:
Marie, what a difficult time, I really feel for you. The uncertainty is horrible but then to feel like you've been condescended to is so very frustrating (and would make me incredibly angry too). Keep looking for answers - you know how long it took you to find them with PsA - and in the meantime, remember a docs bedside manner (good or bad) is all about them, not you. Sending you gentle hugs :)
Nym: If you do the lumbar puncture make sure you have 2 days to lay down flat or at least reclined. They told me 24 hrs and it was not enough, so I ended up with the dreaded spinal headache, which in turn set me back on recovery. I will definitely keep you guys posted on my progress cause I was wondering if anyone else was having this type of trouble.
nym said:
Hugs,Marie! What an ordeal to go through without getting a concrete diagnosis. I hope your new doctor has some answers or can point you in the right direction.
I,too,am having neuro symptoms. After 3 MRIs and 2 EMGs, I'm hoping for some sort of direction in which to proceed for diagnosis at my follow-up neuro appointment next week. Lumbar puncture is probably the next step, and one I'm definitely not looking forward to!
No advice here, but just sending positive thoughts you get this sorted out. You will!
For me it is pin & needles in my feet, tremor in my hand, skewed vision, restless leg, spasm in my feet, numbness in my face , balance problems and the Big KAHUNA is memory lapses. Scarey stuff.
Jen said:
Ok, now I'm going to be really naive and ask what neurological symptoms are, as opposed to the inflammation of PsA impinging nerves and affecting their function? I only ask because when I get a bad flare, I always end up with nerve pain, sometimes numbness in parts, and during my onset flare I had numb feet and struggled to walk, get up stairs, sit, got to the toilet etc
Wow Marie, vision changes and numbness in my face would have me well freaked out - I can really understand wanting to get that resolved.
Thanks Rachael! I am not usually such a negative nancy but I had to get that off my chest to some folks who know what this is like!
Rachael said:
So sorry you are having such a rough time. All the effort for answers just to be back in same spot has to be just as agrivating as the doctor was. Spinal tap to top! Those are awful o have had 2 and even if they said they could cure PSA with one I don't know if I would! Hang in there rant when you need we understand and are happy to listen.
Thank you Seenie! It was helpful to get it off my chest and I knew that no one with PsA has not had to deal with some asinine doctor at some point. I have to say that I stopped keeping abreast of PsA because they were so limited in the what accepted as PsA symptoms back in the day. I am so pleased to see they now recognize symptoms all us sufferers knew were real. It gives me hope for any of my kids that develop this disease. The doctor told me of a new drug today I had not heard of that sounds really exciting. I am going to make a separate post giving my update.
Seenie said:
Marie, welcome here and yes, that is one helluva bad week. But I love your attitude: leave that doctor in your rear view mirror and move on. Today, I think, was your rheumie appointment. Let us know how it went.
Hugs to you! BTW, our "office" is open nights and weekends, so rant and vent here. We get it.
Well I had the visit with my new rhuemie, what a night and day difference! I told him despite the one negative blood test I was still concerned about lupus (because I know someone that got a false negative and later turned out to have it). So he is doing a more thorough lupus panel to rule it out, as he said CNS lupus is a great mimicker of MS. Which is true, the big difference is that lupus causes symptoms without causing any permanent damage whereas MS does some permenant damage. He said that the awful neuro I met this week was wrong that PsA will not cross over to the spinal fluid and that having antibodies in the spinal fluid was not to be ignored as it is very serious. He wants to put me on a new drug, Otezla, but since I am currently not taking any meds he says I am going to have to take Methotrexate for the next month and then try to get me on Otezla next month. That new drug sounds exciting, no cancer worries no loosing your whole immune system. So I will see him in 1 month and go over the test results and make a game plan. He seemed to be leaning towards MS still. He said he thought I needed to talk to a MS specialist that asks questions and listens and he said he knows one that is very aggressive in treating it. I chose to join this group to 1 see if there is anyone else with PsA and MS and 2 if not chronicle my journey with it for anyone else that has to face this. As it seems that to have both has a very bad prognosis. They are trying to figure out why but people with PsA that also develop MS tend to get lesions in very dangerous places that MRIs do not detect, which further delays proper treatment. I decided that if that is the case I want to help others to know the signs, the process of dx and the course it takes so someone else isn't trying to get a dx 5 yrs after symptoms started. Hopefully that is not the case.
Whatever it is will have one heck of a fight cause I will fight like a wildcat! :-)
Thank you! I think the new doc will get me on the right track!
cayuse said:
No advice here, but just sending positive thoughts you get this sorted out. You will!
Oh, gosh - the memory lapses, yes! Numbness and muscle spasms in my face as well.
Jen - these symptoms are independent of flares, unless this has been one huge long, progressively worse flare where I only lose function/feeling/strength on one side of my body... well, mostly on one side, as my left side is declining much faster than my right. I take prednisone, and my PsA stuff gets more manageable, but there's no difference in my neuro issues. The neurollogists kept asking if it was sudden onset or gradual and didn't like my "gradual" answer, as a stroke would be so much easier to diagnose! LOL My rheumy is leaning toward MS, neuro is thinking it's not MS because of a lack of a certain reflex in my foot, but then again, EMG testing shows I have no nerve response in the bottom of my foot (zero - they thought their machine was broken), so would most likely not have a reflex as well.
Marie- AWESOME appointment! It sounds like you're definitely moving in the right direction and should have answers sooner rather than later. That's wonderful! You must be so relieved!!!
You know that crazy neuro told me memory lapses have nothing to with MS or neurology, that it was due to a sleep disorder. My sis from another miss about came unglued! She has a sibling (not mine) that has MS that did the functioning memory lapse and got arrested because he just walked out of a restaurant without paying for an o.j. Yes today made me feel much better. Although I had hoped that MS was in the review mirror with that unpleasant neuro! Do you know if there is anyone else on here with neurological symptoms?
nym said:
Oh, gosh - the memory lapses, yes! Numbness and muscle spasms in my face as well.
Jen - these symptoms are independent of flares, unless this has been one huge long, progressively worse flare where I only lose function/feeling/strength on one side of my body... well, mostly on one side, as my left side is declining much faster than my right. I take prednisone, and my PsA stuff gets more manageable, but there's no difference in my neuro issues. The neurollogists kept asking if it was sudden onset or gradual and didn't like my "gradual" answer, as a stroke would be so much easier to diagnose! LOL My rheumy is leaning toward MS, neuro is thinking it's not MS because of a lack of a certain reflex in my foot, but then again, EMG testing shows I have no nerve response in the bottom of my foot (zero - they thought their machine was broken), so would most likely not have a reflex as well.
Marie- AWESOME appointment! It sounds like you're definitely moving in the right direction and should have answers sooner rather than later. That's wonderful! You must be so relieved!!!
Marie, I have just been dx with MS (RRMs) and started on Copaxone. I was complaining for years. Was told I was over weight, was told it was fibromyalgia, etc. finally saw an MS specialist who ran tests and another MRI. Now have 6 lesions and spreading. Do not rest until you see someone. I also saw a plain ‘neurologist’ before who told me it was not MS and wouldn’t even test for it. Anyway now I have a great MS Dr and while not happy about Ms-I am happy it has a name and things I can do for it. Hang in there