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I need a diagnostician (Where's Dr. House when you need him?)
Hi,
I'm Krista. I've had a subacute onset of peripheral neuropathy that began in July. I'm now on an intensive search for the cause of it but no answers yet. Here is the letter I wrote Oct 23rd 2012 to the neurologist that I saw on Nov 7th. Unfortunately since I saw him and told him I was getting better and didn't need any pain meds, I've been rapidly deteriorating. The parasthesia has crept up to above the knees and has also started in my hands.The burning and stinging in my feet and legs is getting very bad. I think I'm going to have to ask for some anticonvulsants which I have not as yet used (although I probably needed them for the cramps and fasciculations the first two months I had it but no one would give them to me. The cramps and fasciculations were almost completely gone when I saw the neurologist on Nov 7th but now my legs and arms are spontaneously cramping up sporadically all over the place. I've turned down having a CAT scan of my pelvis, abdomen and chest because it's too much radiation and I thought I was getting better. Now I'm changing my mind. I also turned down an MRI of my brain due to my worries that this all started after a lot of unusually high exposure to electromagnetic fields from TMS and MST(see letter). But the facial symptoms are almost gone so that can wait. Tests I've had which have all been normal: Numerous liver and kidney function tests CBC Phosphorous, Magnesium, Calcium TSH Free T3 ESR C3,C4 ANA Rheumatoid Factor C-Reactive Protein Vitamin B12 Serum folate Fasting Glucose HbA!C glucose tolerance test Tests I'm getting results back for on Monday Nov 19th 2012: Lyme Disease Paraneoplastic Antibodies Blood Protein Electrophoresis ENA Chest X-Ray Tests I'm going for next week: Mammogram, ultrasound of breasts Ultrasound of pelvis and abdomen The first neurologist I saw has diagnosed me with subacute development of axonal peripheral neuropathy, however, I really feel that it started as a sensorimotor neuropathy but the motor neurons were almost completely recovered before he saw me on Oct 4th. He only saw mild twitching and some cramping and discounted it as insignificant despite the fact that it had previously been very disabling to me and had only recently improved. Here's the letter to the second neurologist I saw. Hi, I have an appointment with Dr. CXXXXXX on Nov 7th at 3pm and I would like to make sure I give him as complete an understanding of my illness and its development as possible to help him make an accurate diagnosis. So here it goes: History of Symptom Development I began a series of 14 Magnetic Seizure Therapy (MST) Treatments on June 12th 2012. They were 2 to 3 times per week with the last one on July 18th . MST is an experimental treatment for severe treatment resistant depression. I was part of a clinical trial. It involves the use of an electromagnet to induce a small seizure in the Dorsal Lateral Prefrontal Cortex in the right hemisphere of the brain.. Its advantages are no disorientation after treatment and no cognitive impairment. I demonstrated these advantages with extensive ongoing testing during the trial. However, I seemed to be having some problems that other patients were not having. I was continually waking up before the neuromuscular agent, succinylcholine, had worn off, leaving me completely paralyzed and unable to breathe, but fully awake, aware and oriented. They kept lowering the dose of the succinylcholine until it was down to 10mg (practically nothing) and raising the dose of the anaesthetic, methohexital, and the waking paralysis was still happening (although not as badly or prolonged) . Also, I would not recover well afterward, with weakness lasting much longer than in other patients. The stretcher had to be brought to the exit door of the recovery room and then I was half carried to the recovery chairs because I could not walk very well. My knees would buckle under me. The significance of this is that much later on, I read that the use of succinylcholine is contraindicated in patients with neurological disorders because it can cause prolonged paralysis and weakness and it has also been known to uncover pre-existing, but as yet subclinical, neurological disorders, by aggravating them. Around the 6th treatment of MST, I noticed I was getting many, many more involuntary jerking movements than I used to, at home, while resting or about to fall asleep. I didn’t think much of them. I thought they might be related to the treatment, but I knew that these were hypnic jerks that were supposed to be benign. (I didn’t know at the time that a sudden increase in them might not be so benign. I also began to get wild, psychedelic auras with my migraines (I get migraines a couple times a month), and the few strange déjà vu type of experiences I also had in between MST treatments. Then after the 13th treatment on July 16th, I noticed about 5 minutes after awakening, that I had twitching in my calf muscles. I didn’t think much of it at the time, because it didn’t hurt. I figured it would pass. Unfortunately, it did not. A few hours later, the twitching spread to all over my legs and a few hours after that I began to be in terrible pain. I was getting cramps when I walked as well. It felt like I had pulled every single muscle in both legs. And then the left side of my ribs started twitching and hurting as well. I took some pain killers which did little. Over the next two days, the twitching died down though and then stopped. I thought maybe it had been