hi all — very long — sorry!
AnonymousJanuary 25, 2007 at 8:36 am
I’m new here, and I can’t believe I am posting my story YET again in a different forum in the hopes that somebody will say, “Yeah, that definitely sounds like (_______)…or me!” Like many of you, I certainly have been put through the ringer for the last 9 1/2 months. So…here I go again:
I’m a 30 year old male, living in New York City. I have had strange medical things happen over the course of my entire life, really, but nothing too alarming — sleep paralysis now and then, once diagnosed with lichen planus, had 3 swollen glands removed when I was 17 (benign), strange left wrist that would sweat out of the blue, eczema, cognitive issues — word retrieval problems, switching letters and numbers, short-term memory, passed out only once in my life and it was 5 minutes after given a booster shot (when I was about 14?). Even with all of these strange things, I still considered myself pretty healthy! I ran the NYC marathon in November, 2004, so I couldn’t have been TOO unhealthy? (The cognitive issues and eczema didn’t come until my twenties). Anyway, when I was 20, I developed chronic prostatitis that lasted for 10 years (still have it, although not quite as bad). I was actually told not to worry about it from one urologist, so I just dealt with it for so many years without getting any treatment…until February, 2006 when I decided that enough was enough!
A different urologist diagnosed me as having nonbacterial chronic prostatitis and gave me 1000mg of Aleve to take for 2 weeks and then something called uroxatral to shrink the prostate (even though it wasn’t enlarged, he thought it could alleviate the burning symptoms). So, to my surprise, it did seem to help a little bit — the Aleve that is. Then I tried the uroxatral, which didn’t do anything, so I went back to the Aleve. I didn’t want to be on the Aleve for too long, having heard about stomach bleeding, etc. A few days after I went BACK on the Aleve in the beginning of April, I started to get stabbing pains in the liver area for about 36 hours straight. Oh, I forgot to tell you that I had a bad headache in the BACK of my head in January of 2006 (before starting on the medications) and started to notice that I would get scars from very minor cuts, so something was probably already in motion and maybe the medications could have been the nail in the coffin.
After the liver pain, a few days later I started to get what I call “clubbing pains” like diffuse, little bone/connective tissue pains from EAR LOBE to TOE, I mean they were everywhere. I thought I was just coming down with something so I didn’t worry about it too much. Then a few days later I started to get severe muscle burning pains (like somebody was dumping acid in my muscles). I was still having the strange clubbing pains, too. Both pains took over my entire body, and I would get them every 10 seconds! Then my calves started twitching nonstop, which in a few days grew to twitching everywhere! And I do mean everywhere. I went to the ER was told it was anxiety (you know the drill) and given Tylenol (yeah, thanks!) Well, I kept getting worse — this was definitely not a stress or mind-over-matter type thing. A few weeks later, with no change at all and VERY little sleep from all the pain, I started to get the paresthesia (water dripping sensations) — I forgot to mention that I also had bugs crawling sensations on my torso way back in 2000, but I was told not to worry about it. (UGH!) The water sensations went from water dripping down my leg to little drops of water everywhere from eyeball to limbs, hands, feet, no part was left untouched. A month later (and suicidal at this point due to the fact that all symptoms were still there and there was no waxing and waning) I started to get painful beesting and electric shocks sensations — and other dysthesias. I had already had a normal EMG/NCV and an MRI with constrast of c-spine and brain. By July, my joints had started to get stiff — from knuckles to shoulders…everywhere…you can even see some disfigurement in the knuckles. I also noticed beaus lines on my toenails (which I read can be from malnutrition or severe illness). I also started to have involuntary jerking of limbs, fingers, toes (along with the constant muscle twitching). I would just cry all day (and I very rarely cry), because the neurologists all said different things (like “fleeting neuralgia” “post-viral” and just gave me drugs to cover up the symptoms). The drugs — lyrica, neurontin, vicodin, amnitriptyline — nothing even touched my pain, because this wasn’t constant, steady nerve pain…this was START AND STOP pain everywhere every 10 seconds…never knew where it would be.
Finally, after my own research, I thought it could be Lyme Disease, so I found a reputable LLMD in the Connecticut. My blood results were IFFY, not technically positive (even through Igenex), but I did have a positive on (for those of you familiar with Lyme) band 41 and 58 and IND on 39. My sister, who also has had very strange aches, pains, and other bad symptoms throughout her life (still a mystery to this day) had the exact same results as I did plus a + on band 30. I also found out that I am HLA-DR4 and DR7 positive, so this could explain a concurrent autoimmune response, although my ANAs were 1:40 (twice). My sister also had borderline positives and even one that was 1: (four digit number), but lupus was ruled out because she got a little better…but isn’t this normal…waxing and waning? I know this is one big non sequitir!
My CD57 (another supposed Lyme marker) was indeed low at 42, now it’s 36 (normal is 60-300). I failed a muscle kinesiology test that indicated I could have Lyme (but how reliable are those?). I have a few other abnormal results from a lab in California — Immunosciences Lab:
IgG Variable Antigen to Lyme 2.1 normal is 0-2
CD4+ Cell to Antigen A 16 normal is 0-10
CD4+ Cell to Antigen B 13 normal is 0-10
TNF-A Lyme Antigen (A+B)*2 1020 normal is 0-1000
but everything else was normal…even testing for coinfections.
