Well: I got diagnosed about 5 years ago... - Osteoarthritis Ac...

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Well

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I got diagnosed about 5 years ago with OA. Well I guess that's what they (doctors) were thinking anyways. I got the physical part done first then after appointment they sent me to do the blood test. It was a new doctor that just transferred into that department. I waited in the room for about hour or so and she performed the test in about 20 minutes. Then she had to talk to the " doctor" about her findings. So I skillfully awaited my fate for another hour and a half or so. Almost walked out. She comes back in room tells me doctors says OA. I looked at her and said he never laid eyes on me so how would he know. I'm not a fan of someone not looking at me and making a diagnosis even withnsimeone else's eyes and notes. Everyone sees something different in patient appointment. What does anybody else thinking. I know I got an diagnosis what if it is something else?

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kohai profile image
kohaiOA Ambassador

Hi Sunlife,

I have to say, I loved how you put "I skillfully awaited" That amused me no end, purely because I couldn't have put the experiences of "long waits" better myself.

I think you'll understand what I say here, as from your wording and the way you've described your experience, you strike me as being both "no-ones fool" and having a relatively high IQ.

Back in '98 when I went to have my "hands" diagnosed, I was working for a multi million dollar company who had factories globally. They had to have doctors and nurses on staff as they'd been sued by staff for things like carpel tunnel so many times..

Needless to say I was being seen by several doctors, but what was weird was my appointment with the rheumatologist.

I said hyphenated it was my hands that were problematic, yet this specialist had me lay on a couch, bent my toes, asked me to sit in the chair by her desk then told me I have OA in my toes and knees!

When I asked "And what about my hands?"

(which hadn't even been examined) , she replied without even looking at me "Oh yes, those too".

Unfortunately back then, I didn't have the luxury of letting loose what I refer too as

"Voluntary Tourettes"

as their was only one rheumatologist within 100's of miles.

After she was replaced, I went back, only to be seen by an elderly rheumatologist, who slouched so much in his chair, I half expected him to slide off it. His only conclusion, with no examination was "you can't possibly have arthritis, you're not old enough!".

On seeing the patients prior to me going in, who were in there with him ages, it dawned on me that my appointment only lasted roughly 3 mins as I was not elderly and not young with a large chest!

I saw my doc, whom I did get very vocal with, and let him know just how disgusted I was.

My bad experiences with them is endless.

Luckily however, nowadays, OA can be detected, and the whole extent of it via an MRI.

From 1998 to 2018 I saw nothing but screwballs, even though during this period I actually worked within the nhs.

I was told by new doctors (after moving town) that not only did I have it in my hands, but during that period, it had spread. I now have it in every joint and all through my spine.

My advice is in two parts;

1. Don't ever be afraid to say what's on your mind if you doubt their diagnosis!

2. Don't give up! Keep on at whomever it takes to get the answers you need or they will try and fob you off quickly just to get through their daily patient lists.

Good luck, and please do update us when you get the proper results.

in reply tokohai

I am not sure when I will get back in to see anybody for this. Nobody's fool is right, high IQ prob not so much as it was irritation. The " you're not old enough" and " your not elderly and not young with a large chest" seems to be on the mark. Everything seems to be on a time limit with doctors except of course in my case was a female coming from gynecology department. Found that out later when I checked in her background. I'm sure that goes hand in hand with what I went in for. Sorry, just using humor not anger. Lol. I will definitely keep you posted when I get in. I will do a following on your posts.

in reply to

Diagnosed with OA a year+, ago. Mine was done by BMD(bone mass density) . Without getting deep 0.2 and fully osteoporosis, so officially have osteopenia ( blood test) low Calcium. Drs do make mistakes, on me as well as others. Being male & told I had breast cancer. Ok? No, a good radiologist suggested western blot test for Lyme disease. So in the time waiting for mammogram etc, damage done by Lyme. Add the 2 together, like all of you, understand & I feel I know your pain & frustration. Best of luck on your journey.

in reply to

Thank you

HeronNS profile image
HeronNS in reply to

Can you explain more? OA is osteoarthritis and diagnosed with the help of ordinary x-ray. Bone mass is diagnosed with a DXA scan, which I assume you had as you are discussing your bone density. No one remarked upon OA as an incidental finding when I had my DXA scan although I've known for many years I have arthritis.

Batty1 profile image
Batty1

Wow great doctor using the throw away diagnosis of osteoarthritis. I got that diagnosis 4 years ago after developing crippling pains after thyroidectomy and 2 Rheumys, 1 Orthopedic and 1 podiatrist all said I exercise too much and and I have osteoarthritis ..... fast forward to 2 years ago after being house bound and leaving my job of 7 years I saw a university Rheumy who specializes in psoriatic arthritis (Psoriasis for 45yrs) and she diagnosed me with psoriatic arthritis.

So yes the doctors could be wrong !

in reply toBatty1

I have had people tell me to see a doctor who specializes in one area such as rheumatology instead of in several different areas. The one I seem had specialized in rheumatology and gynecology. I think she just transferred like the month before I seen her. It was a frustrating appointment to say the least.

Batty1 profile image
Batty1 in reply to

It definitely is heart breaking when you see a doctor for a problem and they ignore your complaints and go with the osteoarthritis diagnosis.