from lowering the succinylcholine too low and asked them to raise it back to 15mg. It was only later that they told me I had not had any excessive movement from the 10 mg. Raising the succs might have only made things worse. I went into the 14th treatment with the twitching gone but came out with it again! And it hasn’t stopped since, (although it has improved a lot, but slowly over the last 3 months). I stopped the MST treatments when the twitching and cramping would not go away. It was a continual, 24 hour a day thing, in the legs and left ribs. They interviewed me about exactly what happened and started testing me for possible causes of my symptoms. About a week after I quit MST, I had motor threshold testing in preparation to go back to Transcranial Magnetic Stimulation (TMS), as it had helped to reduce, but not cure my depression in the summer and fall of 2011, previous to starting the MST. (I had volunteered for a clinical trial of Deep Transcranial Magnetic Stimulation in June of 2011. but I couldn’t tolerate it. It was too painful. I was given compassionate TMS for free as a result of this and I tolerated it. When it only worked partially, he recommended I try MST but there were ongoing delays in beginning the trial and I relapsed into severe depression between Dec 2011 and the beginning of the trial in June 2012. Wikipedia has an entry on TMS if you want to know what it is. Anyway, a day after the motor threshold testing, that I needed in order to go back to TMS, I developed twitching in my right arm. (During motor threshold testing, the left brain’s motor cortex is stimulated to cause the right thumb to twitch.) It became, and still is, the most consistently painful and severe location for symptoms. Naturally, it seemed like the threshold testing had brought on another symptom and I then refused to go back to TMS for fear that all these electromagnetic treatments were causing neuropathy in me. I really don’t know and maybe never will, whether that is, or is not, the case, but it certainly seemed that way at the time. I am however sure that you will never find these treatments listed as etiologies for neuropathy, no matter how hard you look. Well, actually, I read an article that they suspect exposure to the electrical fields of TENS to be a factor in the development of ALS in a lot of baseball players—not that I think I have ALS but they have drawn a connection like that. To continue with the history, about 10 days after the fasciculation/cramps began, and a few days after they started in the right arm, I developed tingling in the feet and calves. It was at this point that I went to see my family physician. That was when she referred me to you. The tingling progressed to buzzing and then to very uncomfortable “pins and needles” feeling and then they went numb and then tingling and numb. The numbness became permanent, the other feelings varied from tingling, buzzing , pins and needles and occasionally a sense of heat or slight burning sometimes in the evening. In mid-August the left side of my face began to twitch and about a day later parasthesia set in too. And my right arm began to have occasional slight bouts of twitching which it continues to do. It is slight and not painful though. Then in early October my left ear went numb and I began to hear ringing in it. I also felt sort of deaf. The numbness in the ear seems to have gone away recently though. My face continues to tingle, but the twitching has stopped. Also, the twitching and cramping in all areas, except my right arm, began to improve beginning of August and have been improving, slowly and steadily, ever since. It is aggravated by exercise though. I have only recently gotten back to moving around more as exercise was previously just too painful to bear. I was almost immobile for 3 months after it started, because every time I did anything the twitching and cramping would go crazy. That doesn’t seem to happen now. The motor neurons are definitely settling down, the sensory neurons, not so much though, in fact the parasthesia seems to be spreading. Other Important Information, habits and pre-existing illnesses I am an ex-smoker. I smoked an average of half a pack a day from age 30 to 36. I quit cold turkey completely for ten years from 36-46. I smoked intermittently, for probably a total of about 3-6 months of smoking, between 46 and 47. I decided this was incredibly stupid and went on the gum but took about 6 months to get off the gum. I have been nicotine free and committed to staying that way again for almost 2 years. I drink anywhere from not at all, to slightly, to moderately, depending on a lot of things but the last 5 months or so, not at all. I have never drunk more than moderately, and never that much for very long. I usually am a diet and fitness fanatic, except when severely depressed as in now and between 34 and 37. (I had mononucleosis and a herniated disc at that time which was operated on when I was 36 years old-- L4-L5 microscopic discotomy). I have been this heavy only during my last depression and this current depression. I have gained 40 pounds over the last 2 years with this depression. I have Interstitial Cystitis (IC) which bothers me even more that the neuropathy or the depression. I am in chronic pain with it. It seemed like both the TMS and the MST aggravated it a lot but you never really know. It could have been a coincidence. I developed more pain, urgency and urinary hesitancy during these treatments, but I’ve had that before with the IC so I don’t know… I have severe Allergic Contact Dermatitis to seemingly the whole