Possible MS?

[Valkyrie568]

re-post from the Introductions thread.

I am so glad to have found this group. Limbo-land is a tough place to be!

I have had some odd things going on for awhile now, but I have a horrible job where I am on call 24/7 literally, so I have been attributing most of the strange symptoms to sleep deprivation. I have worked as a railroad freight conductor for the last 7 years and the hours are insane! I get a call telling me that I have 2 hours to report to work, and I have no way of knowing if I will be there for 6 hours or 15 hours. My waking hours can flip flop from day to night every other day so I pretty much live in a constant state of jet lag.

Starting in August, shortly after I got some sort of insect bite which caused me to have huge hives over most of my body, things got decidedly worse. At first my main issues were extreme fatigue, concentration issues and coordination issues. The hives were long lasting and I took two 10 day courses of Prednisone for the hives followed by 2 months of Allegra allergy medication, which is also a steroid. By October, the hives had finally gone away so I quit the steroid use and that seemed to coincide with the beginning of some other symptoms.

One night, more tired than usual, I took a cat nap while waiting for a signal, and when I woke up, I could only see out of one eye; it was like the other one had a patch over it or something! It only lasted a few minutes, thankfully. Later that shift, I had to walk about 500 ft. on the loose rock along the track, I honestly looked like I was drunk or something! I kept turning my ankles when a rock would shift unexpectedly and could not walk in a straight line. On my walk back, I was able to concentrate, look carefully at the terrain, and use a tool used to set brakes on the cars like a walking stick, and was able to walk almost normally.I am still off work until I can prove "fitness for duty". I have a hard time trying to assert that I am fit for duty, when I am well aware of how dangerous my job is. A loss of balance, or even slow reactions could easily get me killed. I am feeling better now, but I am concerned about what will happen once I get sleep deprived again. However, if I don't return to work, my whole family will be without health insurance. My husband is self employed and both he and my youngest daughter are 'un-insurable'. Even though I don't yet have a diagnoses, I probably am now, too.

I have had a couple of appointments with a neurologist who has done a great job getting my husband's seizure disorder well controlled. In talking with him about my medical history I discovered that I have had some suspicious symptoms that go back all the way to '04 including one incident of complete loss of sight in my right eye after first waking up. I have also had slurred speech, vertigo and periodic clumsiness that are greatly affected by my level of fatigue and a complete intolerance to heat. I also periodically experience my right foot going numb and tingly. It is not really the same as having itf all asleep, it is less intense than that. I had been blaming it on the uncomfortable locomotive seats, but as I started paying more attention, it would also sometimes happen on the drive home, and my car seats are not uncomfortable. Another example of symptoms being brought on by fatigue?

I had visible swelling and inflammation of my right eye during the exam and after doing the eye movement tests, etc, it was very painful for a couple of weeks. Turning my eye to the side felt like I was being stabbed in the eye.

I have also had a very hard time dealing with chaotic noise for the last few years. Modern movies with their imposing sound tracks drive me out of the living room. My family chose a sports bar for lunch last year and the multiple TV's going at once was too much for me. I had to leave before our food came. It is truly irritating, but it also actually makes my ears hurt. Strange.

One odd thing that doesn't seem to fit with MS, is that two years ago when I went in for a DOT physical, I had no reaction at all to the Patellar reflex test. The PA tried it several times and I believe I had no reaction at all on either knee. I remember thinking it was strange that it didn't even feel weird like it normally does and she just seemed to think it was odd, but didn't say anything about it and passed me on my physical. I didn't think much of it either, since she didn't say anything about it, but I guess I should have been more concerned. Apparently, an excessive reaction would be more expected with MS, but is it one of those things that can go either way? At this point I am wondering a bit about Wilson's Disease, formerly know as Psuedosclerosis considering my dad has 'atypical Parkinson's'.

The loss of vision thing happened two more times between my initial appt. and my MRI. The last time I was able to turn a light off and on repeatedly and confirm my suspicions that it is basically caused by my pupil being 'stuck' in a pinpoint position and unable to dilate for night vision. I could see okay with the light on, but when I shut it off I couldn't see a thing. I am a semi-professional photographer (vision issues do not bode well for this alternative source of income)  and it reminds me of a defective camera lens. It doesn't last more than a few minutes which apparently is not MS like, but my vision during this worst bout was blurry for over a month and I normally have 20/15 vision and I had a lot of trouble with suddenly forgetting words that I normally use. I have been struggling with a lot of aches and pains since October, too. Not just the normal ones that coincide with old injuries.

Another new issue during this time is being a lot more emotionally high strung than is usual for me.

I have been to see my PA two times in the last few years thinking I was just starting to get a bladder infection, but no sign of infection was found either time. I have noticed this a few other times but felt foolish enough that I elected to wait and see and it would eventually go away on it's own.

