Skip to content

Announcements

We answer all types of Neurology/Neurological questions about the brain, spinal cord, and peripheral nerves. Include your age, sex, current meds, and known diagnoses, upcoming/completed appointments, tests, or procedures. We are not physicians. We help explain medical terminology and give support.
An update - wondering if some of it isn't neuro
avatar
regslady posted:
I just realized how long my original threat had gotten and thought it was time for a new one.

I've been on the new dose of my thyroid med for several weeks now. My memory has gotten much better and, while I still get tired out faster than normal, that constant feeling of exhaustion has lessoned some. I can also focus better...I can fill out crosswords and pay attention throughout a conversation.

I got my eyes done a week ago and my vision has changed...I even graduated to bifocals. It doesn't explain specific times of blurriness, but it does explain my general feeling of not seeing quite right. I am supposed to go in in two weeks to get my eyes dialated. The optometrist really wanted me to have it done but wouldn't do it then because I had driven. I pick up my new glasses next Saturday.

I had my lower back MRI done on Friday. I can get a copy of the results in a week.

The cortizone shot really helped with my neck pain and neck mobility. Over the last few days, I have felt the pain starting to creep back and my neck is starting to pop again when I move it.

I ran across a term: cervical myelopathy. It really makes sense with a lot of my symptoms and I am going to ask the doctor about it.

Maybe if I can get some of the symptoms definiatively explained away, it will leave a smaller set of core symptoms that are (hopefully) more easily diagnosed.

Thanks again for helping me through this!!!

Nancy
Reply
 
avatar
Lifes responded:
I'm so glad to hear things are improving for you! About time, huh?

Lifes
 
avatar
regslady replied to Lifes's response:
Good news and bad news.

My pain levels are still much lower, thanks to the cortizone injection and the muscle relaxers. My memory is still much better than it was, I assume thanks to the increase of my thyroid med. What a blessing!!!

My balance problems, falling, numbness and speech issues have started to increase again.

I finally got to go back to physical therapy about four weeks ago. That was my initial assessment. I then missed two weeks due to Reg being in the hospital again. I went back last week for the first day of actual PT. Part way through the appointment (again), the pt brought it to an early close. He said they can't do anything for me. The symptoms vary too much (based on the amount of physical activity) and the simplest exercises they have aren't safe for me. The pt watched me and could see me increasingly disconnecting as I would do an exercise on my left side. i.e. slower and slower, having to focus more to complete the move, twitching/tremors as I try to continue the exercise, not being able to multitask, having speech issues and then seeming to get close to blacking out.

They are listing the cause right now as spinal compression from the bad areas in my neck. My pt says he has never seen a spinal compression patient with my combination of symptoms. He said they are much more common in a stroke patient.

So, back to my GP again to try to get some answers. The pt was able to explain some new symptoms that I thought were bizarre. When I do dishes, the plates appear to be oval when they are actually round. On the occassions where I can do a little mopping or sweeping,the floor doesn't appear flat. The middle of it seems to rise up higher than the sides, with the difference increasing as I continue. The pt told me it makes sense with the location of my nerve compression. Bending my neck forward increases the pressure on my spinal cord. It was a real relieve to have an explanation for that.

I'm asking God to guide me through this and help me to be seen by the people who will be able to help me, identify the problem and treat it.

Thanks again for all your support. It has made this so much easier to bear.

Nancy
 
avatar
susiemargaret replied to regslady's response:
hello, nancy --

so good to hear from you. i'm glad that some things at least have cleared up. i'm still concerned, as i know you are too, about the unexplained ones.

as i understand it (see PS), "cervical myelopathy" is more of a description than a diagnosis. "myelopathy" is a disease or disorder of the spinal cord, which is a common complication of rheumatoid arthritis or osteoarthritis. "cervical" in this context means relating to the neck. so "cervical myelopathy" for you would mean a disorder of your spinal cord in the neck area. i think this is basically what we already know; the trick is finding out what disorder you have or why you have it. let's hope that knowlege will be forthcoming soon!

i send you caring thoughts. please take care of yourself and keep us posted on how you are doing.

-- susie margaret

PS -- i am not a medical person; i welcome, solicit, and indeed beg for correction, amendment, or replacement of inaccuracies in this post.
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
avatar
regslady replied to susiemargaret's response:
Sorry I've been away so long, its been a crazy few months.