of the modern world. I was diagnosed with multiple , numerous allergies to chemicals in common everyday products by both an allergist and the head of the dermatology department at Sunnybrook Hospital. I use only organic products on my skin and that seems to control it. I have hypothyroidism and my free T3 tested low in August but my TSH tests normal. My GP is going to test it again. I am on 30mg dessicated thyroid. I have very recently developed high cholesterol. I am watching my diet and trying to lose weight. I am on no medications for it. I have Fibromyalgia. All my joints hurt but they can’t find a cause for it, so they call it Fibromyalgia—that’s the impression I get anyway. They say I am very pain sensitive because of it, so I will probably find the testing quite painful. I will try to endure it and not hurt you back (just kidding). My own self-evaluation using the following Websites “An Algorithm for the Evaluation of Peripheral Neuropathy”—from the American Association of Family Physicians (aafp.org) . I think my symptoms fit in Table 4 (Unusual Patterns). “An Easy Approach to the Evaluation of Peripheral Neuropathy” from The Journal of Family Practise (jfponline.com). My symptoms seem to fit in the very last paragraph (“Other Presentations”). These websites suggest my unusual pattern of neuropathy (feet, legs, left ribs, mostly right arm, left side of face and ears) could be: HIV--I'm very low risk for this. Diabetes—has been ruled out. Lyme disease—I need a test for that. I have almost every symptom of Lyme disease. I worked as a dog walker/dog and cat sitter for ten years previous to developing this current depression. (Do not let my occupation fool you. I am probably the smartest dog walker on the planet and have an honours degree in Chemistry and Laboratory Medicine). I spent a huge amount of time outdoors and in wooded areas and parks walking dogs. I want to be tested for Lyme disease and if I’m convincing enough to my GP, I may get that test before I see you. Paraneoplastic Syndrome--- Hmm I’m a once, recently lapsed, but back on the wagon, mostly ex-smoker. Do I need a anti neuron antibody serum test? I actually hope not, but maybe if the diabetes and lyme are negative…. Sarcoidosis—Now there’s a weird disease I’ve never heard of. Maybe if the other stuff is negative, a skin or nerve biopsy would be in order. (ouch) Neoplastic Invasion of the Skull Base or Meninges—I don’t know what that means. It seems to be part of Sarcoidosis from what I can tell though. See the blood test results for everything else that has been ruled out. Medications Up until 2 weeks ago, I was on Parnate for about 6 weeks, slowly increasing the dose from 10 to 20mg, but I couldn’t tolerate the side effects and I read that it can cause parasthesia by interfering with the metabolism of B6, and my parasthesia was worsening, so I’ve stopped taking it. I have started taking 12mg/day of Amitriptylene for my I.C., Fibromyia and Neuropathy 50mg/day of Hydroxizine for my I.C. 30mg/day dessicated thyroid 30mg/day of Lansoprazole for GERD Supplements I was taking before developing Neuropathy: 1500 mg/day Fish Oil (For depression, joint pain, general health) 2000 I.U. Vitamin D (general health) Mega Multi Vitamin: with 30mg B1,B2,Niacin, Biotin; 50mg B6, B12 and pantothenic acid; 400mcg Folic Acid—Stopped taking this about a week after developing neuropathy because my IC was really bothering me and the ascorbic acid in the multi might be irritating to it. 700 mg twice a day of Glucosamine (for joint pain, and I.C.) After developing neuropathy and worsening IC added: 540 mg/ 3X day Cysta Q: for my I.C. –contains Quercetin, Bromelain, Papain, and Valerian Marshmallow Root Tea—large quantities all day. It seems to work like an anaesthetic on the bladder. 500 mg twice a day l-carnitine 60 mg twice a day Co-enzyme Q10 200 mg /day Magnesium bisglycinate in morning 333mg Calcium, 167 mg Magnesium, 200 I U Vitamin D—combination tablet—in evening Early September Added: 50 mg twice a day B complex (reduced this to once a day when I added 50 mg P-5-P and may stop taking it when I add benfothiamine next week) Raised Co-Enzyme Q10 to 60mg three times per day Early October Added: 3 mg twice a day methylcobalamine (bioavailable B12) 600mg /day alpha lipoic acid (had to stop taking this recently due to bad reflux of the acid problems) A week later Added 1 mg three times per day l-methyl folate (bioavailable folate) 25 mg twice a day Pyroxidal-5-Phosphate (P-5-P) (bioavailable B6) 80 mg Benfothiamine (bioavailable B1) 3X per day Here is an email I wrote about seeing the second neurologist: He seems like a fine fellow--well, except for the one moment where he questioned my sanity, wondering if it was all in my head. But the stigma and discrimination of mental illness is everywhere. I'm used to it. My therapist said not to tell him I'd seen another neurologist, to get a completely independent opinion. I thought that good advice and didn't say anything at first, but I've been worrried about the CAT scan decision, so I wasn't completely decided on what to do and brought Dr. XXXX (the first neurologist) report with me, in case I changed my mind for any reason. So he did all the pinprick, reflex, walk this way and that --all the same neurological tests neurologist #1 did --except the Nerve Conduction and EMG. (Dr. #1 does nerve conduction very first and asks questions later. So he already knows if you've got a problem or not before he even talks to you.) Then he gave me a requistion for a test for ENA -A Sjogren's Syndrome test. (Dr. #1 suggested testing for