First post
 

New here. I'm waiting for a spot in neuro movement clinic disorder. Could someone tell me if that's just diagnostic or do they help you move better? My background briefly. At age 21 began with problems. At 28, was told ms or Parkinson's. New dr in my 30s assured me nothing wrong with me. Continued downhill battling illness, vertigo. Visited 8 drs finally referred to neurologist but was told to cancel apps.
They found 2 lymphomas (pulmonary) I had as little as 1 mo to live. Promised I would feel better but things got 10x worse. Successfully treated 2 yrs ago. My tremors (not essential), fatigue weakness have been increasing upon exertion. Finally saw neuro department and am now in process of ruling out common stuff. They did tell me I have neuro problems. Oncologist had referred me to rheumy who diagnosed fibro, but I do not have fibro pain

. Neuropathy started in hands and feet spreading up to include entire legs. Neuropathic pain came with chemo. Used to read 5 books at a time, lost ability to read/comprehend. Not totally, I can read children books. Former classical pianist. I passed out driving home from pool, now neuros all concerned with my syncope. On lighter side I do act at local theatre, short skits. Other than that I got nothing. Any advice welcomed! Best wishes to everyone, Katherine

Welcome Katherine. Nice to meeet you. Sorry as to why you are here.:hug:

The process of Diagnosis can sometimes take awhile to pinpoint, especially neurological diseases. Ask your Neuro to treat your symptoms as best as he can and hang in there.

Let us know how it goes with your Neuro.:)

Thank you so much for your reply! I was hoping to bump into a nurse on this forum just to validate that I am not completely nuts! :wink: It is day 12 and the burning pain has subsided somewhat. It is constant, but no longer maddening. The weakness and poor coordination have also improved a little. Perhaps I am getting used to it, or maybe the additional rest has helped.

As for the neurologist...I wrote a professional letter of complaint describing my history and symptoms, radiology report, and the nurses response. I ended the letter with a request for the CD of my MRI. I did add one zinger at the end, though. After citing my qualifications, I reminded the customer service department that the standard of care is that any patient complaining of unremitting pain should be seen by a doctor within 24 hours, and ANY person complaining of arm pain, unusual weakness and fatigue, and nausea should be seen in an Emergency Department immediately to rule out cardiac issues. Fortunately my PMD was right on top of that, and cardiac has been ruled out.

In the meantime, my laboratory studies should be in Monday or Tuesday, I will obtain the CD's of my MRI's, and after following up with my PMD next Monday I am going to make an appointment with the MS clinic at Mt. Sinai and put this issue to rest. They will find a cause for these symptoms whether it is MS or not.

Sadly, I think I have been having MS symptoms for several years and did not recognise them. I have had difficulty with urination and frequent UTI's since 2009, and leakage of stool since 2009 as well. My last job was very demanding and everytime I had a viral illness (I worked with children) I would develop a pain syndrome in my hips and upper legs that was excruciating, and lasted for weeks. I have had shingles 4 times, and always thought the virus had irritated the nerves due to the sensitivity to varicella. I know I am at least half right, the virus certainly did irritate these nerves.

I am very fortunate that I live in a supportive household with supportive family and a roommate who has been a life long friend of my husbands.(Who is also a nurse, and getting more worried every day. He has never seen me sleep like this). Everyone knows that something is really "not right". I am typically very energetic, and lately I have not been able to get off the couch. Yesterday I took my daughters to the movies, and was so exhausted today I took a five hour nap. I have been napping almost every day for the last 12 days, and it had been years since I had napped during the day. Even when I am very sick, I don't sleep during the day. Fortunately, the family has been picking up the ball, and being incredibly helpful. (The teen's are still teens, but they don't gripe as much when I ask them to do the dishes!):)

Thanks for your support, and validation of my concerns regarding my doctors staff. It is nice to know I have a safe place to share this issue!

Tammey:hug:

Thank you Sally! I used to live in SW Ohio, near Zanesville, and had a home in Dresden. I received my nurses training at Ohio University. I really want to thank you for what you do, and how helpful this community is. It is a blessed place to be when you can help others when they need you the most, and do so just because you can! :hug:

Tammey

Movement clinic
 

Sally, thank you. Do you know if movement clinic is just diagnostic? UVA neuro dpt said they want to fit me in as soon as possible. Also he said didn't think I have Parkinson's. Nor did I have essential tremor. Since he left out ms might it be a possibility? He wants to do emg himself (had one done 6 mos ago) and ordered MRI. I know there's a bunch of other stuff it could be. I have other crappy stuff, band around chest. Just started this summer uti, now bladder probs. cog issues. Passed out 4 times in heat.