My GP and neuro got together and decided that they couldn't decide what is wrong with me. They sent my file over to UC:Davis and I just got a call that they have accepted me (???) and will be scheduling an appointment with one of two doctors.

I'm not driving any more...confusion. I'm not cooking any more...burn my hands consistently. I'm not going anywhere without my walker now. I can get up out of bed and do a little bit, but then I'm so exhaused I need to lay back down. Where I used to clean the whole house, my focus is now just the kitchen, mainly just keeping the dishes washed. My regular doctor is trying to get me a power chair and trying to connect me with someone who can evaluate me for assistance at home.

Reggie has been in and out (and in and out) of the hospital. He's got an infection that they can't identify. It seems to respond well to antibiotics but keeps coming back once the treatment is stopped. Now he has a penicillan allergy, so no more of that!

I told my MD today that it was overwhelming to realize all the things I can't do. He told me not to give up yet. I'm not giving up but boy and I frustrated at times!
 
avatar
susiemargaret replied to regslady's response:
hello, nancy --

i'm glad to hear from you but am very concerned that you seem to be getting worse. frankly, i'm relieved your drs have sent you for evaluation at a more sophisticated facility.

i'm so sorry that reggie is having problems too. sometimes life is a lot harder than it needs to be, in my opinion.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
avatar
RedBear2005 replied to regslady's response:
Hi again, Nancy. I share Susie Margaret's concern, of course. It has long appeared to me that you're dealing with more than one medical entity at a time. Realizing that I may have asked this question before, have your doctors positively eliminated Parkinson's Disease as one of those medical problems? Your experience with the PT folks seems very representative of things that Parks patients report.

Do let us know when you have met for the new referral and evaluation.

Go in Peace and Power
Red
 
avatar
regslady replied to RedBear2005's response:
Thank you both so much!

I'm going to be seen by the movement disorders department http://www.ucdmc.ucdavis.edu/neurology/subspecialties/movement_disorders.html . Dr Wheelock http://www.ucdmc.ucdavis.edu/neurology/faculty/wheelock.html or Dr. Chang http://www.ucdmc.ucdavis.edu/neurology/faculty/chang.html .

Red: I don't remember you mentioning Parkinsons, but that doesn't really mean much to say I don't remember. I looked and saw that Dr. Wheelock does have Parkinsons as one of her specialties. I was told they aren't booking appointments until the end of this month but that I can call and try to get an opening sooner. Any recommendations on which of the two doctors if I am asked to choose?

As much as I would like to deny it, things are definately getting worse (except maybe the memory). I started falling every time I showered but that problem is solved now - I pulled the showerhead out the last time I fell! I still keep thinking I will get better once they figure this out, but my doctor and those around me tell me they don't think I'm going to get any better. Just for now, I'm going to let myself hold out hope that since they don't know what this is, they might be wrong about me not getting any better.

I'd love it if you could look at the dr links and let me know if I should push to see one doctor over the other.

Nancy
 
avatar
regslady replied to regslady's response:
I just read on two different sites about parkinsons. Sadly, that really sounds more on target than anything else that has been suggested.

Some things I don't think I mentioned to you that are symptoms. I have trouble swallowing sometimes and eating is much harder. I can't smile like I used to. It's like the muscles in my face are tight and I can't get my upper lip to turn up. Constipation and muscle tremors. The tremors in the legs have gotten especially bad on occassion. If they happen when I'm walking, I get this stiff, shaking gait and (I don't understand why), I walk on the balls and toes of my feet when those tremors happen...the heals of my feet just don't want to hit the ground.

I think it is time for me to write everything out agan.
 
avatar
susiemargaret replied to regslady's response:
hello again, nancy --

yes, write everything out, in chronological order, and make a couple of copies of it. also make of list of every med you take or have taken, the dates, and for what condition.

take these lists with you to every dr you see, and make sure they are put in your record.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
avatar
RedBear2005 replied to regslady's response:
Nancy, either of the doctors you've named appear to be qualified to work you up for Parkinsons and other movement disorders. There is plenty of experience there.

I also concur with Susie Margaret's suggestion. One of the first things the doctor will do is have you fill out a detailed medical history. You can help make that process more useful by writing out all that you remember of the sequence and development of your symptoms, as well as the medications you've been tried on.

