Discussions By Condition: I cannot get a diagnosis.

End of my rope........

Posted In: I cannot get a diagnosis. 92 Replies
  • Posted By: richedie
  • February 16, 2008
  • 02:05 AM

Hi all,

I am a new comer to the board and have no pace to turn at this point.

I am sorry, but I will try to keep this as short as possible. :(

Back in October, I had what I thought was a bad cold......then, I started feeling tingling in the arch of my right foot...then over the days I noticed the ball of the same foot hurt as I walked, then began limping. I would also get tinlging in the feet that would spread up the lower legs to about the knee at times. I would wake up some night with a leg numb from the knee down...and some night with a knee locked and painful, both would clear quickly though.

I would get chills, unable to tolerate cold weather, felt nauseous a lot, loss of apetite and as a result lost about 20 lbs since October. Started having floaters in my right eye, and some aches in the right eye. Some nights my right foot would hurt soooo bad I could not sleep. Some nights I would feel like my blood was bubbling and I would feel shaky and weak. I would get odd muscle trembles and tremors. My hands and feet would get ice cold at times!

After about two weeks or so...some of the symptoms started to get better but the feet were still bad...some days were great..walking, exercising...felt good...other days I would limp around in pain. I also noticed trouble swallowing during most of this time.
Some times I had frequent urination.

I saw plenty of doctors and specialits to not avail. We looked for everything, Lyme, MS, Celiac, Ankylosing Spondylitis, you name it! I am even seeing a podiatrist in case this is anxiety from bad feet!

Along with this came depression and anxiety.......

Still no relief and still seeing doctors!

Still, to this day..after seeing a chiropractor (thinking it may be pinched nerves) I still limp around, pain in my right foot, tingling in both, feel nauseous some days, shaky, trouble swallowing on some, floaters in my eyes, once in a while, the right hand still gets cold as do feet and numb feeling at times.

You name the doctor..I have seem them with the exception of an endocrinologist and vascular specialist.

They found an abnormal protein band and now I am seeing an oncologist. Ugh!

I can't seem to gain back my weight either and workling out makes me shaky and sometimes sick. Always seems worse as the day goes on and I am best when relaxing and/or sleeping.

Any thoughts? I can't stand it any more.

Thanks!
Rich

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92 Replies:

  • Was the abnormal band in your blood or spinal fluid? If it's in your blood, hopefully the hematologist/oncologist will figure it out and will check a differential white count and look at your peripheral blood smear...Did they check B12 levels? Lyme? Lupus?How about thyroid antibodies? there's a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy which might explain your symptoms, and most people have normal thyroid hormone levels- it's only the antibodies that are high.Have they done a bone scan at all on your foot?I'm not sure what it could be.I hope they figure it out for you soon.
    Anonymous 42789 Replies
    • February 16, 2008
    • 09:28 AM
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  • I was thinking diabetic neuropathy and hypoglycemia. So maybe an endocrinologist would be wise. Diabetic neuropathy:Symptoms depend on the type of neuropathy and which nerves are affected. Some people have no symptoms at all. For others, numbness, tingling, or pain in the feet is often the first sign. A person can experience both pain and numbness. Often, symptoms are minor at first, and since most nerve damage occurs over several years, mild cases may go unnoticed for a long time. Symptoms may involve the sensory or motor nervous system, as well as the involuntary (autonomic) nervous system. In some people, mainly those with focal neuropathy, the onset of pain may be sudden and severe.Symptoms may includenumbness, tingling, or pain in the toes, feet, legs, hands, arms, and fingerswasting of the muscles of the feet or handsindigestion, nausea, or vomitingdiarrhea or constipationdizziness or faintness due to a drop in postural blood pressureproblems with urinationerectile dysfunction (impotence) or vaginal drynessweaknessIn addition, the following symptoms are not due to neuropathy but nevertheless often accompany it: weight lossdepressionTop] Types of Diabetic NeuropathyDiabetic neuropathies can be classified as peripheral, autonomic, proximal, and focal. Each affects different parts of the body in different ways.Peripheral neuropathy causes either pain or loss of feeling in the toes, feet, legs, hands, and arms.Autonomic neuropathy causes changes in digestion, bowel and bladder function, sexual response, and perspiration. It can also affect the nerves that serve the heart and control blood pressure. Autonomic neuropathy can also cause hypoglycemia (low blood sugar) unawareness, a condition in which people no longer experience the warning signs of hypoglycemia.Proximal neuropathy causes pain in the thighs, hips, or buttocks and leads to weakness in the legsFocal neuropathy results in the sudden weakness of one nerve, or a group of nerves, causing muscle weakness or pain. Any nerve in the body may be affected.Top] Neuropathy Affects Nerves Throughout the BodyPeripheral Neuropathy toesfeetlegshandsarms
    rad-skw 1605 Replies
    • February 16, 2008
    • 11:41 AM
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  • Yes, they checked my thyroid levels (not sure how!), checked for Lyme, Lupus, MS, a bunch of things. All of my blood work looed so good each time they ran tests. One thing I noticed was my glucose was high but they said nothing of it and they said they didn't think it was diabetes. I would find it tough to believe it is diabetes since I have been a health nut for most of my life, very active, etc. I always thought diabetes had more to do with weight and general health? Maybe I am wrong? The Autonomic thing is interesting but who investigates that? I saw some good rheumatologists but nothing. I think I have heard of the Hashimoto's disease in my book on automimmune disease. I am seeing a good rheumy in March so I will bring this up for sure. I don't know about the abnormal protein band although I am seeing a good hemotologist/encologist this Monday for a bone marrow biopsy and XRays. A podiatrist mentioned I should have a full vascular work up but I am not sure who would do that. I do get cold (to the touch) hands and feet. I guess the pain in my right foot when I walk had me believing it was mechanical and I am still wondering about this. I feel so much better after sleeping...sometimes I lay in bed in the morning and feel normal again. I mentioned some sort of Palsy or small nerve condition to the neurologist and he looked at me kind of interested and confused as if that is something not easily determined but I have read about tests for this and similar conditions. Two weeks before this all started, I had Ulnar nerve entrapment surgery. Thanks for the opinions and thoughts!
    richedie 74 Replies
    • February 16, 2008
    • 02:50 PM
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  • How high was the sugar? You might want to have them keep an eye on your sugars and make sure they are okay.The kind of diabetes you were probably thinking about is Type 2 diabetes. It used to be called adult onset because it used to only strike adults, but with the obesity epidemic, kids are getting it too now. It's associated with being overweight and a sedentary lifestyle, but there are some genetic factors in it too. it's also known as insulin resistant diabetes since the person becomes resistant to insulin, but usually can still make it.Type 1 is typically thought of as juvenile diabetes and is the autoimmune type where your body destroys the cells in your pancreas that make insulin. It's also called insulin dependent since you need insulin shots once those cells are gone. It often runs in families. While it usually strikes kids, I recently saw a story about a woman who got it in her 30's. So, I guess it's possible to get either type when you're older. Also, if you have one autoimmune disease, you are at risk for others.I'm glad you're going in to rheum next month. I hope they will screen for diabetes (by blood sugar) and check into HE with thyroid antibodies. Most doctors have never heard of HE though and are trained only to check antibodies after your hormones are off.Hopefully they will test for all the exotic rheumatological diseases that could produce your symptoms or steer you to a different specialist if needed.Sorry you have to go through this.Hopefully you will get an answer soon.
