Discussions By Condition: I cannot get a diagnosis.

Neuro is giving up- at my wits' end!

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: sylvie
  • May 26, 2007
  • 00:54 PM

:( I've been seeing the neuro for about 9 months now, and she's about to refer me to a Rheumatologist. Seems now to be humoring me. In the last year, I've been given 2 MRI's, had an EKG, EMG/NCV test, had my blood sugar tested, all kinds of blood work-ups, been in the ER as the whole left side of my body went numb, am now seeing a Lyme Literate dr to at least rule out chronic Lyme. Been to an allergist, been tested for Celiac, Lupus, MS, RA, you name it. Neuro can't figure it out, says I don't even have Fibro. I'm 32, and my current diagnosis is "Polymyalgia Rheumatica", which is typically diagnosed in people over the age of 50. :eek: (So frankly, I'm not buying it!) I am anemic, though. And I have 3 nodules in my thryoid (one of which will require a FNA).

Here are my current symptoms:

burning, pins & needles on various parts of body
sensitivity to bright lights & sunlight, causing headaches, migraines
over-active bladder, trouble completely emptying bladder
frequent diarreah (with nausea) -(sometimes weekly)
muscle cramps in legs, feet, forearms, hands
arthritis? in all major joints
frequent dizziness
hot flashes
left ear sensitive to loud noise
jaw occasionally tender to touch, and some random pains
bone pain
skin on hands extremely dry
year-round allergies, frequent sinus infections
heart palpitations

(For those with the time)
My time line of issues:

1983-84'- scabies

1986/87?- tick bite on back, a while later, swollen lymph node under left arm

Pre 1998- from jr high, on- “growing pains” in legs, hip pains (joints popping), incident of Fifth Disease

1991-92- frequent (sometimes severe) gastro issues. collapsed at school- feet gave out. rash on back of left thigh (circular).

1993-94' - chronic bronchitis. Given amoxy, then erythro to get rid of it.

1995-'96- spot removed from back, near area of tick bite. nurse mentions high blood pressure.

1996/'97- got really sick. bad sore throat. could barely talk. could barely hear myself talk

approx 1998- odd sensations in arm, slight pain, tingling, pins & needles

April 1999- chest pains (left side), heavy sensation on chest w/pains down left arm. sharp stabbing pains. (chest xray, EKG normal)

Nov 2000- severe pain in left arm. weak, painful to lift/use arm. sensations lasting for weeks.

Aug 2001- tested for carpal tunnel (none), normal EKG & chest xray.

Aug- April '02
(first pregnancy)- circular rash on back of left thigh. (same rash as before). other rashes on chest and abdomen. Dr mentions thyroid levels "off". Issues with blood pressure?

January-Sept '03
(second preg.)- shooting pains down side of right leg, when laying on left side. sciatic nerve pains down right leg, heart palpitations

Sept '04- big toe on right foot partially numb, pins & needles. has remained. frequent/weekly diarreah (with nausea)

March-April '05- pain in right side of ribs, back area (lasted weeks)

2006- spasticity in left thigh. breast pain. sono & mammo- spot found is "normal"

(Aug-Dec '06)- electrolytes, kidney function, blood count, ESR normal. EMG/NCV normal. tested for Lupus, MS, had MRI- normal. (some bone deformity noted at base of spine. "birth defect").

March-April '07- knee pain, warmth. tested for Celiac (neg.). pain in left elbow, shoulder. subsided, moved to other side. Pain in knees. spasms/bloating/gnawing in upper abd. Tightening in neck and shoulders for 3+ weeks. Pain in right side of back, in ribs.

April 23 '07- cramping in left thigh (and abd. spasms). Entire left side of body- pins & needles & buzzing. ER dr says Anemic, not sure what happened?

April 26 '07- Cramps in right thigh and calf, and in left foot.

April 27 '07- dizziness, with wierd feeling in ear (like being in a fishbowl)

May 4 '07- tested for H. Pylori (negative). MRI of c-spine, w/ & w/out contrast. Shows degernation, mass in thyroid.

May 7 '07- thyriod Ultrasound- 3 nodules. 2.5cm, "solid". Others 3mm each.

May 8-9th '07- frequent twitching at base of right thumb.

May 10 '07- LLMD. notes prev. exposure to EBV, and once had mono. on 500mg amoxy, 2 pills 4x/day.

May 22-23 '07- spasm or cramp?, in right forearm-wrist & right foot, in arch. (on may 25, spasms lasting 1 min.) occurred approx every 7 minutes.

