The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Progressive Symptoms Very Concerned

Discussion in 'General ME/CFS Discussion' started by David_101, Dec 7, 2018.

  1. David_101


    I need help at this point. My symptoms have been stacking since I've joined this site in July-August. I had a severe cold in July and after it went away, my symptoms have stacked to unbearable levels.

    I've been formally diagnosed with small fiber neuropathy and sudomotor dysfunction. Believed to be mediated by my cold somehow.

    My ANA is 1:160 nucleolar and homogeneous pattern.

    Retested and down to 1:40 around 2 months ago.

    Higher anti cardiolipins and IgD.

    However, I dont know if small fibers are the whole picture and we dont have a clear picture on the autoimmune stuff. Nonetheless, I'm going for IVIG next week:

    1) I've been getting a few issues with my swallowing area tightening and breathing. My breath would feel like I'm over breathing and swallowing air for no reason.

    2) My hands and feet are getting progressively red and cold. This is near constantly cold. Recently it's been feeling numb/stinging and a bit itchy. Wondering if this is Raynauld's and if this is something IVIG can fix as I'm going for treatment next week?

    3) My rectum is always open. It has not stopped and sitting down and laying down is an issue. It is something I feel 24/7 forover 3 months now and is killing my quality of life. I do have some linger gi issues like faster digestion urge to go after I eat, and watery trail on tissues. However, stool is generally solid but has a trail. Been told by @Learner1 some great tests for gi issues but doctors wouldn't give those to me. Also having bladder issues now where I leak urine after I void.

    I have other issues but I'd rather not bog this down. If anybody has suggestions, can maybe think of a cause please by all means let me know.

    I'm going for IVIG next week and hoping this will go away eventually or improve..
    Gingergrrl likes this.
  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Thigs I would consider:

    1) Cardiolipin raised in organic ME, CFS is quite common on here, but not related to CDC criteria CFS diagnosis, only at a research level. BUT, generally, these are low level positive cardiolipin antibody results CFS patients discover (post diagnosis), not high enough for a disease related diagnosis like Lupus etc, hence they are positive low level but in medicine treated as negative. How high was your cardiolipin antibody and dud you re-test?. Also did you test randomly or during a flare up of inflammatory pain, exhaustion etc?

    2) Breathing dysfunction is common in CFS, ME, dysautonomia and many other causes not just anxiety. So you could be feeling out of breath, breathing in too much resulting in burping etc, due to G.I issues or it might be from neuro, circulatory or inflammation, allergy , metabolic, etc. The simplest thing to do whilst you're waiting for a better diagnosis is to use a decent quality oxygen saturation monitor on your finger. If the level shows 100% then you're over breathing and it's not perceptual but real. Then you'd have to tell your doctor and rule out possible causes for why this happens. For example, nearly all doctors would say anxiety, but other causes exist and the most likely culprit would be dysautonomia.

    3) The red hand sign isn't a symptom of CFS. Episodic itching can be in some though with dysautonomia or ME. If it's getting worse take photos to show a doctor to aid a diagnosis, especially if you're indoors and the hand issues aren't temperature related.

    4) An 'open rectum' means what? Fecal incontinence? Your rectal tone can be checked with a sigmoidoscopy. Easy test, doesn't require any anaesthetic or hospital stay, just a few minutes in a hospital outpatient department. If you have dysautonomia, neuropathy, your anal cushions can become weak, causing issues. Again, these aren't signs of CFS.

    5) The raised ANA was probably viral or episodic autoimmune flare up. Doctors usually wait for multiple raised events before considering a firm diagnosis and possible treatment when patients have a raised ANA with pattern changes. Have you had a single raised ANA blood test, or multiple raised results?

    6) If you feel worse and the result is now normal, why are you being prescribed IVgG?
    f you want it, thats your choice as an adult. I would check was it the physician's idea oe yours? Before starting, check the doctor's reasons for prescribing as IVgG comes from other people's blood. I wouldn't touch it unless the symptoms are currently disabling and you understand the risk of the procedure, namely allergic reaction and the extremely low but still present danger of it infecting you with something worse.

    7) in my view, your symptoms don't sound CFS related, but rather you've got a condition that involves CF, that someone rightly or wrongly has told you is or was 'CFS'. If you have doctor diagnosed dysautonomia, then you exceed the criteria for CDC CFS and in my view should go down that route instead of CFS.

    For sure, you can have BOTH, but what you describe doesn't sound like CFS at all, or progressive CFS either. In a way, this is good news.

