[Amy Kate]

Hello Everyone!

I'm pleased to find this forum and hope that it can be helpful to me and I can be helpful to you all as well!

Just a little bit about my story: In Feb 2012, I went from working full time to being so ill that I could barely get out of bed, and would be totally exhausted with just trying to take 5-6 steps to get to the bathroom. Doc did all kinds of tests and blood work, but other than an elevated SED rate (indicative of infection somewhere in my body), nothing could really be found. All the big ones were tested for: Lymes (2x), Diabetes, Myocarditis (infection in the heart muscle).... but all tests, except for the ongoing elevated SED rate, came back normal. In spite of normal results, I got weaker and weaker, and eventually lost the ability to walk w/o assistance- due to pain, tingling, "fire" in my feet and balance/gait problems.

March 17-22 I was hospitalized as Doc thought maybe I had Guillian-Barre Syndrome, a peripheral nervous system disorder, but that has since been ruled out.

Since then I have been being seen by my primary care Doc monthly as well as am being seen no longer by a local neurologist, but by a neurologist at a well- known teaching hospital. Long story "short"..... still no diagnosis, tho symptoms persist (but 3 mos of PT have gotten me back on my feet again w a support cane), new symptoms appear and testing continues to be done. I am having my 2nd MRI this week.

Neuro Doc has ruled out all peripheral nervous system disorders and says it definitely appears to be central nervous system related... (ugh). He is seriously looking at MS and Epilepsy from this next MRI and will compare it to the one I got in the hosp back in March. (Though I've never had a seizure iin my life to my knowledge!)

From symptoms and research I've done (I also work in a hospital, tho am not a nurse/doctor, but have access to all kinds of med research) my husband and I would not be surprised at all if it does turn out to be MS.

However, this "mystery" illness is taking forever to get a dx for, which is why I'm glad to find this forum. Most of my friends can't understand my situation and (tho they'd never say it) I think they are sick of hearing about it, seeing me not better and struggling. It has caused some isolation, no, a lot of isolation for me! Again, another reason I'm happy to find you all!!

Ok... enough for now. I'm happy to answer (most) any questions anyone might have, and appreciate any support I can receive or give. My family and I continue to wait, pray and hope for a dx, and some possible treatment... but even we are coming to our whits' ends with all this!

Thank for taking the time to read and for being here!! Amy Kate

[azoyizes]

Hi Amy Kate, and welcome to NeuroTalk!

I am sorry you are having so many health problems. I hope that soon you will find the answers.

[Amy Kate]

Thank you!

[Darlene]

Amy Kate,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us in touch with your condition. The following forum on epilepsy is located below. Just click on it for some assistance.

http://neurotalk.psychcentral.com/forum11.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[(Broken Wings)]

Welcome to NT

You have come to the right place for support and good information.

MS is not easy to deal with. I pray it's not that.

You seem to have gotten somewhat better, walking after PT. I'm not a doctor, but that's significant improvement.

If you can, find comfort in knowing that all those expensive tests are not showing other things, like cancers, tumors, diabetes, and other difficult conditions to cohabitate with.

It's hard when you don't know. Scary is more like it.

If you have the MRI and a consult and you still don't know, look farther down the road for another doctor. I'm sure your doc is good. I'm sure he's troubled about it too. Doc should refer you out.

I gathered morsels along my journey of physicians, until I got lucky with Dr. Atasoy. He's a surgeon but he also saw me as a whole person and helped my other conditions, too.

Here is the link to the Stumble Inn, in case you haven't found it yet.

http://neurotalk.psychcentral.com/forum17.html

Sometimes it takes a while to get a dx. don't give up and try not to be too discouraged.

Keep asking questions.

If you keep a journal, you may discover a pattern to help you and your treaters. Make it as complete as you can. Include meds, vitamins, foods, etc.

Take care... (BW)

[Geordie]

Hi Amy Im new here also and just finding my way around here.I cant type too much as it kills my fingertips.I hope you can get a Diagnosis soon and its all good.