    Anonymous 42789 Replies
    • February 16, 2008
    • 08:27 PM
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  • probably need to hit up the endocrinologist and have him run a bunch of hormone/glandular tests...were you screened for gout? I have had two paralyzing attacks in each foot...ouch...they missed that diagnosis and just called it arthritis. Soon as I took this herbal supplement "goutrol", the pain let up.
    Monsterlove 2921 Replies
    • February 16, 2008
    • 08:53 PM
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  • I also thought diabetes.
    Anonymous 42789 Replies
    • February 17, 2008
    • 08:50 AM
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  • Thanks everyone, I am having a bone marrow biopsy on Monday. :( I will have the docs check for HE (if possible) and also diabetes. I'll have to grab my results again to see the glucose levels. This is frustrating.
    richedie 74 Replies
    • February 17, 2008
    • 05:15 PM
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  • Thanks everyone, I am having a bone marrow biopsy on Monday. :(I will have the docs check for HE (if possible) and also diabetes. I'll have to grab my results again to see the glucose levels. This is frustrating. I almost thing I could have some sort of circulation issue because along with the tingling comes cold hands and feet....plus my red blood cell counts have been dropping along with the hemoglobin and hemotocrit levels. My right eye is inflamed again and aching.....feels like there is something over my eye like it is wrapped in something and my right eye was twitching this evening.
    richedie 74 Replies
    • February 18, 2008
    • 01:33 AM
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  • Thanks Blaze.... I'll have to join that site - thanks! What part of the country are you in? I am in SE PA where Lyme is a big problem and we live near Valley Forge...National Park and we also spent a week in the Adirondacks at the end of the summer when this all started. Both my primary doctors said I did not but like you said...they used Quest! Quest also missed my B-27 antigen as well. They found the protein band...could that be related? I am seeing the hemotologist/encologist tomorrow due to the protein band and I am going to mention the Lyme thing . He had me tested at Quest as well. Could Lyme cause tingling in the feet? Cold feet? Pain in the feet enough to make me limp? The floaters are a pain, pain in the foot, tingling, swallowing, weird teeth issues....all a major pain. Why can't I find no bite mark or red circle? -Rich
    richedie 74 Replies
    • February 18, 2008
    • 03:58 AM
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  • I too think you need to go and see an endocrinologist, I too was thinking maybe some kind of diabetic problem. ... Lyme can cause all kinds of symptoms and one may not even notice a mark. ........... "workling out makes me shaky and sometimes sick. Always seems worse as the day goes on and I am best when relaxing and/or sleeping." Chronic fatigue syndrome can manifest as weakness and sickness on exertion and cause weird feelings etc due to sympathetic nervous system dysfunction. ........... Please get back to us, I'd like to hear what that protein band turns out to be.
    taniaaust1 2267 Replies
    • February 18, 2008
    • 11:09 AM
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  • i thought diabetis too. Anyone can get type 2 diabetis, even if not overwieght or it doesnt run in the family history. The fact that your glucose tested high, is a good sign that this is what you have
    prone2injury 28 Replies
    • February 18, 2008
    • 00:55 PM
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  • Thanks everyone! I think now I need to mention diabetes to my doctors again! Why would they miss that though? Just seems weird since I have always ate well and exercised. Why would my docs have missed this? My glucose is high...but normal range. I also will look into a vascular specialist and endocrinologist. I'll ask my hemotologist today since they are checking on my abnormal protein band. I am also trying to find a doctor in the area well versed in Lyme and getting the correct tests. Thanks.
    richedie 74 Replies
    • February 18, 2008
    • 02:34 PM
