Discussions By Condition: I cannot get a diagnosis.

4 years, 23 drs, leg stiffness, foot pain, hand too

Posted In: I cannot get a diagnosis. 6 Replies
  • Posted By: kolivieri
  • December 18, 2006
  • 05:03 AM

January 2003 my husband started experiencing pain in the balls of his feet. Summer 2003, morton's neuroma was removed from both feet. Since then, the pain and stiffness has progressively moved up his legs. Summer 2003 he had carpel tunnel surgery which didn't help at all. Hands feel like he is wearing "gloves" all the time and his wrists hurt. Been to 3+ orthopedic surgeons for hand and legs. List of types of doctors: 2 vascular, 4 neurological, 3 orthopedic, 2 endocrine, chiropracter, 2 physical therapists, 3 pain clinics, etc. I have 2 ziploc bags of medications that have not helped. You name it, he has taken it. All kinds of tests - blood work, xrays, mri's, etc. The only glimmer of hope we had occurred this past year. He was diagnosed with "complex regional pain syndrome" and had 4 sympathetic nerve blocks. Those didn't help either which means that diagnosis wasn't right either. He's also been diagnosed with fibromyalgia by a neurologist in Birmingham who didn't know what else to say.

My husband is not a complainer, yet lives in constant pain. He is feeling pain and stiffness in his legs regardless of activity or inactivity. The bottom of his feet hurt constantly He has purchased many, may pairs of shoes. The only shoes that are "somewhat" comfortable are z-coils. He wears shoes 24/7 - to sleep in, to take a shower in, etc. Oh - and the weird thing is that his feet have grown 2 shoe sizes and from a medium width to 4E width. Very strange - NO ONE has any suggestions on that. He can't walk on the bare floor at all. For 4 years.....

His hands have hurt for 4 years too. The carpel tunnel surgery didn't help in 2003. He saw another specialist in October 2006 to insure it wasn't carpet tunnel - and the specialist said it wasn't. The main symptom is the wrists hurt and it feels like he is wearing "gloves".

He has been diagnosed with low thyroid, b12 deficiency and takes cholesterol medicine for a slightly elevated level.

Family history: Mother was born in Germany and immigrated to US in 1947. Father from New York. Grew up in Louisiana. He is 57 years old with 2 school aged children who keep him very busy!!!

My husband stays in good spirits. Our favorite doctor remark is "...you have a perplexing problem". This was an orthopedic specialist in Memphis! That was it - that was all the dr. said. We laugh about that now.

Another favorite occurance was from a doctor in New Orleans. He abruptly left the room, we are thinking great, he has a diagnosis. He came back and said he probably had "restless leg syndrome". After all we have been through, we knew that was a misdiagnosis. Then the doctor's notes that we had to pay for to receive were incorrect stating that my husband had no problem walking on the bare floor without shoes. I'm not sure who this dr was examining, but it wasn't my husband. That was a big waste of travel expenses.

I have a 3 ring binder full of notes, test results, chronology, etc.

I would be glad to go to any doctor in any state or country. We just don't know what else to do or where to go. We have already spent thousands on doctors, travel, medications, tests. Any advice on a diagnosis or a good doctor would be extremely appreciated.

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6 Replies:

  • Have had several "neurological symptoms" and I was tested for Vitamin B deficiency. Just a thought-check into how to increase this deficiency. Apparently, itcan cause life impacting symptoms. Wasn't so in my case, but this is really worth a try. You may want to check with a MD that practices homeopathics as well-Heatlth for 2007
    Anonymous 42,789 Replies
    • December 23, 2006
    • 11:33 AM
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  • Hello. I am so sorry for your husband's suffering. I am sure it is very ******n you too. I am, thank God, not ill, but I tend to be extremely tired all the time. I have researched fatigue, and came across "liquid oxygen". I have ordered some myself to see if it helps. I have not received it yet. On the same page it states how lack of oxygen in the body is the cause of many diseases. I work in the healthcare field, so I am pretty skeptical, but it made pretty good sense to me. It's really inexpensive. I wonder if it's something your husband could give a try? I've pasted in the link:http://www.herbalremedies.com/2250.htmlI sure hope it helps.
    Anonymous 42,789 Replies
    • December 23, 2006
    • 02:34 PM
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  • Possibly check for Lyme Disease? I have two siblings with it and they have both seen many doctors before being diagnosed. The disease mimics many other diseases. One sibling had an unnecessary sinus operation and root canal, which we now know was caused by pain from Lyme Disease. Avoid taking pain medication for a couple months before testing. It can give a false test result.
    Anonymous 42,789 Replies
    • January 2, 2007
    • 07:29 PM
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  • Hi Kolivieri, I'm sorry to hear everything your husband is going through. I'm in a somewhat similar situation -- pain in my hips and knees, that follows very specific patterns, and that which over two dozen doctors so far have been unable to diagnose. I've been fighting it three years as of yesterday.I noticed that you mentioned that your husband had been diagnosed with low thyroid and B12, and I wanted to mention to you that you should follow up on both of those and keep very strict track of them, regardless of the rest of your husband's health. In addition to the joint pain I've been experiencing, I also have low thyroid caused by Hashimoto's Thyroiditis, and the only way I've been able to keep doctors from blaming everything on that is by keeping careful track of my thyroid levels and medications.I would strongly recommend that you get copies of all your husband's thyroid test results, if you haven't already. If he has been prescribed thyroid medication, he needs to take it every day, at the exact same time, with no food, medications, or drinks other than water for four hours before, and one hour after he takes the thyroid medication. He needs to keep taking it even if he doesn't feel any different on the medication. With thyroid disease, it can take six months to three years on the medication before any change is noticed -- and even then, it may not change anything about his primary health issues.If you haven't been told what's causing his hypothyroidism, ask for a doctor (primary care or endocrinologist, usually) to test for thyroid antibodies to see if it's the autoimmune disease Hashimoto's. And have them test his TSH (Thyroid Stimulating Hormone) again too, to see where it's at now. And don't go by the lab's ranges for "normal" which will say anything below 5.0 TSH is fine. Look into the most recent publications by the American Association of Clinical Endocrinologists -- they've recommended treating anything over 3.0 as hypothyroid, and a good endocrinologist will adjust your husband's medication level until his TSH is between 1.0 and 2.0 or so, or whatever level he feels best at (which, of course, is pretty impossible to judge for those of us with something else in addition to thyroid disease).Like I said, none of this may change how your husband is feeling, or at least not any time soon. But I do think it's worthwhile to get the diagnosed issues under control, so that the doctors can rule out more things. And I would emphasize the growth of your husband's feet to the doctors. Pain can be a difficult thing to diagnose, but the physical changes in his feet should not be. And have you thought about going to a Mayo Clinic?Good luck,~Ryot
    Anonymous 42,789 Replies
    • January 3, 2007
    • 02:35 AM
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  • Have you tried acupuncture? It can be very helpful, and worth trying since nothing else seems to be helping. I get lots of new patients at my clinic who have pretty much tried everything else and decide to give acupuncture a try as a last effort. I have helped lots of people like this and would recommend trying it for your husband. To find an acupuncturist near you please go to www.acufinder.com and type in your zip code. As he has a chronic condition it may take several months to see results. But please give it a try! Doctor of Oriental Medicine
    acuann 3,080 Replies
    • January 3, 2007
    • 03:25 AM
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  • Any luck finding out the cause of the leg pain and feeling of 'wearing gloves"? I found this thread by typing in the exact same symptoms which I have been experiencing for two years now. The leg pain is still the same but the glove feeling has increased slightly over the two years.
    Anonymous 42,789 Replies Flag this Response
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