Is it possible to have multiple symptoms accummulate over time?

[Blueeyeswink]

Is it possible to accumulate multiple sytems over a period of time?  I am not yet diagnosed and don't know where the search will lead.  I do know that my world has been turned upside down more so since 2006.  The short version. I was relatively healthy other than asthma and hypothyroid prior to 2006.

I got ecoli (the really bad strain) in 2006 and complications followed that required hospitalization.  Plural effusions, collapse lung and full of fluid.  I also inherited some bad mid back/rib joint/rib cage type of pain.  From what I am reading lately the MS Hug describes this very well.  I can honestly say that I have yet to have a pain free day since.

I also ended up with an overactive bladder and little accidents now and then.  So this got me a referral to a bladder guy who comfirmed overactive bladder and an explanation about how women are made differently and to make sure my bladder was truly empty before getting up and walking away.  Not very useful. I since have periods where there is hesitancy when going to washroom.  I read a lot now!

I started to have these bad headaches. I thought they were sinus related and would medicate accordingly to no result.  When I pressed my I brow I would get such a pain behind my eye.  This would last a day or two and done.

I also had a little tremor prior to 2006.  In the last two years this has grown more noticeable.  They thought it was my thyroid but turned out that things were at acceptable levels,so that was ruled out.  Another dead end...hence I still have the tremor with no real explanation.

I was also sent to a gastro guy because I was having bowel issues (extremes at times and constipation which was aggravated by the narcotics they were giving me for the pain). He looked me over.  Said IBS normal for what I went through and said it would likely correct  itself.  Not...it is pretty bad and what I read describes it well. I won't say more.

In the last year I am getting episodes where I am being awaken by numbness, heavy and painful to some extent.  Two times it was half of one entire side.  a couple of times waist down on one side.  and numerous times one or both arms.  It clears up but leaves me with a nagging tingling for a day or so.

Then two years ago I went through a spell of dizziness.  I ended up at my dr's.  She said oh it's vertigo.  The end.  Well, it happened again in the last couple of weeks. It was more severe and leaving me nauseaus and clumsy (tripping over my own feet).

My energy level has been on a downhill spiral...there is much that I can no longer do as it aggravates the pain around my torso (shoveling, lawn mowing, folding laundry, vacumming etc).  My partner has picked up alot of these now.  

My memory is slipping away from me...I am forgetful...I get a lot of time I can't account for at work...takes me much longer to response...I run into people that I recognize but I can't retrieve their names.

It just seems like my list is getting longer.  I finally saw a neurologist two weeks ago.  thanks to my chiropractor urging me to request a MRI brain scan I have an appointment on the 28th. I am real afraid and anxious. It is awful to say but part of me hopes to be loaded with lesions. this way I will know what to do.

I have tried many things and have run out of options that are more natural in nature.  Some things help but limited.  I go the to a pain clinic for the rib thing in the last two years but not much result so far.  Alot of pain for little result.  They just did T8 yesterday, slight improvement..will see....they burned the nerve and injected a local and steroid...

We don't have the best where I am but I have to try.  THis will likely be it unless something specific gets recommended by the neurologist. The pain is not worth the outcome.  

anyways, I was wondering if it is normal to accumulate so many types of symptoms.  I found this site from all my googling and thought I would do some reading.  It is very interesting and I can relate well.  Now to actual find out definitively...time will tell.  I just need to make sense of things.

Thanks for listening.

[Blueeyeswink]

Hello Addi...I hope you had a good day...This is the third time I write this response.  I keep forgetting to push post!

Anyways, it is very cold in my part of the world.  They said on the news tonight that we may get some warmer weather.  I will believe when we get it!

It was an MRI of the brain.  I had an MRI of the spine a year or so ago.  I was appauled to find out from my Neuro1 recently that my dr didn't even include the area of concern.  I tell you the health care system can be very frustrating.  YOu have to be so on top of things and sometimes I am so tired that I don't think clearly and trust the health profession to act in my best interest.