Sjogren's so that's the same) and a blood test for Protein Electrophoresis. Then Dr. #2 tells me, "We can do an EMG and Nerve Conduction, but it won't be until February and I can tell you right now, I don't think we're going to find anything." I still didn't say anything, thinking that could very well be true by February because I'm improving. (Note insert on this: not anymore. I'm getting worse now). I heard him saying to his resident in the hallway he didn't have much concern about there being a malignancy and he wondered why paraneoplastic antibodies had been tested for already. When they came back in I told him I'd seen another neurologist and showed him the report. I guess he was surprised I tested positive for axonal sensory neuropathy. I told him the reason why I decided to tell him, against advice to get an independent opinion, was because I need to make a decision about the CAT scan. I asked quite ernestly, does he think I really need to subject myself to all that radiation if I'm improving? Would I be improving if I had cancer? He said, no, I would not be improving if I had cancer and asked me very pointedly about it again. I insisted I had improved a lot since the onset of the condition and he said, no again, I probably don't have cancer and don't need to get a CAT scan right away. He said to go for the blood tests he ordered and go for a Chest X-Ray. (I seem to have a chest cold--either that or some dreaded disease. It's hard to tell which these days. Maybe it's waning Sarcoidosis. Anyway, if the chest X-Ray or the antibodies come back positive, I'll go for the CAT scan, but based on his advice, I think I'll hold off on it. He also weighed in on the MST debate. He said some of my symptoms could have been caused by the MST, especially the increase in myoclonic twitching, that it might have given me a bit of epilepsy or increased activity of the nerves. And the facial symptoms and ear symptoms might possibly be due to the MST--maybe, maybe not. He says he's concerned about the facial numbness and would I like an MRI of my brain? I said I'm not into being exposed to anymore electromagnetic fields if I can avoid it. He said it could wait, if its improving, we can wait and see. He said he doesn't see how the peripheral neuropathy could be related to the MST though. I said, "Then why did it go away and come back again at the next treatment. And why did my arm start after the motor threshold testing? It's just too much of a coincidence." He looked uncertain, kind of shrugged and said he didn't know. He concluded with saying that I've certainly been a very interesting patient. I said, "Yeah, that's what my GP said, but she says it's never good to be interesting." He agreed. |
Tests I'm considering asking for.
If all those tests come back negative and I continue to worsen, I might ask for:
A CAT scan More tests for Sarcoidosis: Reason--my great,great grandfather had Sarcoidosis, my symptoms fit and I have other associated diseases like Allergic Contact Dermatitis and numerous other allergies Serum A.C.E. dihydroxyvitamin 1,25-D 25 hydroxyvitamin-- D (25D or D2/D3) Soluble IL-2 Lysozyme, Serum More tests for Sjogren's Syndrome: Reason: My symptoms fit this the best of any possibility, I fit the typical demographic that gets it, there's a history of autoimmune diseases in my family. To complete the full Sjogren's screen, I need: Mitochondrial Antibody with Reflex to Mitochondrial Antibody Titer Thyroid Peroxidase Antibody (Anti TPO) From the British Medical Journal--Peripheral Neuropathy Stage 3 investigations: These have not been covered: Urine: Bence-Jones protein Anti HIV antibodies Antineutrophil cytoplasmic antigen antibodies (p-ANCA and c-ANCA) From Neuromuscular Disease Center--Washington University, St. Louis MO. USA: Antibody Tests for Sensory +/- Motor Neuropathy: Reason: More possible autoimmunity IgM vs MAG GD1b TS-HDS Sulfatide HH3 IgG vs Sulfatide Other tests: Infections: CMV IgG, Toxoplasm IgG Toxins: lead urine--heavy metals Reason: the methylated B vitamins seem to really be helping my mood and energy. I suspect I don't methylate B vitamins well and this same lack of methylation can cause toxins to build up in the body as they need to be methylated to be removed. |
Welcome to NeuroTalk:
I have two comments here to start with. Do you know what your B12 level actually was, when it was described as "normal"? Labs still report using old ranges that go down pretty far into a LOW area. The new recommended low Normal is 400pg/ml.(US units). Were you taking your B12 supplement when testing was done? If not, it would be helpful to know what level you had when you were tested. I do think you may have a problem with that succinylcholine you were given so often. Here is a link about it: http://en.wikipedia.org/wiki/Suxamethonium_chloride GBS listed in this article is a form of neuropathy. Various neuropathies have been reported with neuromuscular blocking agents: http://ceaccp.oxfordjournals.org/content/6/3/119.full Not many people get repeated (often) doses of succinylcholine, and therefore, it does not appear in medical papers often. I'd also suggest researching the neuromuscular junction. This area can be damaged. I've seen papers in the past, which showed cellular changes in this area induced by various toxins, like botox. Seems like you are covering many bases with your supplements so far. People can have mutations in methylation. One of our members here just had DNA testing for it. Here are his results: http://neurotalk.psychcentral.com/thread179732.html |
What other symptoms of Sjogren's do you have?