    8) I'd double check the reasons for having IVgG, make sure who is prescribing it is an expert and the tests you have validate it, and then stick with this treatment path if other doctors agree. Because we don't know your diagnostic history we have no idea what tests you've had, e.g. for autonomic or neuropathy diagnosis but in your situation if these tests haven't been done first, (could expand or alter your current diagnosis) I'd do that before having any form of immune therapy as you don't want to make yourself worse, and (ironically) end up with severe CFS in the process of being confused which way to turn.

    Hope that helps a bit, good luck and take care of yourself.
    taniaaust1 likes this.
  3. David_101


    Let me clarify. I don't think I have CFS and I haven't been diagnosed for it. Instead, my diagnosis so far has been Small Fiber Neuropathy and sudomotor dysfunction "believed" to manifest as Pure Autonomic Failure.

    I have done a table tilt (which didn't show abnormalities) but other tests and skin biopsy has confirmed the SFN.

    My neurologist is a specialist at Brigham that deals specifically with dysautonomia.

    Right now, it's basically whether it's just the SFN or does it include other fibers as well?

    Also, what cause has led from my metapneumovirus I had in July that has kickstarted the SFN?

    My autoimmune stuff has been unrevealing except for cardiolipin:

    - Igm is 1 and IGG is 27 tested about 3 months after my cold
    - Igd was high as welp
    - My ANA was raised to 1:160 about 8-9 weeks after my cold resolved. Retested again and lowered to 1:40 Nucleolar

    For my rectum it basically feels like my sphincter area is pushing down, especially when I sit and lay down. Some slight relief when I lay on my belly or stand up, though I feel it. Had a rectal exam and it feels like pressure. When I put my finger in the area I can feel my muscle contract against it.

    Lately, I have post urine drip. Especially when I walk around or sit down.

    Other symptoms:

    - my blood pressure being all over the place. From 130, to 160, 190 and unregulated heart rate that goes all over the place. Have PVC, tachycardia, and SVT.

    - Dry eyes and mouth episode for 7 weeks that has gone into remission luckily.

    - Breathing as I mentioned and shortness of breath is an issue that hasn't gone away.

    - swallowing area is now an issue with tight sensation.

    - I have ongoing burning from neck area and upper back that I take gabapentin for. This is temperature related, and my body and I cant regulate my temp. I would cycle through goosebumps and my body doesnt respond well to cold as it can sweat and have goose bumps with cold feet all at once.

    I have lightheadedness, and need help in the shower as I feel it then.

    Part of this I dont know if it is related to my meds. Been on Klonopin for 3 weeks in early Aug and it has led to fragmented sleep I believe when I quit cold Turkey. Also had some heart palpitations and increase heart rate for 2 weeks post klonopin withdrawal that continued to now?

    Currently on ivabradine to control these symptoms.

    Can you elaborate on IVIG?

    Right now, I'm practically debilitated. Even sitting down I feel like my breathing and upper swallow area is tight. I'm in constant pain, and discomfort from rectum. Heart is an issue when I over do it can lead to tachicardia and svt.
    Last edited: Dec 7, 2018
  4. Gingergrrl

    Gingergrrl Senior Member

    @David_101 Your story reminds me of mine in the sense that you are (currently) profoundly disabled by a variety of symptoms but the exact diagnosis is unclear (and doesn't appear to be ME/CFS although no one knows with 100% certainty until there is a bio-marker).

    My ANA was also 1:160 but it was speckled pattern. I do not know what it is now but hope to re-test it in a couple weeks.

    What other autoantibodies have you been tested for? Have you done any of the Mayo Panels? From what you describe, I think the two most useful would be either DYS1 (autoimmune dysautonomia panel) or PAVAL (paraneoplastic autoantibodies panel). They are very similar and I would choose the one that is the best fit. You do not have to go to Mayo and your doctor can order the blood draw at various labs (including Quest) and it can be sent to Mayo with the proper coding.

    I did two years of IVIG from July 2016 to July 2018 in case I can be of any help. Will you be doing high dose IVIG for autoimmunity?

    I never had any issues with swallowing but shortness of breath and breathing weakness was my absolute worst symptom (short of anaphylaxis) which tortured me for 3-4 years and is now completely gone from IVIG & Rituximab. I am NOT saying these are the right treatments for you and do not know enough about your situation but they ended up being the right treatments in my case.

    This is what actually caught my attention from your post b/c I had not heard of IgD. I have been tested repeatedly for IgG, IgM, IgA, and IgE but have never been tested for IgD (to the best of my knowledge). So I Googled it and it seems to relate to B cells and autoimmunity but I am not quite sure how. I have no science background prior to what I have learned since getting sick. I found a journal article on IgD and am copying it here in case helpful:

    I was curious, what did your doctor(s) say that the elevated IgD might mean?