:eek: If you bothered to read any of that, I appreciate it! LOL The last time I posted my symptoms in a simliar forum (re: undiagnosed issues), it was suggested I be tested for Lyme. As I said, I've gone to the LLMD, who said that some symptoms do sound like Lyme, but others do not. So there was additional testing, and I'm on the antibiotics to see if it helps, and I guess if I herx. But if I don't have lyme, I don't know what the heck is going on! All of this due to thyroid? Or what? I'm at the point (again) where I'm tired of going to the dr to figure this out. Tired of wasting my money, and being told I have NOTHING wrong with me (except for now the thyroid?).:(

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19 Replies:

  • Sylvie Wow, its not been a good few years for you. Hopefully you will have an answer on the Lymes issue soon. It could be possible that you have more than one illness and the symptoms are not all linked. Have you had your b12 checked? I would hope so, but you didn't mention it. Its UNBELIEVABLE what a defiency in a vitamin b can cause. There is a thread on this subject, Vitamin B12 deficiency is commonly misdiagnosed, by Sally Pacholok. I sugest reading what Sally has to say on it, if you have not already. This can look neuological. And finally unfortunatly Neuro issues sometimes take years to diagnose. The symptoms come but the disease has not fully shown it's ugly head. Take Montell Williams for example his MS symptoms started 20 years before DX, and at one point a DR said "Maybe MS? No your in perfect health and fitness, you can walk" I know it doesn't help or make your situation better. Hopefully others will have more input for you. Take Care! Cala
    Cala1234 57 Replies Flag this Response
  • The Lyme dr told me to take a B vitamin while on abx- so I'm currently taking B-50. Nobody has told me that I was deficient, but hopefully this would help somewhat? My mom has MS, which is why I was concerned, given all my symptoms. (And there are a lot of other autoimmune issues in the family). However at this point, the neuro doesn't feel MS is my issue- no lesions. The LLMD doesn't think it's MS either. The only dr who thought it sounded like it was the ER doc, when I was in the hospital a month ago. :confused:
    sylvie 31 Replies Flag this Response
  • Sylvie - just noticed we are in the same state. If you are looking for an alternative doc in the state I personally know some that are pretty good. I am a chiropractor that does alt care (here in OH we can do just about all except major surgery and use drugs). If I knew the general area you are in the state I can refer you to some alt docs - DCs, MDs, DOs - whatever you feel suits you best - that can look at the problems differently and perhaps be able to help you effectively.
    Anonymous 42789 Replies Flag this Response
  • Hi Sylvie,Two things about most doctors: they like to tie every symptom neatly into a single problem, and they like the cause of the problem to be something they can look up in a textbook.Given those two things, I have two items of advice...well, one is advice, the other is more of a possibly helpful story of something I went through.The advice is to not let any doctor rule out one diagnosis only because of the existence of some symptom that they know would never show up in that disease. So just because Lyme may not have one of your symptoms, that wouldn't mean you don't have it, for example (not saying you do or do not have Lyme, just using it as an example since it is a possibility). If you have two (or more) problems going on, you will not have a clear-cut set of symptoms.The story goes like this...I had nodules on my thyroid for 10 years before I finally got it removed, along with the nodules. I got sick a lot during that time, but I got sick a lot as a kid, so didn't think much of it. For the last two years before surgery, I had some milk coming from my breasts. This particular symptom freaks doctors out, since it can come from a brain tumor. They did scans, no brain tumor. No one could figure out the reason for that symptom.When they did fine needle biopsies of the nodules, they didn't find much to say, so we left it. Eventually, the thyroid was getting so large it looked like a golf ball in front of my throat, and was getting in the way of swallowing. Only because of the size, did my endocrinologist finally decide it needed to be removed.During the surgery they did a biopsy, found that the nodules growing on my thyroid were each a different color, with different compositions. The quick biopsy in surgery identified 4 of the 5 kinds of cells they found in those nodules. But one cell they hadn't seen before. After the surgery, they did 2 more biopsies, could not identify this cell. They sent the biopsy slides off to some specialist in semi-retirement, living in Europe. (I'm in the US.) The specialist said that there was nothing there to suggest cancer, so my doctors said, "Fine, not cancer, we won't worry about it."Two weeks later, the milk in my nipples cleared up. :cool:I asked the surgeon and the endocrinologist about that, and they both said they didn't know why that happened. I asked them if they were planning on writing that up, publishing? They found a cell that no one had any previous knowledge of, right? Wasn't that medically newsworthy? Shouldn't other doctors know?Nope. No one wrote it up, let alone published.Since then I haven't been getting sick (even just regular colds or the flu) anywhere near as much as I used to. Much healthier. Is that due to the stuff they took out of my body, along with the thyroid gland? I'll never know. But I think so.So the moral of the story is this: if you have stuff growing on your thyroid, and they can't tell you exactly what it is, there might be something in there contributing to your problems, even if no one could say exactly how. Best,Shula