So I did a total of 5 months of antibiotics…the only group I didn’t try were the -cillins. I even did 90 days of IV Rocephin and I had no change at all, no herxing. Also did 38 sessions of hyperbaric oxygen and, again, had no change whatsoever and no herxing, which leads me to believe that I either don’t Lyme or it has no turned into an autoimmune disorder?
Still with me? I went to an integrative doctor in NYC, and he found high levels of mercury, candida, and many food allergies (I know the first two are controversial in the medical community). Well, I did several months of mercury chelation with DMPS and DMSA, took antifungal meds and changed diet to stay away from inflammatory foods and ones I am allergic to. I’ve been taking lots of MSM, B-12 shots (actually had a very high level of B12 in my blood before taking any B12 supplements and was told it was probably just circulating in my blood because my nerves weren’t able to use or absorb it, which is why i am taking B12 shots), essential fatty acids, glutathione pushes, 5HTP/tyrosine (because my dopamine and serotonin levels were low — not a shock), a very alkaline diet so my body pH is less habitable for any critters that may be in there, magnesium taurate, essential oils, etc. etc. End result — ABSOLUTELY no change my status. I was still being shocked, stabbed, clubbed…and twitching, jerking every 10 seconds (on average).
So I made one last push and found another neurologist. He made me do another EMG/NCV, because he said that they are often read incorrectly (lovely, eh?) or results may have evolved (or devolved!) since last test. Well, he was right. I was found to have slowing in the NCV and was told I have peripheral neuropathy. Not only that but I had autonomic dysfunction (which I have read is less common in CIDP but possible) due to an abnormal QSART (I didn’t sweat at all when I was tested) and abnormal heat sensitivity test. I also get a little light-headed and tachycardia when I stand up (although these symptoms don’t bother me at all compared to the symptoms from hell — pain and parasthesia!) Seems like I have small AND large – fiber neuropathy. I will get the skin biopsy results in about 10 days to see if there is breakage, damage to these small fibers, which the neurologist is already telling me there probably is. I have developed some minor weakness in my left foot, but, unlike many of you, weakness for me almost seems to be an aside! I just noticed it recently, actually the neurologist noticed it before I did. I guess I have a little tremor in my left hand too, or so he tells me!? I notice my stiff joints more than slight weakness and, of course, the pain and parasthesia without any breaks is driving me insane!! I have never been so depressed in my life and if I ever get better, trust me, I never will be this depressed ever again!
This new neurologist just tested me for paraneoplastic syndrome (bloodwork sent to the Mayo Clinic), although he said it’s unlikely I have cancer due to my age AND the following tests (you guys are probably familiar with these):
quantitative immunoglobulins, immunofixation electrophoresis, cryoglobulins, c1q binding assay, SSA, SSB, ANA (yet again), ANCA, dsDNA, thryoglobulin & microsomal Abs
The neurologist seemed somewhat hopeful that he could help me, which is nice, but I have been let down so many times by uncaring and insensitive doctors who just told me to “get over it.” Now I at least have paper that shows I have these neuropathies! It’s not just neuropathy either, bones and muscles have been affected too…nails, skin. If this were autoimmune and NOT lupus, what could affect so many body systems — small/large fibers/autonomic/bones/nails/muscles/skin — pretty much everything!??????
AnonymousJanuary 25, 2007 at 8:36 am
One last thing (I promise!) — I was found to be HYPERreflexive, and I see that very common symptoms in CIDP are loss of reflexes, weakness, and sensory loss…besides the minor weakness, I don’t have these symptoms, but my neurologist put “LYME” AND “CIDP” on my blood script. Could I have a strange variant, or maybe if I was left untreated, I could later get sensory loss and more weakness? It seems that peope often START OUT with these things instead. So confusing! It’s hard to get treated if the doctors can’t figure out what is wrong with me.
Thanks so much for taking ALL this time reading. I really appreciate it, and if turns out that my Lyme (if I even have it) has turned more into an autoimmune process that can be much improved with IVIG or plasmapheresis, I promise that I won’t abandon all the other clueless and scared people out there who come to this website. I’d feel like it was my duty to help others going through such similar torture — and that’s what it feels like, really — like I am being tortured. Ok, ENOUGH writing. Thanks again for any comments, suggestions, support!
Hope you are all hanging in there and getting better! 😉
AnonymousJanuary 25, 2007 at 10:20 am
Your post is very much like mine would be. Many of the same symptoms. Still no diagnose. Rude doctors with little time.
Right now I cling to a result regarding my thyroid, where my antibodies are of the chart, but the TSH, T4 and T3 are still within the so-called normal range. Many doctors do not know or disregard that there are new recommend ranges. The signs say an autoimmune disease. I have researched the disease, and it can cause most of the symptoms you mention, as some other autoimmune diseases can. Pick the needle in the haystack! If we just could!
Have you been tested for rheumatism?
