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Old 06-19-2015, 10:14 AM #1
Starznight Starznight is offline
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It could have to do with the albumin and igg levels. Even if they're both with in the normal if the ratio is off then it could mean infection. Sort of like how you can have an increased risk of a heart attack even if your cholesterol levels are all within the 'healthy' mark. If your ratio of good to 'bad' cholesterol is off, is too far tipped towards bad, it's just as bad as if you had high cholesterol.
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Old 06-19-2015, 11:15 AM #2
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It could have to do with the albumin and igg levels. Even if they're both with in the normal if the ratio is off then it could mean infection. Sort of like how you can have an increased risk of a heart attack even if your cholesterol levels are all within the 'healthy' mark. If your ratio of good to 'bad' cholesterol is off, is too far tipped towards bad, it's just as bad as if you had high cholesterol.
Thanks very much for this explanation. Yes this makes sense now you mention these readings. More recently my liver ALT has gone up quite high and so has my GammaGT. I had assumed this was due to the steroid but I had pancreatitis as a drug reaction last month and before that, pneumonia, so it's been a lousy year. I am very freaked out by the increase in parasthesia/ neuropathy in my legs and arms and the dizziness as I drop steroid doses.

My rheumatologist has just emailed a brief update to say that he and my neurologist have spoken about me and will be referring me to a colleague specialising in Vasculitis. Vasculitis is a possibility but wouldn't explain the dizziness and numb tingle in my face I feel.
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Old 06-20-2015, 12:28 AM #3
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These are just my thoughts. Obviously, I'm not a doctor so keep that in mind.

When did the numbness and tingling start? Did it start right after you or during the time you were on antibiotics? If so, what antibiotic were you on?

Vasculitis can cause some dizziness, numbness, tingling, pain, etc. Hopefully, the specialist can help with that. There are other autoimmune disease that can cause neurological symptoms as well. In some people, RA can have neurological symptoms.

Lesions may or may not show up on MRI. Some lesions are too small to detect or are there but not in that particular slice on the MRI. MRIs are 1/4" slices and a lesion could certainly be hanging out in between the slices. But, it will eventually show up in another MRI. As my neuro said, damage is still taking place behind the scenes and may not show up for a while. Hence the reason he wants all his MS patients on some sort of DMD.

Some medications that are used for RA can also be used for MS. My neuro listed them off for me but I can't remember what they were other than methotrexate and Rituxan (which is a biologic). It's just something to keep in mind as there are crossover medications that you can take.

Your blood work looks normal but as Starz mentioned, the ratio of things can be out of sync and be causing a problem.

Keep in mind, some diseases take a while to be diagnosed. The answer will eventually come. Just be patient, keep a symptom log with the date, how long the symptom lasted, did anything bring it on and did anything relieve it, etc. It will help keep you on track and you may see a pattern emerge.

Good luck and feel free to ask us any questions while you are going through this.
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Old 06-20-2015, 01:09 AM #4
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Originally Posted by tkrik View Post
These are just my thoughts. Obviously, I'm not a doctor so keep that in mind.

When did the numbness and tingling start? Did it start right after you or during the time you were on antibiotics? If so, what antibiotic were you on?

Vasculitis can cause some dizziness, numbness, tingling, pain, etc. Hopefully, the specialist can help with that. There are other autoimmune disease that can cause neurological symptoms as well. In some people, RA can have neurological symptoms.

Lesions may or may not show up on MRI. Some lesions are too small to detect or are there but not in that particular slice on the MRI. MRIs are 1/4" slices and a lesion could certainly be hanging out in between the slices. But, it will eventually show up in another MRI. As my neuro said, damage is still taking place behind the scenes and may not show up for a while. Hence the reason he wants all his MS patients on some sort of DMD.

Some medications that are used for RA can also be used for MS. My neuro listed them off for me but I can't remember what they were other than methotrexate and Rituxan (which is a biologic). It's just something to keep in mind as there are crossover medications that you can take.

Your blood work looks normal but as Starz mentioned, the ratio of things can be out of sync and be causing a problem.

Keep in mind, some diseases take a while to be diagnosed. The answer will eventually come. Just be patient, keep a symptom log with the date, how long the symptom lasted, did anything bring it on and did anything relieve it, etc. It will help keep you on track and you may see a pattern emerge.

Good luck and feel free to ask us any questions while you are going through this.
Thanks very much for this response. I understand that none of us are here as medically trained people but it's extremely helpful to learn more from those who's journeys overlap and who have far more knowledge and experience of a particular disease than I do.

I suspect the results I've put up here were through before the ones my neurologist referred to as there are some blanks on the list.

The thing that my friend and I noticed during my recent VC appointment with the neurologist was that he changed his approach towards me dramatically during the consultation. He started out on a default position - listing tests he ran in January and explaining how they showed nothing amiss. We spoke about Cymbalta side effects and how I'd come to try Imuran recently and the ensuing pancreatitis.

Then he got the young doctor to do a rudimentary test on my eye responses and feet and hands and this is wheh he seemed to suddenly change his previously dismissive tune. He said that there was one result from January which had flagged up positive for autoimmunity or infection. I explained that my rheumatologist had agreed that my small fiber neuropathy was probably part of my diffuse RA inflammation. But that until my RA comes back as synovitis I will not meet the nhs criteria for biologic drugs - hence starting a fourth disease modifying antirheumatic drug - Imuran. Once I explained this he immediately said he would speak to my rheumatologist and my friend and I got the impression that something had shifted for him and he then mentioned the Vasculitis professor.