Sjogren's testing should include anti Ro SSA & anti la SSB. However, 40% of Sjogren's patients are sero-negative, so if this is suspected and labs are negative, then a lip biopsy should be considered. |
I need a diagnostician
My B12 level was actually high because I was already on the methylcobalamine, so it's hard to say if I was deficient when the symptoms began. They should have tested that in the very first round of testing, but I guess they just forgot it, so now I'll never know. But really, it shouldn't be worsening now like it is, if I've corrected the problem. The tingling has moved up past the knees and the burning in my feet is approaching intolerable. I'm going to try to get some anticonvulsants for it today or Monday.
Other symptoms of Sjogren's include a lot of dryness, fatigue, joint pain and swelling and GERD (which is also worsening lately.) As far as the succinylcholine goes, I found an article once stating that it can aggravate and bring out a pre-existing subclinical neuropathic condition. But millions of people have had repeated doses of it for ECT. I extensively searched the literature for cases like mine involving ECT and I found just one case study of it, reported back in 1986. (The procedure for ECT and MST are exactly the same except that a machine that causes an electromagnetic field is used to induce a smaller, more localized seizure with MST, rather than an electric current with ECT.) The second neurologist was comparing my concerns about having an MRI to cell phone use. I said that was really minimizing the impact that 14 treatments on my brain with a strong enough electomagnetic field to induce a seizure could have had on me and has anyone even had 14 MRI's in 5 weeks? He agreed we're talking about much stronger fields than cell phone use. --Sheesh. |
Sorry for double posting, but they are delaying my posts and I can't find the edit function either.
Also the ENA test is four tests for Sjogren's and includes the anti- Ro and anti-La (SS-A and SS-B) That should be in on Monday. Also, I've seen that post about the genetic testing for methylation. The 23 and me test is at least a thousand dollars though and I can't afford it. I may ask my pdoc at The Centre for Addiction and Mental Health CAMH, Toronto, today if they do that genetic test there. I should go get the specific name of it now. |
All new members are watched for a brief period, to see if they are spammers etc. It will not be long if you continue posting,
before the edit function opens. Once it does it only remains active for 24 hrs. After the 24 hrs the button will no longer show. |
Just curious why the edit function doesn't remain indefinitely. Hope I didn't hijack the thread. Thanks.
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One can only edit their own post, for 24 hrs. So the edit button only shows for that time period.
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Why doesn't the edit button stay on indefinitely. I know that it is on for 24 hours where you can edit your own post. I just don't understand why it isn't on all of the time; why it's set up so that it's only for 24 hours. I believe it was at the forum before this one came into being. Just curious as to why it's set up that way. Thanks.
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The set up was decided by DocJohn and the admins at that time long ago when we first started here.
The time limit was decided upon to prevent destruction of threads, from spurious editing out of anger or conflict. Some people can get upset easily and then decide to remove all their posts. Some may flame others, and then remove the evidence, but that is less common here. Also editing at later dates, can confuse the content if opinions are then changed and the other following posts can't or don't reflect that. Threads then would become hard to understand when parts of the conversations are removed from view. DocJohn understands the net very well, and wanted to keep things here as stable and readable as possible. If you have a good reason to edit or remove something you can always contact one of us on the community team, to do it for you. A common reason we get is from someone who puts too much personal identifiable information up, and then decides later to remove for safety's sake. Some people find relatives or their doctors reading here, and don't want them to know about it. Things like that. I personally find dead links problematic for myself...because the net does change and links change. But not many people post as much data as I do, so that is not a big problem for everyone. I can update my own posts luckily and have done so on 3 long threads recently. If you have a dead link, you can contact one of us to change it for you, or remove it. When contacting us give your post ID address and the new links you would like substituted. Sorry to hijack your thread, Krista! ;) |
Thanks for all the information.