AnonymousJanuary 25, 2007 at 10:23 am
It sounds like you have found a doctor who you can trust to see this mystery to a solution, which is half the battle sometimes. I have to tell you that your story has amazed me. You have taken it upon yourself to become educated so that you can communicate your health history and all the various testing and results, all that can help the doctor so much. Keep up your fight to find out what it is exactly that you have. I know sometimes the wild goose chases are enough to drive anyone crazy, let alone the one who is the patient. I think alot of the battle of trying to find a diagnose is the fear of the unknow and all the worrying about the “what ifs”. I know if you stick with your search for an answer and NEVER accept a doctor saying he has no idea what you have you are on the right track, don’t give up your search.
My daughter has CIDP since about 9 – 18 months of age. It took till she was 3 1/2 years old to get a diagnose. Speak about wild goose chases. Finally we had 16 trips to Mayo Clinic over about 6 months and then alot of the “what ifs” diappeared. My daughter’s neurologists is there for us ANYTIME we have questions or concerns, he is one of our “Godsends” as I put it. He always tells me to explane my worrys and concerns and let them become his, he can answer the questions or deal with figuring things out. He tells me to just take care of my family. Abby is my daughter who is now 10 years old now.
Keep up your search!
Your story isn’t too long, it is what you have been dealing with and shows you have been a very good advocate for yourself!
Keep us informed of your findings,
AnonymousJanuary 25, 2007 at 6:34 pm
Sounds familiar… I probably had Lyme (testing equivocal), went undiagnosed for a long time. I responded to antibiotics but eventually became resistant and relapsed.
Getting the right neurologist can make all the difference. I saw five until I found one who had a clue. You should also see an immunologist if you haven’t already.
IVIG treatments have gotten rid of most of symptoms but I still have autonomic problems that are underlying and we need to re-evaluate some things.
I’m in NYC too. You can email me if you like.
AnonymousJanuary 26, 2007 at 5:54 pm
Thanks to everyone who took the time to read AND respond.
Ninus, when you say you have researched the disease and I have many of the symptoms, are you talking about CIDP, thryroid disease, or an autoimmune disease in general? I had my my thryoid and antibodies against them checked and they came out OK, but you are absolutely right about the ranges. I have two friends whose thryoid results came back within range but other doctors looked at them and thought they were borderline so both were given thyroid medication and now both are sooo much better! Yay for good doctors! It’s too bad so many of them didn’t release that this was the cause of their problems. If they don’t see a HIGH or LOW flag on the blood results, they are just ignored by too many MDs. Ninus, which symptoms do you have that are like mine if you don’t mind? I read some of your prior messages and I couldn’t find a lot that we had in common. Thanks!
Zipzap, I emailed and private messaged you. I’d like to keep in touch with you due to our similar histories.
Thanks again for the support, everyone! I think the Lymies on lyme boards were getting upset with me when I started to think that I had a different manifestation of Lyme due to my autoimmune genes. I was told to keep trying different antibiotics and I tried almost all of them. That’s when I thought this has to have moved into the autoimmune realm. I’ll let everyone know what the blood tests say in a few weeks.
AnonymousJanuary 27, 2007 at 6:18 pm
I think that I just tried to say that I understand your long post. I have discovered that I am not very good at expressing my symptoms. There are so many of them and different ways to discribe them. Right now I am very depressed and chocked into limbo from confrontrations with doctors and no diagnose. But to tell you what I recognised from myself I have quoted you and deleted the things I do not recognise. (..) means my comments.
[QUOTE=oneofthesedays] word retrieval problems, switching letters,
bad headache in the BACK of my head, “clubbing pains” like diffuse, little bone/connective tissue pains from EAR LOBE to TOE, I mean they were everywhere. severe muscle burning pains, calves started twitching nonstop, which in a few days grew to twitching everywhere! VERY little sleep from all the pain, I started to get the paresthesia, water dripping sensations,bugs crawling sensations, electric shocks sensations — and other dysthesias. normal EMG/NCV and an MRI, my joints had started to get stiff.
(you can even see some disfigurement in the knuckles – Rheumatism???).
Involuntary jerking of limbs, fingers, toes along with the constant muscle twitching. cry all day, this was START AND STOP pain everywhere every 10 seconds…never knew where it would be.
Finally, after my own research. (to much of it now – and I am confused)
candida, and many food allergies. End result — ABSOLUTELY no change my status. I was still being shocked, stabbed, clubbed…and twitching, jerking.
abnormal heat sensitivity. little light-headed and tachycardia when I stand up, symptoms from hell — pain and parasthesia! weakness, tremor in my (right) hand. I notice my stiff joints more than slight weakness and the pain and parasthesia, depressed.
uncaring and insensitive doctors who just told me to “get over it.”
I am told by doctors that I belong not in their department but in the other. It seems that from the doctors view that I am in the middle of neuro, endo, rheumatism and psychiatric. I am still wondering which one or all of them. Whether it is GBS/CIDP in connection with upset in the rest of the body to rise antibodies. I wish that I could find the needle in the haystack! In the past few days I have been considering being better of dead, but I still hang on and try to distract myself. Sorry, if this sounds gloomy, but I am depressed. Hope is far away right now.
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