    Anonymous 42789 Replies Flag this Response
  • Hi Sylvie,You sound a lot like me, except my main symptom was fatigue. As it turns out, after eight years of searching, I have a rare form of Hashimoto's thyroiditis called Hashimoto's encephalopathy. They are both autoimmune diseases. The nodules in your thyroid may be a clue. I'm just speculating, but the dry skin, bone pain, pins and needles, cramping may indicate a subclinical hypothyroidism or sick euthyroid. On top of this you'll have episodes where your thyroid dumps out too much hormone, giving the palpitations, hot flashes. The encephalopathy part is the funnest, with the headaches, sensitivity to light, and lightheadedness. Don't know what causes the bladder part, but I'm on ditropan for mine. Typically, the thyroid hormone tests are normal, but your thyroid ANTIBODIES will be elevated. Be forewarned, this is rare and not widely accepted yet so most doctors don't know about the encepahlopathy part of the disease and won't usually test antibodies unless hormone levels are off.If this isn't your answer, do not lose hope. Neuro-esque things can take a long time to diagnose, but sometimes they do turn out to be rheumatological (autoimmune diseases can wreak havoc on your nervous system). Rheum might even be willing to test your thyroid antibodies if you find someone open-minded.Good luck,Elke
    Anonymous 42789 Replies Flag this Response
  • Sylvie RE B-12: I do not think the "B-50" you referenced will help if you in fact defecient, as if you are truly defeicent you would need high doses in the form of shots to build your supply back up. It may scew the results of any blood test, but I again do not know (I tried seaching B-50 in her thread, came up with nothing). You might want to read Sally's post (she has a BSN), in tell us your med story, and ask her, she answers the questions daily. Personally I started reading the post, and was intrigued after about a page, and didn't stop (read almost the whole thing). I think if you can relate, you too will be intruiged. Cala
    Cala1234 57 Replies Flag this Response
  • Cala,very good points on the B12 - I am going to get Sally's book as I think it would be very helpful in helping my patients get a diagnosis. Sylvie,Are you interested in trying an alternative, more holistic approach to treating your illness? DOM
    acuann 3080 Replies Flag this Response
  • I would not mind at all being on natural ways of treating my issues, so long as they are effective. :) I just feel that I really need to know what I'm dealing with first, because I don't want to be taking supplements or whatever, for the sake of taking them- anymore than I want to be taking prescription meds just for the sake of taking them. My regular dr told me right off that I had Neuropathy (she was not any more specific than that), and prescribed me Neurontin. All it did was make me sleepy. She was going to put me on Lyrica, but decided instead to refer me to a neurologist. The neurologist put me on Topamax, which (at 25mg/day) did seem quite effective in holding off most of my nerve pains and frequent headaches. Problem is that it didn't help my arthritis issues, nor chest pains. But after lots of various tests, she didn't know what was wrong with me any more than the regular dr did. So I'm asking myself what the heck are these meds really for? Can I just live with these pains til I find a real diagnosis, and then find the appropriate med to deal with it? (med, supplement, whatever). The Topamax suddenly seemed ineffective, so I went up to 50mg. However, my body didn't like that, so I went off of it. At that point, I was prescribed Elavil. Honestly, not only did my body seem not to like that any better, but all it did was make me really sleepy at night. (Ok, I need sleep. But what is the point of taking it otherwise?)When I was in the ER last month, the dr really only ran tests to check various levels of things in my body- I would assume magnesium, potassium, iron, etc.. I am not sure of anything being too low or too high except for the iron, which I'm now taking massive doses of. As for B-50, according to the bottle, these are the doses of B vitamins it has per pill:B-1, 50mg (3,333%)B-2, 50mg (2,941%)B-6, 50mg (2,500%)B-12 50mcg, (833%) I've had blood work done by a few dr's in the last yr, and would have hoped that somebody would tell me up front what all I was lacking in my body.. but I have learned that whatever is irrelevant (to them), will be left for me to figure out on my own. :(
    sylvie 31 Replies Flag this Response
  • Sylvie - I agree more than 100%. Treating symptoms either with drugs or lots of high dose supplements is only treating symptoms. And symptoms are produced by something or some things. The neuropathy has to be from something malfunctioning in your body. As do the other symptoms. I feel a doc's job is to keep searching until a cause or causes are found. We use different ways to test now, instead of blood tests. There are some excellent computerized assessments to help see what body systems and parts are the most stressed. I do know docs around the state, as I travel and use the above computer in some other docs offices. Know some that I really trust that have patients as their priority in Lancaster, Coshocton, West Liberty, Columbus, Canton, Marietta, Parkersburg WV and a few other places. I am based in Zanesville. Since regular medicine can't figure it, looking at it in a different way may give some good clues. Hope I can help.
