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Living with Psoriatic Arthritis (PsA)

Frustrated and a bit depressed

#1

Hey y’all. I’m sorry I haven’t been a good member of this forum. I don’t know how to begin to explain. I don’t even remember what I have updated on. My memory is worse. Having lightheadedness and dizzy spells pretty often, like today.
OK I’ll start with the neurologist appointment. I have nerve damage at the C7 nerve root. I’ve got an appointment with an orthopedic surgeon on the 20th. My last appointment with the rheumatologist which was after seeing the neurologist and getting the results of the MRI of my neck, did not go well. I saw the lackey not the primary doctor again. I nor my husband like him at all! But despite what THE doctor has said and noted in my history and visits summaries, he thinks doesn’t think I have ANY autoimmune disease or rheumatic diseases. Yeah! I need a diagnosis and told him this. So he says osteoarthritis is what has caused ALL my problems. Everything! So I told him I don’t feel like anyone is listening to me. I know there is more going on in my body! I’ve never had any problems or accidents to cause osteoarthritis in my neck! . I got very upset with him. My husband backed me up on most everything but kept trying to hush me so the stupid ignorant jerk could just repeat himself. Ugg!!! Yes I’ve decided I’m going to find another rheumatologist.
Ok now most recently, I emailed both my rheumatologist and my neurologist last Friday. No response from the rheumatologist office at all!! Monday morning my neurologist called to schedule an appointment for Tues. Yes the next day!! I’m having all kinds of symptoms and pain that I wasn’t sure is caused by the problems in my neck and back. Evidently the neurologist doesn’t think they are and has ordered a MRI of my brain. It’s scheduled for the 22nd.

I’m sorry for keeping going on SO long. I think I’ve got to lay down now. Got some vertigo going on now. Ugh!!

Praying for each of you!! HUgs!

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#2

Good morning all! It’s been a hectic few days. First my appointment with the orthopedic surgeon Wednesday went well. Dr Hellman is very nice, understanding and sympathetic. He developed a plan of action for me. There’s 4 steps but I don’t have to take all four. First trying a high dosage round of prednisone. 5 days of 3- 20mg tabs. Then 5 days of 2 tabs, etc. That’s the most prednisone I’ve ever been prescribed. I’m the past it’s been no more than 30mg total for a few days then decreased by 5 mg until only 5mg on the last day. Is it normal to have a cough with this high dose?? And headaches??
The next step if I want to take it is physical therapy. He gave me a referral for any place I wish to go. I’m going to wait and see how much the prednisone helps before you start making arrangements for PT. The third step is an epidural shot of cortisone in my neck. He doesn’t do those but already sent the referral to the place to get it set up. He said it could take as long as 6 weeks for an appointment. If at that time I don’t need it, I can reschedule or just cancel until the do. If all that doesn’t fix the problem, he’s confident that he can preform surgery, which is the last step, and correct the problem.
He showed us on the MRI what is actually causing the problem. He explained it much better than the neurologist too. I have at least 3 herniated discs and one bulging disc. All in my cervical spine.
I got the MRI of my brain done yesterday. It went well also. I won’t k know the results for at least a week. If I haven’t heard from my neurologist by next Friday, I’ll call them. But to see him I’ll have to pay some on my bill. Ugh sucks but true.
Oh we mentioned to Dr Hellman about wanting to find another rheumatologist. He understood why but the only ones he knew of are leaving the area soon.

I hope and pray y’all are doing well and pain free as can be.
Take care and be safe. God bless.

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#3

I hope you get some answers about your symptoms soon! Wishing you the best.

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#4

Thank you! I’m praying for some.

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#5

Hi AngieB.

On the face of it I can see why Dr Hellman impresses you.

I’ll bite the bullet and say that it is not completely beyond the bounds of possibility that your problems are caused by OA … I say this very cautiously, but I think it is as well to keep an open mind. And the only thing that would make me keep an open mind is that I assume that severe OA in spine and neck might cause a whole range of symptoms.

However … I know what it’s like when it’s almost impossible to cover everything, every symptom, every doubt, in a few posts online. And you are the person that knows the whole story. I too would want to find an excellent rheumatologist whose opinion I could trust. None of us with a PsA dx should be at all casual about relinquishing the dx and the meds on the say so of a doctor we’re not sure of or who hasn’t explained their thinking very convincingly.

How far are you prepared to travel? Could you indicate the area you’re looking in? If necessary set up a new post explicitly seeking rheumy recommendations in that area.

It sounds encouraging that Dr Hellman thinks there’s a chance that matters can be improved without surgery. Did he have anything to say about the OA factor? I hope you get reassuring results from your MRI, too.

Travel hopefully Angie. You’ll get a clearer picture eventually but I’m just sorry you are dealing with such uncertainty. Don’t forget to congratulate yourself on every step forward.

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#6

Hey @Sybil. Thank you for your reply.
I’m not certain it’s not OA in my neck and back but I do feel like there’s more going on. I’ve been so exhausted lately. Can’t sleep for long periods because I wake up hurting in so many places but not all the same each day. Some days are better than others but the bad days are awful! Brain fog and lightheadedness dizzy spells, etc ugh. Sorry lol wasn’t intending to list so much. But sadly that’s not even half of the problems I’m having.

I live in South Georgia, USA. The other rheumatologist was an hour and a half away. Driving to and from appointments was exhausting and painful. I’m going to check on our insurance website for in network doctors. It’ll have their locations and how far away they are too. I’ve gotten some recommendations from fb friends that are local. But just got to check with insurance for coverage.

Dr Hellman didn’t mention OA at all actually. He listened to what we had to say about the incompetent assist doc and agreed that a second opinion at least was needed.

From what the neurologist said, he’s looking for signs of MS or scars and such on the MRI of my brain. He said face numbness and tingling would only come from the brain. But it could be psychological, like depression or even hyperventilating. Lol while I admit I’m having bouts of depression, it’s not that bad. I’m not staying in bed all day. I’m not even crying much anymore actually either. I’m more frustrated with no definite diagnosis than anything.
Thank you. I’m trying to be more active as much as I can on good days. Like the other day, first day of prednisone. I walked SO much! It felt GREAT! But even before I got home I was exhausted! Lol my legs felt like lead! My arms hurt. Head hurt. We were in bed before 10pm which is extremely early for us. My husband works nights so we’re used to being up til after midnight.
Needless to say I’m resting today since my husband is at work. Lol I’m not even going to cook if I can find anything, and I mean anything that doesn’t have to be before I eat it. Lol

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#7

Morning Angie,

Or at least it’s morning here in the UK and a bright sunny one.

So you do have severe mechanical problems in your neck all of which can cause shedloads of pain, tingling, fatigue etc. Your neck is a pinchpoint nerve centre too. And you have a plan to plod through to fix that. That’s is such good news really.

And you have an idiot of a rheumy’s office who basically either makes you see the lackey and/or fails to return your calls. And simply isn’t dealing with you really are they? So you need to find the best rheumy you can to get some sort of definitive opinion. You may however find that given the neck issues their ability to as being as definitive as you’d like might be hampered. But please go and find one you can at least talk to and who talks back to you sensibly too. xxx

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