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Went to the GP to get test results
Lyme disease and chest XRay were negative. I can't believe the rest are STILL not in! They're cancer tests for Pete's sake. Making someone wait over 3 weeks for cancer tests results is just cruel. They're only blood tests. Even if they sent them out it should not take 3 weeks! That's the last time I go to the hospital blood lab unless I really have to. The secretary said she would try to track them down. I will call her tomorrow and see if she has found out what happened to them, if not, I'm calling the lab myself. Sheesh. Also she booked me for an ultrasound at the hospital and it's going to be 6 weeks! I should ask her to try a community clinic. It shouldn't take that long to get in for that either. The hospital services suck by the looks of it. |
Some blood tests take a while. The electrophoresis types, and antibody types take a while. Sometimes they run out of the special reagents and have to reorder them, etc. These are more complex tests than the chem panels or CBC's.
If a lab does not do some of those special tests, they may send them out. That would be another delay. |
It took six months to track down my glucose tolerance test. I was pretty sure it was negative, but every doctor wants to run their own when you have neuropathy because it is the easiest thing to blame it on. Despite an existing file of negative tests.
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Yeah? I had to talk my doctor into doing a glucose tolerance test. She seemed quite sure I wasn't diabetic (and she was right.) I called the hospital where the tests were done. They sent them out. They said to give it a few more days which will make it 3 weeks which seems like a long time. I also found a place that will do my pelvic/abdominal ultrasound next week instead of the Dec 31st I was booked for at the hospital. I'm just getting so impatient about wanting some answers, perhaps because of my worsening symptoms. If I was continuing to improve, I wouldn't care how long stuff was taking at all. It seems like I may be developing a relapsing/remitting pattern which suggests autoimmunity which brings me to my next question:
Does anybody know where in Toronto Canada I can get screening for anti neuronal antibodies of the NOT paraneoplastic kind, like anti-proteinemic ones such as anti-MAG, or anti-sulfatide, anti-HH3, anti-GD-1b etc. I've tried the community blood labs and the local hospital and can't find them. Any suggestions on where else I can look? Maybe a downtown hospital like Toronto General or Western or Sunnybrook? Maybe Western would have them because they have a major neurology department there that takes neurology patients from all over the city. They saved my best friend's life actually. She had an aneurysm and was rushed there for emergency surgery. She made an amazing recovery and is back to work as a special ed teacher. I'll try them tomorrow. Anybody have any other ideas? |
You will want to look for LOWS on that test, as well as highs which indicate diabetes.
LOWS starve neurons, and indicate insulin resistance. This may occur long before diabetes occurs. It is also called "impaired glucose utilization". So get a copy of your test results. You can compare them to this: http://hypoglykemie.nl/gtt.htm |
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So this was only a two hour test? That is really only enough to show highs. Doctors do not attend to LOWS. A 4-5 hr is really necessary. Also helpful would be a fasting INSULIN done at fasting also.
But many doctors don't understand this test either. If you have hypoglycemia, and know this for a fact, you need to adjust your diet so the swings into lows do not occur. Lows starve neurons just like highs do. (highs mean glucose is NOT getting into tissues.). Lows are the same, glucose is not getting into tissues because it is not there. This is very stressful on the body. Don't expect most doctors to understand this. They have learned only to pay attention to highs. |
No I can't say I know for a fact that I'm hypoglycemic. I only suspect it. I do feel a lot better if I eat small meals frequently. i had a test for hypoglycemia in my twenties though, because I suspected it back then too and it was negative. (I don't know what the actual numbers were though.) i doubt that this is the source of my neuropathy.
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The lows on the testing don't show up clearly at 2hr.
3 and 4 or longer is best to illustrate them. |
Tests negative--more tests... sigh
Paraneoplastic antibodies (cancer-solid tumours) -- negative
Protein electrophoresis (white blood cell cancers, amyloidosis, ganulomatous diseases ,)--negative ENA( for Sjogren's) --negative Negative is good I guess--except if we're still missing something. And also it still leaves me with no answers and no treatment for the neuropathy. But it has improved again and I'm off the Neurotin. That is really what I want to see--improvement.(I was on a medication because the burning in my feet was getting really bad but it's settled down again. Tests being done this week: Ultrasounds of abdomen, pelvis Mammogram+ultrasound Blood tests for: CMV(Cytomegalovirus), Taxoplasmosis p-ANCA, c-ANCA --tests for vasculitis Serum A.C.E., serum lysozyme --(for Sjogren's) Urine Bence Jones Protein-- test for cancer Looks like this is going to be a long, difficult and possibly fruitless search. |
I might have cancer
I went for a mammogram/ultrasound and they found an enlarged lymph node. I have to go for a fine needle aspiration (biopsy). So I guess I might have paraneoplastic syndrome.