What issues are you having exactly ? it’s possible to have osteoarthritis and another type of arthritis at the same time.

in reply toBatty1

When I get up in the morning it usually takes me awhile to get going. My feet ankles knees takes me awhile to get good mobility to walk. Shoulders elbows wrist hurt. My knuckles hurt alot. I ache all day long but I can tolerate it as long as I am moving around. Once I sit down and try to get back up its like I have to start all over like getting out if bed. If I sit to watch tv or read after work again it takes a little bit to get going again. If I stay active at nite moving around I can tolerate it too. Seems like whenever I have idle time I am back to square one. They said my bloodwork was fine so that was one of the factors they used to determine me. When I went to the doctors appt I was active and warmed up moving my body parts then. Even when I was at appt I was exercising the legs, arms, fingers to keep from stiffening up. Never ending process to keep moving.

Batty1 profile image
Batty1 in reply to

Well you shouldn’t have to be crippled when you go to see the doctor, thats just wrong and not reasonable.

What you described is exactly what I go through with psoriatic arthritis.

When you bend your knees do you hear a grinding noise ?

Has the Rheumy or GP you seen done any X-rays or MRI of the affected joints?

What blood work did you have done that ruled out Rheumatoid or inflammatory arthritis?

Do you have any other health problems that you take meds for, like high cholesterol? Statins can wreak havoc on joints (learnt this the hard way) but of course my GP was unsympathetic when I told her Im slowly returning to normal after 4 years you unraveled me in 1 months it absolutely left me unable to walk again.

in reply toBatty1

If you can understand these: vitamin d, TSH, SSA, SSB, SM ABY, RNP ABY, JO 1 ABY, SCL 70 ABY, DNA DOUBLE STRAND. Not sure what any of This means. They never explained it. This is what I can see they did for blood. Within the normal rate. I take some meds but don't recognize as stations. I'm not much up to date on meds. The note from the doc was if bloodwork was off they would schedule me back in. I have had alot of injuries since then. I'll look up my meds later when I get off work.

in reply to

I will not ask what meds you take. I do know some I take, instead of helping, make things worse. Last thought, have you thought of any genetic testing. I did at Dr advice-some I know I cannot take. I am not Dr. I understand some of your blood work, your Dr needs to explain results. Those Drs & 15 minute visits, and way you were treated does disturb me-I wish you well & I know that does not help much. You have to be your own advocate it seems no matter where we live

Batty1 profile image
Batty1 in reply to

Not stations (statins) cholesterol lowering drugs.

If I were you I go get copies of my blood test.

in reply toBatty1

I can access the blood work online for the levels they are at. Then it shows where levels should be at. Yeah kind of wanting new provider. I know the two main ones can access each other's notes. Like dermatology can look at the other clinic/hospital notes from my appts there. Kind of frustrating because it seems they have a cheat sheet to go by and diagnose the same thing. The littler clinics hire the unknowns and I have bad luck with them except for the provider I had last five years. She was at a small clinic and was a gem for me. That's who referred me to check out my probs. But she was a NP and didn't have a specialty. She moved on to a private company and I am back to square one. She and I talk online and she asks how I am doing. Good lady.

Batty1 profile image
Batty1 in reply to

Why not make an appointment with the Rheumy and ask them to go over each blood test and explain that this pain isn’t getting any better only worse and it’s affecting my life.

Just so you know being hypo can also cause joint pains, I know this from experience .

Testing only TSH is not enough you need FT3, FT4, T3 antibodies to determine if you have Hashimotos... pop over to the thyroid section lots of good info and worth checking into.

If you’re in enough pain and all the time its not NOTHING it’s definitely SOMETHING!

in reply toBatty1

Some very good suggestions. Drs miss things, reason for second even third opinion. Yes, they nod their heads, and your time is up. Wishing you less pain, does not help. At least you are aware all meds can have adverse reactions. Try...

in reply to

I hope you find another Dr/specialist. I really do feel your pain as I am pretty close in inability and constant pain. Keep moving when possible. I also have to sit/lie down. You are not alone, but that does not help your pain.

HeronNS profile image
HeronNS in reply to

Has anyone checked you for polymyalgia rheumatica (polymyalgia=pain all over)? Usually found in people over 50 but not unheard of at a younger age. One can have normal inflammation markers, up to 20% of PMR patients do, which can delay the diagnosis. The two common tests used for this (either or both) are ESR and CRP, but as I say even these may not be definitive. Mine were considered "normal for my age" by a poorly informed physician so I was in much the same sort of pain you describe for a year or more before a new doctor diagnosed me almost in minutes. A few days of 15 mg prednisone working its magic confirmed the diagnosis, and after that it was a lengthy process of very slowly reducing the dose to the lowest level which still controls the symptoms (in my case 2 mg). Now five years later. I do have osteoarthritis as well, confirmed by x-ray.

I'm soaking up everything you lovely people are saying. I think I am understanding what is normal and what isn't. I thot maybe I was the one who was wrong because they have the testing, the blood test that they want to see to tell me what they think it is. Thank you all so much. Always would love to hear more from you if you have anything else.

HeronNS profile image
HeronNS in reply to

medlineplus.gov/lab-tests/e...

medlineplus.gov/lab-tests/c...

Both measure inflammation.

in reply to

I do not know if they did. I post whatever they did earlier in this post. I am 57 so yes I would fall under the 50+ catergory.

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