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  • Blaze, Thanks for all the Lyme info and I didn't realize it was so hard to detect. My primary doctor kind of told me to forget about Lyme for now since my tests from Quest came back negative 3 times. Now, I am concerned based on what I have read and that others have had multiple negative tests as well! I had a bone marrow biopsy on Monday and some XRays and I see the hemotologist/encologist next Wednesday to get the results. I am hoping this comes out to be nothing and not cancer of some sort. The most troubling symtoms are still with my feet and sometimes legs. Swallowing has been pretty good lately, but my right eye canhave lots of floaters at times and other weird things. I am seeing the eye doctor this week.*I have been seeing a chiropractor and she does the neck adjustment which freaks me out! She has been helpful with so many other things like getting me tested for metal toxicity and helping me if I want to get delayed food testing, etc.....that I feel bad leaving her practice but the neck thing is scary. I have mentioned this to friends and my wife but I thikn people thikn I am crazy with this. I am wondering if the neck adjustment contributes to the swallowing issue? I also saw a podiatrist again yesterday and he thinks my feet issues are mechanical so I am having orthotics made in a few weeks. My arches are so high, they think this could be metatarsalgia causing the sharp pains in the ball of my foot when I walk and the tingling, numbness in the foot(feet). Weird how this can radiate into the entire foot and send sensations up the leg. Could everything else be anxiety? My wife and I agreed...if we learn nothing new with the hemo/encol next week, I am going to aggressively look into Lyme. I am surprised it is so hard to find a local doc for Lyme and who also takes health insurance. That is odd. Oh, and I have had a lot of unexplained cavities! Plus, I can't gain the weight back I lost since October. My symptoms came on strong like a virus! Chills, tremors, numbness, pain, then things settled a bit. I dropped from 207 to 188 and only got back to about 190.
    richedie 74 Replies
    • February 19, 2008
    • 02:30 PM
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  • By chance did you take a course of antibiotics when you first had your cold symptoms? If so, which one? The reason I am asking is that some antibiotics, in particular, avelox, can actually cause a tendon to tear, requiring surgery. This is a sometimes overlooked side effect of this particular antibiotic, and it is nasty! Just would want to rule this out. I agree with Blaze to get a different test from Bowen or Igenex labs for the Lyme...you are showing a lot of symptoms pointing in this direction. The floaters in your eyes are a sign that your Liver is being overtaxed. I would suggest finding an acupuncturist rather than the chiropractor to help all of your symptoms...especially if you are concerned with the neck manipulation. Acupuncture and Chinese herbal medicine is a very holistic form of medicine and your Oriental medical practitioner would be better able to tie all of your symptoms together (Liver and Spleen are both involved, based on your symptoms). PA state laws now allow you to go to an acupuncturist without having a referral...visit www.nccaom.org or www.acufinder.com to find a qualified practitioner near you. I really think it would help you! Best wishesDOM
    acuann 3080 Replies
    • February 19, 2008
    • 03:11 PM
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  • I need a referral for an acupuncurist? That is odd.......I assume it would not be covered like a chiropractor. Bowen or Igenex? Are they the only qualified labs? I guess I first have to find a doctor willing to have this blood drawn and sent to this lab? My Chiropractor is helpful and I wonder if she would help. Otherwise I have to struggle to find a doctor locally who is well versed in Lyme disease. You mentiojned the floaters are a sign of a taxed liver? My Ophtholmalogist just said floaters are normal...not to worry. Ugh! Where di you hear about the taxing of the liver? I have no idea where to turn or what doc to see next. I am almost at a loss at this point. I had Ulnar Nerve entrapment surgery on October 4th. I was recovering and taking a strong pain killer and exactly two weeks after the surgery, all of these symptoms started....first the pain in the foot with the tingling after I first had some cold/flu symptoms, stuffy head, achy, ears clogged - then the foot got worse and all the other symtoms. No antibiotics.
    richedie 74 Replies
    • February 19, 2008
    • 05:39 PM
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  • No antibiotics...... Bowen or Igenex? Are these the only good labs for this? I should ask my chiropractor if she would send me for the blood test since she is so helpful. Althought, I bet I would be best with a good doctor who knows Lyme well. They seem so hard to find and I am not sure why some do not take insurance. why are floaters a sign of a taxed liver? My eye doctor says floaters are normal, but I am seeing him again this week. I had Ulnar nerve entrapment surgery on October 4th, followed by pain killers and rest. Two weeks later, the symptoms started - slight head cold feelings, stuffy, ears clogged...then the foot starts to tingle and hurt...some days I would limp......the nights of pain and numbeness in the foot. then in each leg/foot, hands would go numb and cold, back of head(scalp) would go numb, tremors, chills, intolerance to cold weather, weight loss, floaters, pain in the eye, muscle twitching, aches in my left wrist, sever fatigue at first, nausea, loss of apetite, and trouble swallowing, but much of this has improved with time with the exception of the weight loss, floaters, feet, and swallowing. I see the encologist next week and then I'll decide who to see at that point. If all is well next week, I assume I need to track down a Lyme doc. This seems hard.
    richedie 74 Replies
    • February 19, 2008
    • 05:40 PM