    Anonymous 42789 Replies Flag this Response
  • (I'm in central OH) :)I really do want to get to the bottom of things. Some of my symptoms, I'm told could just be aging. Which I hate to think about at 32, but I guess I have to. I'm just not aging gracefully, I guess. LOL At this point, I wonder how much of my stomach issues are a factor? I haven't had a scope yet, so I don't know. I also wonder what is happening with my thyroid (waiting to see the Endo.). Is that making my body crap out on me? Do either explain the nerve issues? Is *some* degeneration in my c-spine the problem? Is the arthritis just aging? And aside from the thyroid and abdominal stuff, (and the chest pains which I think are important, and heck.. never pains can't be normal, can they?!) I ask myself if I really need to a see a dr. :p
    sylvie 31 Replies Flag this Response
  • To blame it on "aging" is ridiculous. Unfortunately many regular docs think we are supposed to fall apart as we age. It does happen quite a bit, but just because it is common does not make it normal. The stomach issues are, IMO, a large factor. Even if you eat tons of organic food if the stomach can't process it properly then you are malnourished. Improving and correcting digestion is critical. The thyroid is part of a number of hormonal glands that act as a team. Point is that you may have symptoms that are caused somewhere else but seem or feel like thyroid issues. Regular docs often only test for the TSH which is actually from the pituitary. Other organs can also effect the thyroid. An example: too much "fake" estrogen found in many chemicals in our environment can stress the liver from its job to recycle hormones. This liver stress can bring the thyroid down. It then appears as a thyroid problem when the real cause is from somewhere else. So treating a thyroid in this case is not getting to the bottom of the barrel. Things do not happen just by themselves. There are always causes. Typically arthritis is not just aging. Most arthritis (not rheumatoid, that is another story) occurs after an accident. And it may be years later. Any history of auto accidents, bicycle wrecks, falls, etc earlier in your life ? Stomach may be connected to nerve issues as poor digestion can lead to the nerves being built out of "junk" parts. Nerves (most of them) have a type of insulation made mostly from fat, and if you can't digest fat correctly, you can't make the insulation right. As I said, if you want a natural doc I can connect you with one, especially in central OH.
    Anonymous 42789 Replies Flag this Response
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  • Have you ever or could you be exposed to a neuro toxin? Many of the symptoms you describe mimic many symptoms from such exposures, especially when it is low dosage over extended time. Are any of your immediate family members ill? Neuro toxins comes in many forms, such as molds, gardening chemicals, bug sprays, pest control sprays, household chemicals like chemicals used for refinishing furniture etc. It is worth considering ! good luck to you, I hope you find an answer soon !
    LindaF 1 Replies Flag this Response
  • To blame it on "aging" is ridiculous. Unfortunately many regular docs think we are supposed to fall apart as we age. It does happen quite a bit, but just because it is common does not make it normal.The stomach issues are, IMO, a large factor. Even if you eat tons of organic food if the stomach can't process it properly then you are malnourished. Improving and correcting digestion is critical. Yes, Yes, Yes! After the birth of my daughter at age 38 I just fell apart...had lots of tests done and nothing was really found, except an obviously compromised immune system. Acupuncture, NAET (Nambudripad Allergy Elimination Technique), Eating well, and EXERCISING: all of these things have given me my life back, and I am healthier now at 40 than I was at 35! 32 is YOUNG, and you are ill, not just aging. Digestion is the key to good heatlth. There are many reasons you may be inbalanced. Tradtitional Chinese Medicine works just brilliantly with digestive disorders... I have treated patients with IBS, chronic constipation, hiatal hernia, acid reflux and much more. Sometimes just simply taking a good quality PROBIOTIC can help so much. look for a brand with several strains of beneficial flora, like acidophilus, rhamnosus, l brevis, bifidum bacterium, and others. Please try to get over the need to have a complete Western Diagnosis before seeking alternative treatments...I am not saying to discontinue further testing, but get yourself to a DOM who can get you back on the right path and feeling better. If I had waited for this, I would still be completely miserable and in pain and discomfort every day. Acupuncture works! Articles are in Reader's Digest magazine - even OPRAH had a show on it. I predict it will become a mainstream treatment within the next ten years. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Well, this might not explain all of my health problems, but I did find out on Thursday that I tested positive for Lyme. Who knows how long I've had it, but I feel it's most likely I was infected *at least* as far back as 1996-98. I know I was bit by a tick in 1987, but not sure if that tick was even infected. :rolleyes: In any case, at least that's something to go on.. I still need to get my scope done (on the 15th), and then see the Endo re: my thyroid nodules. And hope that I get some more answers. :)