It seems they are all speaking to each other about me now so I guess this is progress. I'm not saying I was misdiagnosed with RA but I think methotrexate chased it off. But the neurological symptoms actually affected me prior to the start of the RA and I have, as you suggest, made a record of them. They went away once I got onto injectable methotrexate and came winging back within weeks of stopping two years later. I don't think this can be a coincidence but unfortunately my drug reactions have all been too severe to put up with (spewing both ends for two days each week after the methotrexate).

I think the RA diagnosis has distracted everyone from the neuro symptoms because they crossed over so much initially. No one has checked out the cause of the dizziness yet. The facial pain, tingling and numbness was dismissed by a maxillofacial surgeon as TMD caused probably by bruxism because I'm in so much pain elsewhere. I agree the mouth, jaw and nose issues aren't arthritic but I don't think it's all down to bruxism and TMJ neuralgia either. Numbness and tingling around mouth and face are rare with TMJ.

Sorry I'm waffling here. I don't think I do have MS thankfully - but nor have I entirely ruled it out and certainly don't think the neuro issues are all part of my RA as previously supposed. I probably have a mixed connective tissue thing going on but the neuropathy and dizziness are far worse than the joint pain is to me.
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Old 06-20-2015, 07:04 AM #5
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Out of curiosity, has either doctor brought up Lupus (SLE) as a possibility? It can mimic RA to an extent. But can present neurological symptoms too. And is a very close 'family member' of autoimmune to RA.

I'm in my own hunt for an autoimmune disorder after some blood work, I should get the word (fingers crossed) on what is maybe when I get to see the rhuemy. But RA and Lupus were both ruled out for my by the results of the same test. It's called an anti-DNA, that goes along with an ANA.

ANA checks the levels of inflammation, and the anti-DNA checks for specific antibodies consistent with lupus as well as RA and a few other autoimmune disorders.

It's not unlikely to be given RA as an initial dx that later changes to lupus, it's not that the disease changed any but you may advance to a point where they can see the symptoms treading towards on over the other, that can't always be pulled straight from the blood tests.
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Old 06-25-2015, 02:06 AM #6
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Quote:
Originally Posted by Starznight View Post
Out of curiosity, has either doctor brought up Lupus (SLE) as a possibility? It can mimic RA to an extent. But can present neurological symptoms too. And is a very close 'family member' of autoimmune to RA.

I'm in my own hunt for an autoimmune disorder after some blood work, I should get the word (fingers crossed) on what is maybe when I get to see the rhuemy. But RA and Lupus were both ruled out for my by the results of the same test. It's called an anti-DNA, that goes along with an ANA.

ANA checks the levels of inflammation, and the anti-DNA checks for specific antibodies consistent with lupus as well as RA and a few other autoimmune disorders.

It's not unlikely to be given RA as an initial dx that later changes to lupus, it's not that the disease changed any but you may advance to a point where they can see the symptoms treading towards on over the other, that can't always be pulled straight from the blood tests.
Thanks. I saw a connective tissue professor last year and he's being re-consulted now this week. Last year his view was that lupus was very unlikely because I am post menopausal (52 with early meno) and have no kidney or lung involvement - which he felt I would if I had SLE. After the child bearing years it tends to slow down or lessen and mine is still progressing. My ANA and other autoantibodies are all either negative or equivocal (RF). He confirmed that I have autoimmunity (inflammation markers and thyroid antibodies) and that I did certainly have RA because I showed him photos of my hands and fingers at diagnosis - he said these were text book classic and could be nothing else. So it's whether I have additional or overlap.

The specialist dentist confirmed that the numbness and tingle in my face is same as rest - small fiber sensory parasthesia rather than CNS or Trigeminal (TMJ) or anything oral. He explained that he's only seen this type of parasthesia in people with tumours or MS - but my brain only showed small vessel disease in line with my age.

So he will write to my neurologist suggesting that my neuro now looks for lesions in the nerves at the back of my head as well as ganglions as this could also account for the dizziness. I'm not sure how these investigations would be done - MRI? Biopsy? I managed to avoid having a temporal arterial biopsy recently so they could rule out GCA which I know I didn't have as I really don't have much pain or headaches - just dizziness and numbing tingle and this tightness around my teeth and lips.

As I'm sure you know about 30% of people with RA have negative Rheumatoid Factor and 40% are negative for anti CCP so these tests are important diagnostic clues but don't rule it out if negative. It is the symptoms that should count most always. Synovial swelling is unique to RA with hot "boggy" synovial joints. I have three friends with sero negative Lupus but some doctors refuse to acknowledge seronegative Lupus. I think it applies to around 20% and 10% for Scleroderma. I guess once these diseases start to attack the joints, eyes, internal organs etc then it doesn't matter what your blood says but I'm sure most of us don't want to wait to be treated too late.
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Old 06-24-2015, 06:11 PM #7
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I have clean MRIs and I have MS.
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Old 06-25-2015, 02:10 AM #8
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I have clean MRIs and I have MS.
Thanks for telling me. How was your MS diagnosed?
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Old 07-19-2015, 06:35 PM #9
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I have a brain full of lesions and no real symptoms. Last MRI showed one small lesion. I had a MRI for a different reason. My neuro sent me to Boston for a consult. He said that I probably had an episode about 20 years ago.
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