They're checking hypoglycemia, thyroid. Crash Generally around 3-5 for last ten yrs. just list some stuff because it's not just one thing. I disagree w fibro and cannot relate to info, particularly in as exercise makes me worse. 15 yrs I've put up with therapists saying its all in my head, last one told me maybe I was just babying myself which is why I went swimming in warm pool and oops 95 that day. Passed out driving home. (i was told I passed out due to lyphoma/anemia). Ranting a bit beg pardon. I don't care about syncope, it's the fatigue that's wearing me down. Any advice appreciated. Except for a few shows, I'm housebound. 2-3 decent hrs a day every few days. Thanks again, Katherine

Hey!

I have been following your posts, and it seems like your case is a little complicated. I had a complicated case also, and eventually needed to go to a major medical center for diagnosis and treatment. Sometimes you need to start from scratch, and let someone look at your case with a fresh perspective.

As a nurse, my best advice would be for you to create a journal or outline of your medical and neurological symptoms. Be sure to include the year, and if not the month, the season. Extremes in temperature can worsen neuro symptoms, and may aid in a diagnosis.

Then, (a daunting task) compile your medical records in a folder in date order. Include EVERYTHING!!!! Chemo, surgeries, meds, colds, flu, ANYTHING a doctor has treated you for. This will give the docs the info they need to diagnose you. Include Emergency Room visits. Often an ER will do a more comprehensive assessment (radiology, labs, etc) than your primary doctor, because they do not know you well. A "snap shot" of your entire condition during illness can be invaluable to a practitioner who is trying to put a puzzle together.

In general, they will look at the outline, then look at the files if they need more information. Medical people love to work with patients who want help, will give them the tools they need to work with, and will take thier advice. NEVER express yourself dramatically (unless you truly can't help it), as medical practitioners are accustomed to seeing people who "cry wolf" and if you appear to be "crying wolf" it WILL be assumed that you are.

Nurse Nancy (in this forum) said to me "Never stop being your own advocate". She is right. I hope this helps give you some tools to navigate the medical community.

You are tired, but not beaten! You can advocate for yourself. Keep on trying!

:hug:

Tammey

I think like you do lol. However neuros were not very interested in history. Might be a good thing. They asked me why I wasn't in to see them sooner. That I have neuro probs. Dah.. Pcp said it would be a waste of my money. Neuros did say other drs don't know what to look for. Loved the horse snort the neuro dpt head gave when I told them my previous dr refused me a physical in 2009, told me to come back when I'm 50.

Anyhow would love to chat with ya if we are both going thru diagnostics. I read ur post.. Smiled cause I so relate.

My biggest prob I moved to va 6 yrs ago, being sick I don't know anyone here. An old social friend is a neuro chiro I told him about my pn he wants me up in mainline pa so I maybe treated proper. My cousins in San Diego r immunologists, they offered me their couch.

I've not told either of them that I'm getting worse in some ways, better in others. I was hoping to get my strength back and a diagnosis first. Furious w onc/hemo told him I wasn't from here don't want to be here! He promised me I would feel so much better! I don't have the wits to move :-) or to figure out this website. I'm homeless in another year. My landlord kindly offered me his cabin, I asked him if it had a bathroom, he said he'd add one.


I do hope you find answers and some relief soon.
Warm regards, Katherine

Wow. You have a lot of stuff going on, and stress isn't going to be helpful. Kind of hard to put your energy into getting better when you are worried about having a place to live.

You have a very good resource in your friend who is the neuro chiropractor. I'm thinking they can guide you to what you need to do. It also seems like you would benefit from a case worker. That may be a little challenging without a diagnosis, though. That said, once you have a diagnosis, a case worker can help you look at the resources you have, what additional needs should be provided for, and help you get those services. Case workers are not just available at the department of social services. Every hospital (including large clinics) have case workers to manage issues just like yours.

Your friend in PA has a lot of resources and contacts that may be helpful to you. If you need to travel to PA to be seen, I would do it. I am lucky because I only live an hour from NYC, and truly have my choice of clinics to go to. If I lived farther away, I would still go there. When I was diagnosed for my pituitary disorder I lived three hours away from the clinic. The process was exhausting, but well worth it!

Keep up the good work!:hug:

Tammey

Wow! I am starting to feel better! Energy levels are back up, pain is almost gone, and function is better. Still a little uncoordinated, but functional! Day 14...seems like that is becoming my pattern. I recalled the other day that early in June I suddenly lost my hearing in my right ear. I went to the doctor thinking I had an ear infection, but they couldn't find anything. They thought my allergies (for which I didn't feel very symptomatic) may have caused some swelling that wouldn't allow my ear to drain. They put me on flo-nase (a steriod), and the symptoms went away in a few days. That was also a two week course. Hmmmmmmm.........

Hello all. I am new to this thread and looking for advice and support for what I have been going through. After 5 years of symptoms of ms I am still without a dx but every time i go in with a new symptom am told it sounds like ms. At this point I am not very functional at all and with every attack I get new symptoms and am desperate for help. The depression has started to get pretty bad over the past two weeks...