Discussions By Condition: I cannot get a diagnosis.

Sudden loss of foot function and weakness legs,feet, MRI all neg.MRA pending

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: ukcountess
  • February 10, 2008
  • 04:13 AM

Admitted over a week ago and told evrything from Guillianne Barre to Lupus to ALS, MS. No sign of TIA or head bleed. No sign of cancer ( had breast ca 2 years ago. Need splints to walk and very weak legs. On steriods for what ? Losing function to drive car. What next. Seen neurologist , rhuematologist, oncologist...no answers yet. I am an RN and usually trust my fellow medical experts but this is scary. I feel like I have to disgnose myself. No one seems to reakky take chargs in this Dx. ...any ideas out ther, I;m deperatly still tryingto keep a full time job.:(

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  • I had a tough to diagnose neurological illness too. It took me 8 years to find out that I have something called Hashimoto's Encephalopathy. It was diagnosed by checking thyroid ANTIBODIES (to thyroglobulin and thyroperoxidase) and not just hormone levels (for years I was reassured that my thyroid gland was okay because my hormones were okay- then they found the antibodies and I had an ultrasound which showed my gland was full of tiny nodules from the autoimmune destruction).HE looks different in each patient. It can look like MS, spastic paraparesis, one of the ataxias, metabolic disease, seizure disorders, etc ... it looks like a lot of different things and so it is worth checking into if you have an undiagnosed neurological condition. Most neurologists do not know about it yet, since it is so rare. It took me 8 different neurologists to get my answer, and it was a movement disorder specialist who figured it out.So, I'll throw it out there in the off chance that this could be what you have. Better to find out now than 8 years from now!I hope you feel better and get answers soon.I am sorry you are going through this.
    Anonymous 42789 Replies
    • February 10, 2008
    • 07:06 AM
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  • Actually about 3 years ago diagnosed w/Hyperthyroid goiter after sevre weight loss was on med ? name for a short time. Taken off by Endocrinologist who said I was only borerline. I take Inderal for high BP which is supposed to also help w/the thyroid. Now since my breast ca 2 years ago I have gained weight and currenlty on steroids which is causing weight gain. Went from 94 lbs 5'6" afew years ago to 134lbs now. None of the docs seem to address the thyroid. Have had supposed " neuropathy" since chemo over a year ago but this is loss of function which is worse. funnily enough the pain I have suffered has pretty much gone now.The weakness of both feet and legs have not gone yet and I hate the steroids. Have difficulty pushing down on the gas peddle and have to wear a leg brace most of the time.
    ukcountess 9 Replies
    • February 13, 2008
    • 03:14 PM
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  • You can get Hashimoto's Encephalopathy in both Hashimoto's autoimmune thyroiditis and Grave's disease, too. Not all hyperthyroidism is Grave's though. You can have brief periods of it in Hashimoto's, when your gland dumps out large amounts of thyroid hormone at once... It sounds like your hyperthyroidism could possibly be Grave's, but there may be other causes of hyperthyroidism. Did you ever get your antibodies checked?There's 3 groups of thyroid antibodies:thyroglobulin (TG)thyroperoxidase (TPO)and TSH stimulating and inhibiting- these are the ones for Grave's, but some people with Graves also have TG and TPO antibodies as well... Hashimoto's and graves are sometimes considered to be on a spectrum of disease called autoimmune thyroiditis, and you can sometimes have both...You might also want to consider getting checked for other types of autoimmune encephalopathies (HE is an autoimmune encephalopathy)...In particular, you can get something called Stiff Person Syndrome with breast cancer. It's pretty rare, though. They would need to check anti-GAD antibodies, but I don't know what your signs are on exam, etc so it really is up to your doctors to look into these things. You might not fit this picture clinically- I don't knowAlso, you can get nerve damage from prolonged steroid use...It does sound like you might possibly have something rare, if they haven't figured it out yet. These are just suggestions in case your doctors haven't thought of them yet.I hope you get some kind of answers soon.It's really hard losing neurological function and not knowing WHY.I will keep you in my thoughts.
    Anonymous 42789 Replies
    • February 13, 2008
    • 10:37 PM
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  • Now my Neuro is saying it is return of MS which I initially had symptoms for 8 years ago but nothing sicne. Did not f/u with neuro back then. Treated an inner ear imbalance w/ENT. Still I am not convinced of this daignosis. He only offer PT no meds. I am applying for disability in case this is rapidly progressing. You can get Hashimoto's Encephalopathy in both Hashimoto's autoimmune thyroiditis and Grave's disease, too. Not all hyperthyroidism is Grave's though. You can have brief periods of it in Hashimoto's, when your gland dumps out large amounts of thyroid hormone at once... It sounds like your hyperthyroidism could possibly be Grave's, but there may be other causes of hyperthyroidism. Did you ever get your antibodies checked?There's 3 groups of thyroid antibodies:thyroglobulin (TG)thyroperoxidase (TPO)and TSH stimulating and inhibiting- these are the ones for Grave's, but some people with Graves also have TG and TPO antibodies as well... Hashimoto's and graves are sometimes considered to be on a spectrum of disease called autoimmune thyroiditis, and you can sometimes have both... You might also want to consider getting checked for other types of autoimmune encephalopathies (HE is an autoimmune encephalopathy)...In particular, you can get something called Stiff Person Syndrome with breast cancer. It's pretty rare, though. They would need to check anti-GAD antibodies, but I don't know what your signs are on exam, etc so it really is up to your doctors to look into these things. You might not fit this picture clinically- I don't know Also, you can get nerve damage from prolonged steroid use... It does sound like you might possibly have something rare, if they haven't figured it out yet. These are just suggestions in case your doctors haven't thought of them yet. I hope you get some kind of answers soon.It's really hard losing neurological function and not knowing WHY.I will keep you in my thoughts.
