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Forum Name: Neurology Topics

Question: Many symptoms, no dx... help please!


 AlwaysAMystery - Sun Aug 19, 2007 9:01 am

Hello, I'm a 29 y.o. female.
I apologize ahead of time for the length.
I have been seeing a primary care physician, a neurologist, and an audio-neurologist on a regular basis. I have also been to a rheumatologist and a neuro-opthomoligist. No one as of yet can figure out what is wrong with me. So far I have been dx'd with high blood pressure, anxiety, hyperthyroidism, high frequency vestibuliaritis, and have been told "it's not imaginary, the tests show that there is something wrong, but we don't know what."
My medical history includes Rocky Mountain Spotted Fever in 1987 or 88, mono in '94 or '95, severe insomnia from '97 to '99, pregnancy and delivery of a daughter in '99, Bells Palsy in '01, and migraines that have increased in frequency and duration since '95.
I am currently taking Oxycodone w/APAP prn for pain, Sertaline for anxiety, Benicar HCT and Atenolol for high b.p., Imitrex prn for migraines, Seasonale birth control, Gabapentin for nerve pain, and Singulair for a lung problem that is yet unsolved and my p.c.p. is now thinking may be allergies. I have also been perscribed and completed two different types of antibiotics for a "lung infection" and neither has helped.
In my family, my mother has hypothyroidism, depression, PTSD, and possible essential tremor. My father passed away at 59 y.o. of metastisized prostate cancer, but also suffered from depression, anxiety, and type 2 diabetes. My sister has depression, tinitis, and had ovarian cysts. My maternal grandmother has non-hodgkins lymphoma and RA. My maternal grandfather had sjogrens. My fathers side of the family has a heavy history of breast cancer. On my mothers side, there is a lot of alcholisim, and my mom had an uncle that had parkinsons.
My symptoms are as follows:
Starting last fall, I began experiencing moderate to severe pain and weakness in my legs and arms, as well as tingling, numbness, and crawly feelings. Both legs are affected, but not always both at the same time. Back and neck pain off and on. Severe fatigue, I can sleep 12 hours at a crack and still be tired. Then, there are some nights where I am tired but cannot fall asleep. I have a vision delay, where when I turn my head to focus, my eyes lag for a few seconds and then catch up. I have nystagmus, infrequently. Upon waking, my pupils are different sizes, my right pupil stay large for about 20 minutes regardless of light conditions, and then it starts to act "normal." The skin on the soles of my feet constantly peels off, in large, sometimes thick, sections, occasionally this happens on the palms of my hands as well. I have headaches daily, and I get migraines a couple of times a week. Muscle cramping and spasms occur on a very regular basis, in various areas of my body. I also have trouble starting to urinate, the worst episode was just 2 days ago when I was unable to go for close to 13 hours. I cannot eat raw vegetables anymore with out bringing on sudden diarrhea. I get dizziness and vertigo suddenly and without warning. I am unable to drive for more than about 8 minutes with out getting dizzy, Heat intensifies pain and fatigue as well as the muscle spasticity.
I have had a brain and cervical mri with flair, both came back normal. I have had numerous blood tests, ANA, thyroid, rheumatoid factor, heavy metal screening. They have ruled out lupus, R.A., a bunch of other rhumatalogical things, and have told me that I'm not imagining it. They won't rule out M.S. yet they said, but I'm hanging in limbo here. They are also considering that it may all be caused by black mold that was in the house that I rented for a year. (Moved out about 2 weeks ago, no improvements in any symptoms.) I did have about 3.5 weeks of only mild pain, but after that it seems like it has all kicked in full force and then some. I don't go back to my neuro until late fall, I see my p.c.p. tomorrow. I don't know where to go from here. I have had some people suggest that I see a m.s. specialist, some people suggest an environmental toxicologist. My p.c.p. doesn't know why my neuro hasn't ordered a full spine mri or an lp. Should I have my p.c.p. order those, and is there anything you can think of that might show something?
Again, I am sorry for the length. I really appreciate any help I get!
Thank you!
Claire
 Dr. Chan Lowe - Wed Sep 12, 2007 11:20 pm

User avatar Hi AlwaysAMystery,

I wish I could figure this out for you. Unfortunately I really can't come up with much more than has already been assessed for. I would agree with doing a full work up for multiple sclerosis, including a lumbar puncture for testing of oligoclonal bands and antibody screens. It certainly seems reasonable to do a full spinal MRI as well.

There is a condition known as Devic's disease that is very similar to MS except that it only attacks the optic tracks and the spinal cord. It's fairly rare and your symptoms don't all fit this but it can be tested for basically at the same time as testing for MS. It has its own antibody tests and spinal fluid tests that can be sent.

Follow up with your doctors is important. I can't think of another specialty that you should see. I think the neurologist and the rheumatologist are likely to be the most helpful.

Sorry I can't be of more help. Keep us updated if you don't mind, especially if you find a cause. Perhaps some of our readers will be helped by this.

Thanks and best wishes.
 AlwaysAMystery - Thu Sep 20, 2007 8:11 pm

Thank you for your advice. I will definately keep you updated!

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