P-anca, c-anca, serum ACE and h.pylori are not back yet. Tests that were negative: toxoplasmosis, HIV, CMV, Bence-Jones protein, lead, pelvic/abdominal ultrasound |
goodluck Krista
Goodluck krista.. its frustrating to say the least..going on five years of tests and still no diagnosis. If you find a cause you are lucky.....Ive been told that many times after several elevated tests and no answers for the cause..we feel your pain. :confused:
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Thanks Shelbie. I'm going to continue to ask for more testing while I wait for the biopsy and results because there's a good chance it will be negative as well. I wish they would just test everything at once and get it over with. I have to keep waiting for negative results on a few things before I can get more tests. It makes for a long and frustrating process that way. Also the longer it goes on the less chance there is of recovery if a cause is finally found.
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Autonomic dysfunction
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Hello, I have some of your symptoms mainly neuropathy starting in feet progressing up to hips and gloves. Lovely tremors as well. After struggling with something off n on for 30 yrs they think they've found the answer, I might add numerous misdiagnosis. I did not see it mentioned on your list, but I may have missed it. I'm a bit familiar with sarcoidosis is, as I had a choice between that or lyphoma. It turned out lymphomas (for 12 yrs). Expecting to feel way better after chemo, per onc, I became 10x worse. Ok, ok now we get to hopefully good info. I just saw neuros at UVA. They say they believe I have antibodies attacking my system. Difficult to diagnose, they tell me drs would not know what to look for (I was thrown into fibro, neuro said no no no). Emg and nerve conduction would show as normal. As well as MRI and blood tests. They do need to do these tests to make certain and rule out simpler/diff things. So my apology if they've looked for this. If not you need a neuro from a teaching univ or one that specializes in movement disorders. There are six in USA. Treatment is infusions (between 1-4x month) people swear they can't function without them but 60 percent respond well. 2nd immunog. Therapy to stop antibody from attacking, and various meds trial n error method. The process is long. I don't know if this helps but on the off chance I can spare 1 person from suffering drs saying its in u head my life is well lived. I did smoke for a decade and started back again last spring so am curious as to your comment regarding such. However my probs started 8 yrs before smoking. Just my opinion, I say if you body is telling you something is wrong most likely it's right. Also I think it's best not to diagnose ourselves, I'm guilty of it, too many things out there. However if you think a diagnosis is wrong stand firm. My new upcoming diagnosis "clicks" with me as others did not. Except lyphoma and anemia. My "d" doctor/onc had me cancel neuro appt. saying he'd found my problem. Wishing you a safe holiday. Hang in there, I feel like tortoise and hare. Slow and methodically will win the race don't give up on search. Not easy for a redhead like me lol. Katherine |
Lyme
Ps.. Make sure you get the western blot for Lyme test. Not Elisa. Double check I often mix/reverse things. Symptoms are lymelike. Didn't see celiacs on your list. That's an easy blood test though only 80 percent accurate. Movement clinic can diagnosis not sure if reg dr or if neuro has to refer you. Best wishes! Kat
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Thanks Katherine. My Nerve Conduction Test is positive so fortunately, nobody thinks it's all in my head. I had the Western Blot for Lyme and it was negative. I was tested for Celiac disease about 6 years ago with both the blood test and a biopsy of my colon during a colonoscopy. It was negative. Other tests that have come back negative recently include
CMV, Toxoplasmosis, HIV, h. pylori (not the cause of my bad GERD) c-ANCA, pANCA--vasculitis test lead Bence-Jones protein (cancer test) Serum A.C.E. (Sjogren's) More tests that I will go for this week dihydroxyvitamin 1,25 D and 25(OH)D --For Sarcoidosis soluble IL-2 --for Sarcoidosis Mitochondrial Antibody (for Sjogren's) Lip biopsy --for Sjogren's heavy metals--toxin screen Serum Protein Immunofixation Electrophoresis--for autoimmune antibodies such as IgM vs MAG GD1b TS-HDS Sulfatide HH3 IgG vs Sulfatide and numerous others Katherine perhaps you should ask for this last one that I list here--the Serum Protein Immunofixation. It can pick up many autoimmune antibodies that might be the problem. These antibodies are produced by a white blood cell that is in excess like a benign tumour. They are not malignant but have an increasing probabilility of turning malignant as the years go by and can turn into some of the cancers that the Serum Protein Electophoresis tests for such as Waldenstrom's globulenemia. They are treated with the treatment you mentioned--ie IVIg, plasmaphoresis which remove them from the blood and also a drug I don't remember the name of. They say these treatments can work on about 1/3 of idiopathic neuropathies