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  • The thing that scares the ***l out of me is the possiblity of Myeloma or PEOMs. I should know by next wednesday. When you have children....it becomes even more scary. No antibiotics......Bowen or Igenex? Are these the only good labs for this? I should ask my chiropractor if she would send me for the blood test since she is so helpful. Althought, I bet I would be best with a good doctor who knows Lyme well. They seem so hard to find and I am not sure why some do not take insurance.why are floaters a sign of a taxed liver? My eye doctor says floaters are normal, but I am seeing him again this week.I had Ulnar nerve entrapment surgery on October 4th, followed by pain killers and rest. Two weeks later, the symptoms started - slight head cold feelings, stuffy, ears clogged...then the foot starts to tingle and hurt...some days I would limp......the nights of pain and numbeness in the foot. then in each leg/foot, hands would go numb and cold, back of head(scalp) would go numb, tremors, chills, intolerance to cold weather, weight loss, floaters, pain in the eye, muscle twitching, aches in my left wrist, sever fatigue at first, nausea, loss of apetite, and trouble swallowing, but much of this has improved with time with the exception of the weight loss, floaters, feet, and swallowing.I see the encologist next week and then I'll decide who to see at that point. If all is well next week, I assume I need to track down a Lyme doc. This seems hard.
    richedie 74 Replies
    • February 19, 2008
    • 07:13 PM
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  • No antibiotics...... Bowen or Igenex? Are these the only good labs for this? I should ask my chiropractor if she would send me for the blood test since she is so helpful. Althought, I bet I would be best with a good doctor who knows Lyme well. They seem so hard to find and I am not sure why some do not take insurance. why are floaters a sign of a taxed liver? My eye doctor says floaters are normal, but I am seeing him again this week. I had Ulnar nerve entrapment surgery on October 4th, followed by pain killers and rest. Two weeks later, the symptoms started - slight head cold feelings, stuffy, ears clogged...then the foot starts to tingle and hurt...some days I would limp......the nights of pain and numbeness in the foot. then in each leg/foot, hands would go numb and cold, back of head(scalp) would go numb, tremors, chills, intolerance to cold weather, weight loss, floaters, pain in the eye, muscle twitching, aches in my left wrist, sever fatigue at first, nausea, loss of apetite, and trouble swallowing, but much of this has improved with time with the exception of the weight loss, floaters, feet, and swallowing. I see the encologist next week and then I'll decide who to see at that point. If all is well next week, I assume I need to track down a Lyme doc. This seems hard. You need to research exactly what all they gave you at the hospital - including shots, IV's etc...and what pain killers they gave you. Your symptoms coincidentally happening following the surgery would make me believe you had a systemic reaction of some kind...and not so much lyme. Hard to say for sure. I do know that docs do not connect side effects of meds and symptoms. Did you have anesthesia if so what kind? I feel this is important and adverse reactions should be ruled out. Eye problems are related to the Liver according to Traditional Chinese medicine. The liver is responsible for processing all drugs/medicine/toxins/etc. Your eye doc is not going to acknowledge this connection, as he/she was not trained to connect the two. Floaters are "normal" in that they are not a sign of disease or malignancy...but since yours occurred so quickly I feel it is definitely related to your liver. Tremors, numbness, and chilled sensations can also be related to liver. I feel an Oriental Medical practitioner would at least help you get back in balance. Best wishesDOM
    acuann 3080 Replies
    • February 19, 2008
    • 08:40 PM
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  • My symptoms started exactly two weeks after sugery but I have had surgery in the past! I brought this up with two doctors but each said that as soon as I stop taking the medicine, the symptoms should clear if it was a reaction. Could I have a long term reaction to something? How do I research that? Confused.:( Doctors think I am nuts talking about reactions fromt the surgery.:confused: I can't understand how a reaction from surgery could last this long, unless they used rusty, contaminated instruments. The drugs, etc should all be clear of my system. I have had two sinus sugeries, one on my knee and a shoulder reconstruction. All four used a general anesthesia. This ulnar entrapment surgery was the first surgery where I ever had a local anesthesia with something in addition to make me feel good or feel out of it.... I found a Chinese practitioner locally who is trained in Western and Eastern medicine and also is an acupuncturist. Keep in mind, I have had trouble with my right eye for many years. I also have problems with my sinuses, mostly the left side..always bleeding and scabs...sorry to be so discustingly descriptive.
    richedie 74 Replies
    • February 19, 2008
    • 08:52 PM
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  • Hi again, I posted a response above and was wondering if you had any additonal thoughts. This is strange.... Thanks again.
    richedie 74 Replies
    • February 20, 2008
    • 03:50 AM
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