I can't believe you fall asleep in that noise.  I guess it can become a hum.  I found it a bit wierd.  The vibration was annoying me.  Perhaps because I was having some bad tremoring that day.  Not sure!  also my neck was killing me and to hold still for 15 minutes, well it just fell even so much more stiff.  At this point I will do almost anything.

I don't have a f/u appt with Neuro 1.  She said to get my appointment once I get my EEG appointment.  She wants to meet with me once she has both results.  So they told me to call them as soon as I get the EEG appointment.  I haven't heard yet and so I am going to call Neuro1's office to make sure no one forgot.

Take care and looking foward to hearing from you.

[addicted2harleys]

Hey there, blueeyes-

Thanks for the update. They just scanned your brain this time, right?  This was your first time in a machine, too?  I don't mind them.  I don't know how I do it with all that noise, but I always fall asleep in them.  lol  I hope your experience was not too bad.  

Do you have a follow up appointment with your neuro to discuss your plan of action and discuss the MRI?

Addi

[Blueeyeswink]

Hello addi...how are you doing? I went for the MRI last night.  No contrast used.  Questioned it but only techs there and they didn't seem to be able to answer adequately.  My dr was suppose to fax them extra details last week but according to them this was not received.

They say up to 10 days until results are sent out.  tic toc.  Will see if this leads anywhere.

Just thought I would update.

Take care.

[addicted2harleys]

Hi, blueeyes-

Yes, you are more than welcome to ask me for feedback either privately or here on the list where others can give theirvopinions as well.  Whatever you are comfortable with.  

Like you stated above, the real digging is just starting.  So, with that in mind, get as much together that you can remember from when everything started and from here on out be sure you keep things up.  You are allowed copies of all your medical records.  Ant ER visit or hospital stay.  Just contact that hospital to find out how to get your records.  Any tests that you have had, call the place that did the test and request record.  Any specialist you were referred to...call them and request record.  Some you may have to pay a small fee for, some you won't.  

Keeping a journal is wonderful.  Most doctors won't take the time to read through it, but it may help you tremendously with keeping up with your symptoms.  Keep that up.

And keep digging.  You are your best advocate!

Addi

[Blueeyeswink]

Hello Sumanadevii...thank you for your response. Sounds like you have a very attentive doctor.  That is a good thing!

I think that my timeline may be one that is by year as well as I was not thinking I would need the information in the future.  I have my referral dates to various specialists and that should help me organize things in clumps of time. I did start drafting up my timeline last night.

I will let you know how it turns out. I may be that I may need some feedback.  Would that be something that you would be able to provide?  Thanks.

Take care!  Blueeyeswink

[Blueeyeswink]

Hello Addi...I hope you are having a good day. I started to type out my timeline last night.  I will definitely go to your profile to check out the timeline you have as I am not certain on how to organize the information.  I only started to journal in the last year and so anything prior to that I can only clump into a one or two year block.  I do have the dates of referrals to the specialists I have seen and to the pain clinic. I was going to go with those time frames and include what led to those referrals.

Once I am satisfied with my draft I may want to share it with a couple of you who have one to get some feedback.  Would that be ok with you?

I hope to chat with you some more.  Have a good day!  Blueeyeswink

[Blueeyeswink]

Hello Aldez...thank you for sharing and for the website resource.  I will certainly check it out.  I can only say that it would be really nice to know what the heck I am dealing with.  I think that the neuro 1 that I just saw has the MS background.  It seems as though they work as a team as she indicated that if need be she would do consults with other colleagues.

The good part with the one I am seeing is she has research background regarding bacteria and infectious disease and its impact on the CNS.

Thanks for connecting.  

[Blueeyeswink]

Hello Ren...thank you for being so helpful...Aldez, Addi and Sumanadevii have also sent some good tips and information. I'll have to connect with them later today. i will try and find Shell's timeline as well as visit Addi's place.

I don't have a confirmed appointment yet for my Neuro1 second appointment.  I know they will be calling me with two appointments - one for an EEG and the other one to see her to review the results of that test and the MRI brain scan.  She indicated she wanted to see me in March. I'll follow up for that one.