because about a 1/3 of them are caused by unidentified anti neuronal antibodies. Another 1/3 are probably unidentified paraneoplastic syndromes because a large proportion of people with idiopathic neuropathies get a diagnosis of cancer within 5 years of developing their neuropathy. I am still waiting for a biopsy appt for the enlarged lymph node. I read the ultrasound report and it says that I have numerous small lesions and complex cysts that should be looked at again in six months and the enlarged lymph node should be biopsied now because it's missing the fatty layer that usually surrounds it, called the hilum and that this is highly suggestive of malignancy. I've asked to be referred to Princess Margaret Hospital because they have a one day program there where you can get your biopsy in the morning and results and treatment plan, if necessary in the afternoon. Everywhere else there is a 30 wait for results which can be very stressful. If the biopsy of the lymph node is positive, very likely at least one of the small lesions are the tumor associated with it, and this will be at least stage 2A cancer due to invasion of one lymph node. Or the lymph node could be a metastasis from cancer at another site. They may want to CAT scan my whole trunk area to look for other cancers. At that point, I'll be willing to take the risk of exposure to the equivalent of 1300 chest X-Rays in radiation because not finding the metastatic cancer could be more dangerous. I hope the plus side of finding cancer might be that treating the cancer will help the neuropathy due to it being paraneoplastic syndrome. I think your experience with treatment for lymphoma is probably rare, although I suppose the chemo itself could worsen neuropathy. But from what I've read, if it's paraneoplastic cancer treatment should help. There is still only a 20 percent chance that the biopsy will be positive though so we are continuing to search in the meantime. I've asked my PCP to refer me to Dr. Peter Ashby at Toronto Western because the Neuropathy Association says he's the best in Toronto for Peripheral Neuropathy--an excellent diagnostician and very compassionate. She says she has to try to refer me to his private office though as Western may not allow me to switch from the neurologist that I've already seen at their movement disorders clinic to another neurologist. I also see the second neurologist I saw at St. Joseph's Hospital again in February for a repeat Nerve Conduction Test and EMG and follow-up at which point all of the current testing should be finished and I can ask him where we should go from there if there is still no resolution to the problem. He is getting all the results of all testing sent to him. Right now, I actually think the neuropathy is a bit better. The motor symptoms are completely gone and the parasthesia and burning are a bit better. So I'm hoping perhaps that it was a stress reaction to the MST. I was quite terrified of it and they say that trauma can be as toxic as an organophosphate poisoning. Your own cortisol from stress can poison you. Perhaps I just need to recover from that and all this testing for dreaded diseases is not really helping my stress! We'll see I guess. |
" I was tested for Celiac disease about 6 years ago with both the blood test and a biopsy of my colon during a colonoscopy. It was negative."
The above is not sufficient testing for celiac disease. It can occur at anytime in a patient's life, and the biobsy of the colon has nothing to do with celiac disease, which is a disease of the SMALL intestine. Also, there appears to be an ~ 30% false neg rate on the blood tests. Good luck. |
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Hello
Hi krista
Any luck yet on finding out what's going on medically? Do hope you're doing better. Katherine Ps.. I'm still on limbo land |
I feel for you I can not get a straight answer myself. I begged for biopsy or genetics test and was told it was not nessecary yet. I want to know what is wrong as well. I have done multiple test and waiting on Urine for Heavy Metal Poisoning and blood. After that all I have left is the biopsy or genetics test.
I hope you find your answer. |
Krista -
I have read most of this thread, but likely not up to date as the last seem to be in late 2012. Just a suggestion, but have you had any MRIs with contrast? if so, there is a possibility that you have retained some of the contrast material - the element Gadolinium. This is tested only rarely, and there are a couple different avenues to have it tested. If you have retained Gadolinium, which is paramagnetic, it might also explain the problems you had with the Magnetism Therapy trial. I am Gadolinium toxic and have otherwise cause-undiagnosed Small Fiber Neuropathy (SFN) with many of the same symptoms. Since heavy metals are thought to be a cause of SFN I think it is likely the cause. So far I have not found a way to positively determine that this is the cause. I have lots more information and other places to refer you, but I think it is best to have a short post to see if you or others are interested in hearing more about Gadolinium Toxicity as possible cause for Peripheral Neuropathy. |
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