    sylvie 31 Replies Flag this Response
  • I can say I certainly share your frustrations as I experience many of the same symptoms you have listed. I became ill about six months ago with symptoms such as chronic headaches but of a new type as they start out with a tingling sensation on my scalp and sometimes come on and go away rather quiclky and other times last for several days. I have burning/tingling sensations that come and go in my face and have a small circular rash (that noone seems to see but me ) on both the left and right cheeks that burn and tingle often. I allways feel out of energy and I used to be very, very active. I also have chronic abdominal pain that is mostly on my left side but rotates around and is sometimes on my right. I sometimes have really bad throbing stinging pains in my left lower abdomen. I also experience tingling and burning senasations throughout my entire body that is really spuratic and have been having numbnes in my arms, legs hands and feet that comes and go. Like you I have seen many specialist such as a Reumatolagist where they gave me CT scans and taken much blood and did not find anything. They put me on Zantac for the abdominal pain but I think they are way off base on that one. I also have frequent heart palpataions which I have had on adn off for over 10 years but recently the pattern of them have changed. They used to come on suddenly where my heart would just speed up really really fast and would last for anywhere from 1 to 30 min. I would feel really drained and like my circulatio was being cut-off. Lately they have changed to more of a irregular heart rythem as they come and go really fast but are almost like my heart skips a beat instead of just beating fast. Like you I am young at 36 and just dont understand whats going on and am realy frustrated with the medical system as they can't find anything and frankly dont really seem to care. I recently got a case worker through my insurance to help but so far I havent really seen any progress. the only thing they have found so far is that my B12 levels were low which is strange because I had the B12 test a few months ago and they were fine. I have been receiving weekly B12 shots for 3 weeks now and dont feel a bit better. I am a male so I really dont have the hot flashes but share just about every other symptom you mentioned. Sorry I am not able to shed any light on whats going on with you but did want you to know that others share your pain and frustration.
    Bstyck 5 Replies Flag this Response
  • Not sure why they are telling you it's not Fibromyalgia.Go to the all free website www.FibroFix.comRead the Twenty Questions. Does it sound like you? Then read the Symptoms. Testing, Diagnosis, Treatment and Tricks & Tips will tell you what to do and why. This is the most effective treatment method in the world for Fibromyalgia symptoms. there is free help by email or phone, too - contact info is the left side of first page.Anne HillebrandOrlando, FLFibromyalgia's Medical Maverickannehillebrand@bellsouth.net407-925-4139
    Anonymous 42789 Replies Flag this Response
  • Perhaps another doctor would diagnose me with Fibro, however, it's likely that same doctor would never have run a blood test through the Igenex Lab to check for Lyme. (Especially not after a basic titer test came up negative).Your website is very informative, however I'm curious how fibro is often mistaken with Lyme, if blood tests can actually show that somebody has Lyme in their body? There is no blood test to prove a diagnosis of Fibro, correct? I'm not dismissing your site, but I thought that part was interesting.
    sylvie 31 Replies Flag this Response
  • Sylvie - lots of confusion due to most docs being unaware of Igenex or Bowen labs. Traditional labs - hospital, local, etc - use tests that generally are poor to useless at finding Lyme's. And of course the doc trusts the lab and its findings. And won't really listen to patients well. I had a patient with a history of trauma and in almost late stages of Lyme. All sorts of weird symptoms. We tested him with an Electrodermal Screening Machine and suggested Igenex. I told him the local hospital would have no clue to effectively test him. He went to the local hospital and when they told him not he peeled out. His dad had been a patient previously - local county law officer - but I legally could not tell him about his son's condition. I felt like calling the local lab and having an interesting discussion with them, but they would not have really cared. They think if they can't measure something, it can't or doesn't exist.
    Anonymous 42789 Replies Flag this Response
  • To blame it on "aging" is ridiculous. Unfortunately many regular docs think we are supposed to fall apart as we age. It does happen quite a bit, but just because it is common does not make it normal. .I agree with this 100%:)
    Eatafruit78 960 Replies Flag this Response
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