    ukcountess 9 Replies
    • February 15, 2008
    • 00:37 PM
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  • Have you had any abnormal tests and what did they say?
    Anonymous 42789 Replies
    • February 17, 2008
    • 09:21 AM
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  • I had an abnormal MRI 8 years ago suggesting MS. I had symptoms then but did not return to neuro. ENT Dr solved problem ( vertigo) . Now 8 year later this neuro , I think is guessing because all the tests so far seem negative, ( he has not suggested a spinal tap) but does have over 20 years experience in neuro and appeared to mull over the MRIs for a long time. Ther is nothing written about MS on the most recent brain MRI report because I read it myself. He just was not very talkative and did not explain what he saw, he just saidf it is coming from the brain. Fact is I am still very weak and cannot walk more than about 50 yards w/leg spint on and have total numbness in my feet.
    ukcountess 9 Replies
    • February 17, 2008
    • 10:11 PM
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  • What does the MRI report say? MS plaques tend to be long, finger-like white areas, often perpendicular to the ventricles. It might help to get a second opinion from another neurologist- perhaps an MS specialist, who can tell you one way or the other. I'd bring the actual films in. MS can be a tough thing to diagnose because a lot of doctors are reluctant to call it MS because it puts that disease permanently in your medical records, etc. Radiologists shy away from it too for the same reasons. Sadly, this puts the patient in "limbo-land" where they don't know what's going on and in the meantime have disabling symptoms.I was worked up for MS several times by one of the few doctors who took my symptoms seriously. One of the confusing points was that I had small, round white densities on my MRI. Nothing was written in my radiology reports, but the neurologist was concerned. They had the same intensity as demyelination, but MS plaques usually aren't completely round and small... I showed my films to a neuroradiologist, and was told that the spots were "perivascular changes, consistent with either high blood pressure or migraines". I don't have hypertension, but part of my HE is severe migraines... I subsequently found a couple of journal articles on HE and at autopsy, patients had collections of inflammatory cells around their blood vessels in the brain (perivascular changes?). I have no proof, but i think the spots on my MRI are from my HE. There are other case reports of HE patients having small abnormalities on MRI...It sounds like you might really benefit from getting a second opinion from an MS specialist. I know the idea that it may be MS is very scary, but there are wonderful medications out there that help slow it's progression...One thing to keep in mind (in case they don't think it's MS and can't figure out what it is) is that most doctors still don't know about HE (7/8 neurologists I saw had not heard of it), so you may need to bring this up yourself, if it looks like you don't have MS.It definitely sounds like you need another opinion from a well-respected neurologist, hopefully an MS specialist.I'm sorry you are going through this. I hope you get more definitive answers soon. There are many great support sites/organizations for MS, if this is your diagnosis. Best Wishes.
    Anonymous 42789 Replies
    • February 18, 2008
    • 10:34 PM
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  • Thanks for the information. I am definately going to see a neuro that has MS experience. The rheumatologist gives me vague diagnosis and put me on steroids which I think is making things worse. Soonest I can get MS neuro consult is at the end of the month. My first MRI 8 years ago did show two white patchy areas and was noted to be possible demylination on that report,. that neuro retired soon after that and never treated me for MS. My latest MRI does not note any of those areas. I have had hypertension for many years and on meds for it. Problem w/no solid diagnosis is that would make it difficult to get disability which I think I will need soon.
    Anonymous 42789 Replies
    • February 18, 2008
    • 11:00 PM
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  • Have you been tested for infections? Mycroplasma,Cpn, EBV, Lyme, etc. Two things you said threw up a red flag to me. 1)Brain lesions are also linked to Lyme disease and co ifnections.2) You seem to think the steriods are making you worse??? They can in people with Lyme!!! Cause they shut down the immune system and allow the bacteria to spread . Lyme & co'infections don't stay in the blood stream and the blood tests are not that reilable. A western blot is the most accurate. Make sure you get a copy of the results.Undx'd Lyme and co infections have been found to cause MS, ALS, Fibro,CFS, thyriod, and much more. Please check out www.lymenet.org. Do a search on steriods. You can find a dr who knows how to treat lyme here....Most drs do not!10 yrs ago, the drs thought I had MS. But the brain scan had no lesions, so they said it was Fibro. 4 yrs ago I was positive for Lyme. 2 yrs ago I got a second bite and have gone down hill with more problems. I am slowly making my way back up the hill. Best wishes~~Jersey Lymie
    Anonymous 42789 Replies
    • February 19, 2008
    • 10:02 AM
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