    My BP was consistently very low (around 80/50) prior to treatment but my HR was all over the place and was in the 160's and 170's every day in 2013 and my quality of life was zero until I was put on Atenolol. I was later diagnosed with Autoimmune POTS (among several other problems). It is (finally) in remission from IVIG & Rituximab which got to the root cause vs. the Atenolol and Midodrine were like a band-aid (although certainly better than not having them at all).

    Just curious, do you have allergic reactions and/or muscle weakness? Best wishes and welcome to PR.
  5. David_101


    I've done PAVAL which came back negative. Also a lot of other auto antibodies came back negative as well which perplexes my neurologist. We decided for IVIG because it was reasonable to assume that this is autoimmune-related based on the presentations after my cold.

    Other avenues is if this is still the virus (I dont have a cold anymore) like a meningitis situation, or if this is protein related if not autoimmune?

    It's hard to pin-point but the damage to my small fibers are shown.

    Personally with the rectum muscle issues (even though rectal exam and colonoscopy was normal) I have no idea why my muscle is pushing down at rest when I sit and lay.

    I dont have much muscle weakness outside of my rectum. Dripping urine which might be related to sacral nerve according to urologist.

    I did have an incident with carvedilol where it caused my leg muscles to weaken to the point where walking a short distance made unable to walk. I was buckling at the knee. For whatever reason, I had to be on a wheelchair for a week. Took myself off of the medication, and my left foot left has been restless/tremorish.

    I'll take a look at the IgD resource. Nothing much from my rheumo who ordered the test but this was my main abnormality.

    My IVIG is for the neuropathy caused likely by autoimmune. Just that this seems more like a hail Mary approach at this point.

    I did watch Dr. Oaklander's video on SFN presentations and possibly some of this does line up..but ideopathic then I really dont know where to turn honestly.
    Last edited: Dec 7, 2018
    Gingergrrl likes this.
  6. MTpockets


    Consider getting your vitamin b12 levels checked, if you haven't yet. Prolonged deficiency can lead to nerve damage, which might explain the bladder and bowel problem. It also causes anemia which might explain the heart involvement. The burning pain sounds like it could be neuropathy, also a symptom of low b12, as is insomnia. Using Klonopin can deplete your b12 levels, as does illness or stress. This may all be a shot in the dark, but around here we try to leave no stone unturned in our search for better health. Good luck.
    taniaaust1 likes this.
  7. Moof

    Moof Senior Member

    Cold, stinging and itching are signs of poor circulation. When I was bed-bound after getting the 'flu, I nearly ripped the skin off my hands due to the intense itching, and all the nurse could come up with was, "I hope it's not contagious"!

    I eventually realised that it was due to my immobility during the crash, and that getting better circulation into my hands stopped it completely. I rarely have it now – I'm not so severely affected – though I often still get blue, cold hands in the evening when I'm immobile because I'm tired, and Reynaud's when the weather's cold.

    I can't help very much with the other symptoms, though I echo what @MTpockets says about B12 (and folate, on which B12 depends to work properly). MMA and homocysteine tests for B12 are reasonably reliable, but serum B12 is not.

    I really hope you find some answers so that you can make some progress.
  8. Gingergrrl

    Gingergrrl Senior Member

    I think knowing that you are negative on the paraneoplastic autoantibodies is very helpful b/c I was positive for two in that panel which led to having lung cat scans and other tests to rule things in or out. A lot of dysautonomia is turning out to be autoimmune (I don't know statistics or percentages) but a lot of the research is going in this direction.

    This makes sense to me and IVIG can be very helpful for small fiber neuropathy and other things that you mentioned. It can help both immune deficiency and autoimmunity and it can help even when the diagnosis is unclear. I would just confirm that you are not a blood clot risk prior to starting (getting the anti-phospholipid panel) and take all precautions to do it as safely as possible (pre-meds, slow infusion speed, etc).

    Does your doctor suspect this is due to autonomic dysfunction or some other cause?

    I didn't really understand it but am curious what elevated IgD means? I had elevated IgM for several years but I have no idea if this is related.
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I used to get Raynaud's badly and from I know it usually just affects body extremities and would not affect a whole hand or foot.. more so just the fingers, toes.. and my end of my nose used to also be affected by this. My affected areas used to turn white as if all the blood had gone out of them.
  10. manasi12


    Did u have a look at CREST syndrome ? It is autoimmune and clinical features are oesophageal dysmotility and Raynaulds .

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