One specific question: have you ever been tried on Levdopa-Carbidopa? If so, that would be a strong indicator that one of your previous docs may have suspected Parkinson's Disease as a diagnosis.

Go in Peace and Power
Red
 
avatar
regslady replied to susiemargaret's response:
I'm so glad that you both had me make out the symptoms list earlier, that will make things easier for me on this task.

I've never taken that medication. Since these symptoms appeared, only my rheumatologist added meds and that was just to address the pain from the neck damage. They said they didn't want to treat until they were sure what it was that they were treating.

I think its time for me to start mentioning things like "I feel dumb"..my brain doesn't seem to work as fast or handle complex things like it did.

As always, thanks so mcuh!
Nancy
 
avatar
susiemargaret replied to regslady's response:
hello, nancy --

on the not-thinking-as-well-as-i-used-to list, be specific! for instance, "i used to be able to do crossword puzzles, but now i can hardly make out a grocery list," or "i used to be a perfect speller, but now i can hardly write notes to anyone."

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
avatar
regslady replied to susiemargaret's response:
Oh, I just want to *scream*!

I called the doctor's office where they want me to get my second opinion done. Their appointment book is still locked and they told me it would be at least two to three months before I am seen.

I called my doctor's referral coordinator to see what my options are because I'm not comfortable waiting that long. I know my GP gave them another university hospital that I could get my second opinion back.

The referral coordinator called back and left me a message. She says that I need to research it on my own, find appropriate doctors, contact them myself, see if they will take my insurance, whether they will see me and if they are taking patients. Maybe I don't understand, but isn't that what the referral coordinator is supposed to do? I'm just not up to doing that.

I can't remember how long this is going on, but it seems like a long, long time and I still don't have a diagnosis. All this waiting while I could have received treatment. I'm worried I'm going to have permanent symptoms that could have been avoided or at least delayed if they had started treatment sooner.

this is so very frustrating.
 
avatar
susiemargaret replied to regslady's response:
hello, nancy --

i agree with you! what is the referral coordinator supposed to do other than coordinating referrals? why is it you are supposed to be doing her job for her?

i have two suggestions. first i would call your dr's office back and ask to speak to his nurse (not the referral coordinator). explain the situation to the nurse and ask for some guidance and some help. (see if you can find out the basis of this lack of cooperation. for instance, it may be the policy of your dr's office to do the referral coordinating for only one go-round, which would explain the lack of cooperation on this second go-round.)

second, if that doesn't pan out, call the referral coordinator back and ask politely -- not indignantly -- why she can't do this for you or if she could round up some names of drs for you to check out (ask specifically about the second univ hosp your dr mentioned). if she does that (see PS), i don't think it would be that difficult for you to check them out if you go very slowly, perhaps checking out one/day. make a chart that shows each one, whether they take your ins, if they are taking new patients (be sure to specify this is for a second opinion only), if they will see you, and when their first available appt is.

if you find someone or more than one who can take you earlier than the second-opinion person your dr recommended, go ahead and make the apptmt(s). frankly, tho, i would not cancel your dr's recommended second-opinion person or anyone else until after you've seen someone.

wherever you make apptmt(s), ask also to be placed on the "cancellation list," so that if someone cancels, you can take their slot. have you done this with the second-opinion person your dr recommended?

one more thing -- i couldn't tell from your post, but with the second-opinion person your dr recommended or with anyone else, do not wait for two or three months before attempting to make an apptmt. even tho they say they can't see you for two or three months, go ahead and make the apptmt now.

i hope this helps. go very slowly; if you get flustered, take several deep breaths, or perhaps rest a little between calls.

-- susie margaret

PS -- if the referral coordinator refuses to cooperate, call your ins co and ask for a list of the drs (i presume neurologists?) who are on their list of approved providers. that at least will give you somewhere to start.
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.


Spotlight: Member Stories

I am a 41 year old female and have been out of work since 11/2010 due to my heart and cervical spodlosis, and 4 hernicated disc 2 buldging 1 in my nec...More

Helpful Tips

Preparing for Your Neurology Appointment - Exam Part 1
You've waited weeks, or months, to get an appointment to see a neurologist. You're upset, nervous, maybe scared. You don't know what to ... More
Was this Helpful?
18 of 31 found this helpful

Related News

There was an error with this newsfeed

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.