Welcome G

[Amy Kate]

This actually is my SECOND Neurologist, since this all started. And he works at a teaching hospital, (as a professor of Neurology and sees patients) so I am feeling much more comfortable with him, his knowledge and resources than I did with the first neurologist I was seen by!!

So, 2nd MRI tomorrow afternoon - first one done by THIS hospital. Other was done while I was an impatient at a general hospital in March.

You make very good points, and I am VERY thankful that it nothing as serious as a brain tumor or cancer or something like that. But, you also understood how difficult it is to wait and wait and wait.....on an unknown, all the while trying to live as normal a life as possible even though my life has changed drastically since this all hit in February.

Thank you all for the greetings and the encouragement!! It is appreciated!

[(Broken Wings)]

You will find lots more here if you keep posting and plundering around.

Keep looking. Keep asking questions. Well thought out questions are a must when going to a doctor's visit. Don't waste your window of time. It's tough out there in the medical jungle.

It is so frustrating not having an understanding. It is half the cure, you know.

One more thing I'll share. My arms were killing me. I have cervical herniations and bulges, bilateral thoracic outlet and bilateral scalene involvement. At one point in my 7 1/2 years of hell (I don't want to discourage you by that time frame) I found comfort in knowing that my arms were not going to explode or fall off... however dumb that may sound to some, I did find comfort in that.

I also learned, through Julestro http://www.julstro.com/ not to say "My scalenes are killing me" or "my arms are killing me." The mind is very receptive to negative... be careful what you say, or how you say it, maybe. I now say, "Oh, those darn scalenes are acting up." a much lighter tone.

In the healing process, I tried lots of things. Kinesio tape, balls, twist boards, spinal alignment boards, inversion table, so many things. I do attribute more of my healing to LED and infrared light therapy pads. I would enlighten you about those if you're interested. I've just never had time to start a business with them. I dabble in it, because I want to get help to people who are suffering.

Everyone is different and unique. What helps one may not help another. So I also learned to grade things as postive or negative. Your body knows... things may not make sense today, but if you keep the journal, you can look back and say, "Ah. so that was why that was happening."

Hang in there...(BW)

[Amy Kate]

Update: I had my 2nd MRI yesterday.

Today, the neurology department called me and said that my MRI was "unremarkable"- so that's good.... But the "mystery that is me" continues.

Next, my neurologist wants (and I do too!) me to see a neuro-ophthalmologist at his hospital because of my vision issues that have been here since Feb, and seem to be manifesting new symptoms- but I don't know when appt will be scheduled.

If nothing "remarkable" is discovered from the neuro eye exam, then I get another spinal tap. And at the end of this month I still have a brain EEG that is already scheduled.

So Neurology doc is still looking, but finding no reason for me to be feeling as poorly as I am or to be having the problems I am.

As glad I am that the brain MRI was "unremarkable", I'm also struggling as it again prolongs the unknown. So, I have very mixed emotions today.... I'm glad, but am also frustrated at another test with nothing "helpful" (please understand I'm grateful there wasn't something awful) and frustrated at the continuation of the "mystery that is me" and having to schedule more tests.

I just (like most everyone here, probably) want to feel better and get my life back! Sorry.... it's been a rough day.....

[heb1212]

and I am glad that i, for once, can reply with, if anything, a smile and words of encouragement.
I, too, have had that "mysterious" illness. You can read my account under Heb1212, if you want. I've been tested up and down and back again, for EVERYTHING and won't bore you with that. But have they tested you for any viral illness and possible post-viral syndrome and/or post-viral neuropathy? I was diagnosed with parvo virus b19 in May, 2011 and have had a cascade of health problems since then. At first, the many drs/specialists said, "No, couldn't possibly be," and after all was said and done have now acknowledge that it could very well be... resulting in, now, an auto-immune "freak out" including the neuropathies. Just a thought, given the general ill, weak, barely able to walk feeling, followed by the neuropathy. "Broken Wings" is right... you have a small face time with doctors... be educated as best you can and DON'T BE AFRAID to assert yourself.
Cathy