I would be entirely shocked if I got any kind of quick diagnosis and I am not expecting it to roll out that way. In my opinion the real digging is just starting.  The last fours years have been reaction to symptoms rather than probing.

I got my timeline started.  I tried to be to the point and not overly wordy.  It looks disorganized but then that is how things feel in my head somedays.  I'll worry about the lay out later. I just thought it was a good start.  I don't have all my details but I do have broad timelines based on referrals I have had.  I'll build around that.

I have also been keeping a journal in the last year.  I try and jot down episodes where I wake numb, pain level and how I am feeling or falls etc.  I have done not too bad.  

I like the idea of the calendar on the fridge thing.  We have one of those.  I will try and use it for this purpose to.  We started doing this becaus I have become so forgetful and so we write our appointments or outings.  I forget sometimes and so we do a review once a week.

In the last two months I have missed a couple of appointments (massage, doctor).  Not good because sometimes it can be a wait for the next appointment. I have a blackberry that I use too for reminders. I notice that on bad days I go into avoidance of reminders.  I find it overwhelming if I am low energy and so I am trying to find a happy balance that works and that gives me focus and consistency.

Where am i looking for Shell's timeline?  

I am finding this site helpful and you are right there is a wealth of information.  If nothing else it is helping me put words to some of what I have been experiencing.  I.E. the MS Hug/Girlding.  Even if it is not MS I at least have words to describe how it feels other than really painful.  It is also very affirming that such a pain exists. Some days I think maybe I am imagining all of this. I know I am not.

About getting my reports and test results...I may have some but most of these things are with my GP.  She does send these to the referrals.  I guess I wasn't sure if I could have all of that.  I will start with the timeline and I will start asking for copies of the results or reports.

[Sumanadevii]

My very first visit with my neuro I made a timeline by year ...symtoms and different specialists I had been to visit.  Today, I only share with her anything new that comes up that interferes with my life.  I would rather she have the time to examine me and share information on new drugs that are becoming available.  Of course, I just happen to have a neuro that will actually call me if a drug is not working or I need an increase in the amount. But I do think it is crucial that for a first visit that a good timeline is presented.

[addicted2harleys]

Hi, blueeyes-

I just wanted to welcome you to our forum.  I see ren has done an excellent job of explaining how everything works, so I don't really have anything to add.

I agree with ren about doing the timeline, especially since you are forgetful.  After my timeline was completed I was truly floored.  The timeline actually helped me immensely to see my patterns and all that has gone on in the six years I have been having issues.

I give a copy of my timeline to every new doctor I see.  And there has not been one who hasn't praised me on it and all have taken the time to actually look it over.  

I also urge you to get copies of ALL of your medical records together...test results, MRI discs and reports.  Doing this has been extremely helpful to me, too.

If you go to my profile I have pictures of my medical record book.  It is just the way I did mine but it gives you an idea on how to go about making one if you are a visual type person.  In my journal entries you will find a copy of my timeline, too.  

Anyway, I have those visible to show anyone who is interested in getting their medical stuff in order...one way to do it. :) I also urge you to definitely have a notepad of some kind with you at all times to jot things down that you might forget.  I have a couple of them, regular and pocket size, and it has helped me so much.  

So, again, welcome to the forum!
Addi

[aldez]

Hi Blueeyes, I have been living with MS for the past 14 years and know how scary it can be. Besides telling you to see a neurologist that is familiar with MS (Some are more that others) you are welcome to visit my site: http://ms-multiple-sclerosis-syptoms.com

I started the site to try to help folks newly diagnosed with the disease, explaining its symptoms, how does it starts, who gets it and information that other old timers like myself might find useful so, I hope you find helpful information.  

Hope you feel better and wish you the best, be well,

aldez

[rendean]

Hi Blueeyes,

No , it's not too late too make a timeline. A diagnosis (dx) usually takes a while for most people. A few lucky folks get a slam-dunk dx but most of us have to wait for our dx.

The timeline might have even more value to it now that you have met with the doc and have gotten the preliminaries out of the way. I'm not sure if you  noticed yet, but there are several Health Pages regarding an MS diagnosis. The bottom line is that it is a disease of exclusion. Everything including Lyme disease, rheumatological diseases (Lupus, etc) and all other MS mimics need to be ruled out.

