Anyone with similar symptoms?

[maddie]

Hi everyone

I’m a little scared and confused by my symptoms. It seems the doctors are too. Here is my story:-

Last March I started off with the smallest joint in my middle finger that ached. The inside of both elbows and the inside of my left ankle joint also ached too, with my left ankle sometimes feeling like it was burning.

In June I started to feel unwell. My glands in my neck had a strange prickly sensation and I felt dizzy with a temperature. My lips went so dry they cracked. At the same time both hands started tingling and over the next few weeks I felt this tingling sensation move to my elbows, wrists and knees. My glands, temperature and dry lips returned to normal after three weeks, however, over time the tingling in my joints has turned into more aches, stiffness and some pain, especially in the morning until I move about. It seems to be getting worse very gradually.

All blood tests including CRP and ESR are normal. I have never had any swelling. A few months ago I noticed some of my joints make clicking noises.

I thought I may have a version of RA or some kind of sero negative arthritis? The doctors don’t know either. Three months before this all started I had a UTI. The doctors said possibly reactive arthritis but know they don’t know. They say I can’t have RA or even sero negative arthritis because my CRP and ESR are normal.

I’m seeing an AP doc and I’m on Mino, and I have been since December. No improvements yet but I know it’s early.

Can anyone relate? It’s the no swelling that beats me, and the normal bloods.

Thanks for reading

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[lynnie_sydney]

When I first experienced symptoms in the late 1990’s, all my blood work was normal, including RF. I experienced very little swelling as well and attacks were intermittent Hence my eventual dx of Palindromic RA). CRP and ESR were also normal. It was about 3 years after symptoms began that my RF began to rise, at first just weakly positive then up to around 580. Symptoms can precede bloodwork and the reverse can also happen.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[maddie]

Thanks Lynnie 🙂

I guess I’m just worried I have some weird ailment that nobody else in the world has LOL.

I’m sure you are right, my bloodwork may catch up with me. Hopefully the AP will stop that!

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Pinkmoth]

Maddie,
I have normal bloodwork and all the weird array of symptoms you have and others. It throws doctors for a loop and i still cant get a diagnosis, but it looks like the most likely one I’ll be able to get from a doctor im currently working with is “RA” (since I have almost no apparent skin involvement anymore after being on AP since 2017).

I think some doctors will also classify this sort of thing as Mixed Connective Tissue Disease. I wouldnt be surprised if that was what was going on with you. But there’s so much overlap with these rheumatic diseases that it doesn’t seem to matter THAT much what label is stuck on it. AP seems to work for it all.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[jaxtee]

Hi Maddie,

I have reactive arthritis or ankylosing spondylitis (my rheum doc says they are the same thing but you won’t find a lot of them that will). I’m just wondering if they have checked to see if you are HLA-B27 positive? It’s a simple blood test. And while not necessarily a guarantee, if you are positive there is a good chance you might fall into the AS/ReA category somehow.

My symptoms aren’t exactly as yours, but my symptoms aren’t even the same as my own were 10 years ago! But I did have a lot of weird joint pain. UTIs are also something I am plagued with and some docs recognize that as being part and parcel of AS/ReA.

My sed rate never goes up until my infection(s) are full blown. Even at that, my recent sed rate was 30 and the highest I ever had was 50. When it was 50 was when they discovered my entire bladder was covered in infection. It took years for that to show on a urinalysis, typically my UTIs do not show up on urinalysis. Normally my sed rate hovers between 5-15.

Last test he said my CRP was “fine”. I forgot to ask what “fine” was but I do know it was 10 on one occasion and he said that was high.

[maddie]

Thanks Pinkmoth. That’s interesting that you don’t have a diagnosis yet either but as you say these things can overlap. I agree the diagnosis doesn’t matter as long as AP is working.

Hi Jaxtee. Thanks for replying. I was thinking the other day it might be wise to get that blood test done, I might ask for it when I get my rheumatologist appointment.

Best wishes

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Spiffy1]

I can assure the doctors that you can have many problems with normal SED rate and CRP. When I was at my worst with multiple symptoms both of mine were normal. Some people’s immune systems don’t seem to manifest inflammation this way, but it doesn’t mean there is no inflammation present. I feel there are other markers not identified yet somehow. There is still so much we don’t know. In all my bloodwork the only thing that shows up is low positive RA factor and sometimes barely positive ANA. My ANA is 1:40 sometimes and this did not happen until I started AP therapy. But my doctor dismissed it as non threatening. It does change patterns too. You really have to go more by how you feel, but without the normal bloodwork red flags it is sometimes harder to get a doctor to take you seriously. You may get told that you are just anxious or getting older or it is all in your head. So if you have found someone who will take you seriously you have found a lot.

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[maddie]

Thanks, Spiffy.

It is interesting to find out other people’s experiences. I know I have inflammation in my joints, you just can’t see it or test for it. My local doctors have said to me over and over, that I don’t have RA. I don’t really know what else it could be though apart from a similar autoimmune disease (like MCTD, as Pinkmoth suggested).

As you say, at least I am being referred to a rheumatologist now, even though it is nine months after my first symptoms. Perhaps my problem will show up on the x-rays rather than in the blood tests.

Best wishes

Maddie 🙂

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Simba1992]

Hello Maddie,
Sounds very much like the symptoms I had in the beginning of my RA. The the inflammatory markers are not very dependable.Did you have your anti CCP done? This is the best marker for RA together with synovitis that is best seen in MRI and US. Early RA seldom shows up in X-rays.Hope your Mino kicks in soon. All the best.

[maddie]

Hi Simba1992

Thanks for responding 🙂

Yes, I had the anti-ccp test done as well but that was negative. I hope the AP kicks in soon as well.

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Simba1992]

Hello again,perhaps it would be an idea to check inflammation with at least ultra sound.This way you could make sure if you have any level of inflamation.It does happen that anti-CCP is negative in RA but if you have very low level inflammation, subclinical, and negative CCP it usually means that your RA is not erosive.

[Pinkmoth]

Yeah an ultrasound is a great idea. By the time I finally got in with a rheumatologist who would run one on me, I was already on AP for 1.5 years. And results showed no sign of active inflammation!
Its still very very early for you, so I’m confident you will get there at some point as well!

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Uptowngirl]

I have reactive arthritis from strep throat. My ESR and CRP have fluctuated during the time when I have had this. You may want to ask to be tested again. I have very high ASO numbers (strep antibodies) and they have remained high for an extended period even though I have not had an actual strep infection for 2 years. ASO is not commonly tested. My main symptom is bilateral ankle pain, very severe. My ankles do not appear swollen. I am now taking Amoxicillin and the ASO numbers are improving gradually. Hang in there. It’s not easy.

Reactive Arthritis/ Adult Rheumatic Fever due to strep throat. History of probable Lyme disease. Current medication: Amoxicillin and supplements. Daughter of the late Richie (scleroderma and AP patient for 19 years).

[maddie]

Thanks again guys :-). I’ll take on board everything you have said.

Still no sign of a rheumatologist appointment but because I’m on AP and sticking to anti inflammatory diet, I’m in no hurry.

Im doing the best I can for myself in the meantime.

Best wishes

Maddie

No official diagnosis yet but probably some type sero-negative, symmetrical inflammatory arthritis.
Started AP treatment December 2018. 200mg Minocin MR Mon/Wed/Fri.

[Spiffy1]

Please give us an update when you can, Maddie. Our thoughts are with you!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

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