I work on  a jot it down time of manner too.  We have a family calendar hanging on our fridge and I scribble  symptoms and notes on it and then review them in between doc visits to provide a new list of issues or to clarify a pattern. My memory is getting worse so when the right leg hurts  pops into my mind while cooking dinner, it helps when I can't remember when it was or how long ago it occurred.

I realize there is a lot of info in the Health Pages but do read what applies to you and you may find some good advice that came form years of collective experience.

When is your next appointment? Shell did an example of a timeline on her response to dannyboy which was just this past week. BTW, id your post slides to the bottom of the page and doesn't get answered, please do not take offense.

Two reasons. One is most people will only offer advice on subjects they are familiar with and two, sometimes the pace is frenetic on the boards and each new post drops yours one spot down the the page. If this happens just "comment" on your post and write "bump" and it will come back to the first page. Unfortunately, most people don't look past the first page. Also, the weekends and holidays tend to be slow for activity.

Hope this short primer helps. Ask  if you'd like any more tips or information and we'll try our best to get you an answer.

Ren

[Blueeyeswink]

I went to the link you shared with me about pointers for your appointment.  I never did get to doing my timeline  (lack of energy would be my only excuse).  I thought of it but did not have it for the first appointment.  I know we covered a lot of ground in the hour and I know I forgot things.

I have been jotting things down randomly since and wanted to pull things on a timeline for my next appointment.  Are we out of luck if we don't have ourselves organized for the first appointment?  IS it worth doing one for the second visit?  

I don't do well on the spot and things come to me later.  Sometimes much later!

[Blueeyeswink]

Hi Ren...I got your note...and your response to what I posted last night...Thank you so much for remembering and for the extra effort you were about to make.  I don't quite remember the steps I took to post my note though. I need to remember to right things down but not used to that.

I appreciate the link too and the pointers.

I should clarify, I am not looking for a diagnosis.  I know the e-coli was a beast separate and of itself.  I have concerns of these other issues that are arising. At first I dismissed things to stress, fatigue, clumsiness, getting older (50).

I think I would fit in the limbo category at this moment.  I find that it takes a lot of energy to pursue these issues.  I have been reading up on things only in the passed month or so, an attempt to make sense of things.

Oddly enough many of my querries were pointing me to ms related links and sites.  For the first time in the last few years I have found info that actually helps me express what I am experiencing.


I just know that things are not getting better.  Work is becoming more of a challenge.  I keep feeling like my boss will find me out one day and give me the boot.  I used to produce so much and now it takes forever to complete tasks.

[rendean]

Hi Blueeyes!

I thought you had given up on us. I I had just copied your original entry and was going to paste into a new entry for you  but you did this yourself. Quite a good summary.

You asked if someone could have all of these symptoms? Yes and no. Some sound neurological and others (E. coli, etc) do not. We cannot diagnose you over the internet and we are not doctors, we are just people who have MS or  MS -like symptoms looking for an answer aka Limbolanders.

Ask for clarification on anything you need to know. I'll re-read your post of symptoms again in the late morning or afternoon but I'm sure others will pop in here to welcome you . We have members from all over the world, so it is quite a diverse group of people.
Have had a long day so I need to close for now.

Ren

Our Health Pages have a wealth of information on a wide variety of subjects. Many of them were written by Quix, a retired pediatrician and the other pages are written by our other many talented members, engineers, biomedical professors, nurses, etc. One of these subjects is how to make a timeline for your doctors to see. You are already on a good start.  There is a Health Page on what and what not to say at a doctor's appointment:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

I left you a note on your Profile page and explained the Notes versus Private Messages concept we use. Please remember this a PUBLIC  forum so anything on this forum or in your notes can be seen by anyone over the internet. We usually refer to doctors as neuro #1 , neuro #2, etc. Yes, many of us have had several neuros before a definitive diagnosis is made. Dr. L or Dr. K is fine too.  The Health Pages also  have a list of abbreviations we use on here.