The neuro ordered an MRI w/ contrast of my brain and that came back normal. I am supposed to go back in Feb. for another MRI but he never said anything about an MRI of my spine. He decided not to do a lumbar puncture until after seeing what my next MRI looks like. He admitted that he was shocked by my clear MRI and told me he thought that there was still around a 20% chance that I do have it, which is a little higher than any of the things I have since read about clean MRIs and MS. Honestly though, that test result and the eventual abatement of my symptoms has left me feeling a bit like a hypochondriac. I should know better, but it just seems like if there is something wrong, there ought to be some scientific evidence to account for it. I've never had any serious health issues before I started living a life of constant sleep deprivation so I guess I am having a hard time adjusting to this new reality.

After doing some research into what else this could be, I am concerned that no one tested me for Lyme's disease or something similar. There are no known cases in Wyoming but there are over 100 other tick borne pathogens and I have seen 3 different doctors since my unknown insect bite and subsequent hives and no one thought that was worth checking out.  I am being tested for Tularemia later this week thanks to some info from Maria. Also, I had Mono in '02 at 34 years old and have been prone to frequent unexplained low grade fevers ever since.

If anyone has any suggestions I would be most appreciative of your input! It sounds like a lot of you have been stuck in limbo-land for a very long time and done a lot of research.  

I apologize for such a long post!

[Valkyrie568]

Thank you for the welcome and all your suggestions.

I will be making an appointment tomorrow with a LLMD. There are 2 within 200 miles, so that is good news.

My current neurologist is actually in the neurology department of a great sleep center. Even better yet, before he made the move to the sleep center, he worked in a town with a high concentration of sleep deprived railroad workers. He has testified against the railroad in numerous trials disruption of circadian cycles, and so completely understands the issues. He has assured me that I could get a disability for the Chrono-Neuro-Biological variant of Circadian Rhythm Sleep Disorder alone. I guess that is good to know if it ever comes down to that, but hopefully it won't. I had already planned on quitting in the fall of 2012 to go back to school for massage therapy. This unexpected time off work and subsequent medical bills are wreaking havoc with my timeline and budget however!

One thing that is very interesting is that I finally consented to allow my employer to have full access to my medical records because I really want
to go back to work one day per week. However the company doctor that reviewed them wants a second opinion before clearing me for work. I don't know if that is just game-playing on his part or if he actually saw something on the MRI that he thinks is pertinent. As much as I hate the invasion of privacy, it will be nice to get a second opinion at the company's expense.

You Limbo Land Veterans have been so helpful that maybe I'll be lucky enough to get some answers before I get too discouraged!

Thanks Again,

Valerie  

[TheLightSeeker]

Hi Valerie!
I'm glad to see such a natural and seamless fit,
you joining  our little community.
From reading your post I could see a couple
interlinked things going on.
The first and most evident would be what I suspect strongly:
A "Chrono-Neuro-Biological variant of Circadian Rhythm
Sleep Disorder.
The diagnosis is based on published criteria using International Classification of Sleep Disorders or the DSM IV-TR which in my opinion
should not be used, as there are too many errors and gaps.
A revised edition will be available sometime in 2013, but the ICSD is the golden standard and this should be the only choice!
Some of the classic symptoms:
-Poor Concentration
-Impaired Performance
-Decreased Cognitive Function
- Poor Psychomotor Co-ordination
-Insomnia or Excessive Daytime Sleep or Sleepiness.
-Functional Impairment
-Distress

The second and lesser evident but much more complex
factor would be an underlying pathogenic infectious condition
possibly caused by the tick bite - extremely difficult to detect.
certain tick bites carry more than one pathogenic infectious agents like borrelia, mycoplasma, babesia etc.Usually only LLMDs have the training
and guts- yes guts, as this is a dangerous and possibly career ending choice they make going against IDSA and CDC protocol in order to take  PROPER care of their patients- with most other doctors being clueless or
not willing to get involved (they'll never admit to it).
And the only Lab that can detect and verify presence of such invasive pathogens is IGeneX -the Golden Standard in testing for these.

Now, one other clue that is raising suspicion is the absence of findings
from your tests/MRIs. This is indicative of undetected underlying infections, based on anecdotal evidence with continious lack of any clinical or diagnostic findings, yet with such a symptomology that is consistent with these types of multi-systemic infections. As they say "where there's smoke, there's fire!"
You most vulnerable body system to my opinion is your nervous system.
Your likely CRSD being responsible for this, opened the door to the suspected underlying infection to invade your nervous system, as they follow the rule of targeting the system with the least resistance first.
Unfortunately these infections mimic over100 different A/I and Neuro-Degenerative Diseases, as they present the sufferer with ANY symptom
possible, affecting any organ and any system in the body!
You can see know, how hundreds of thousands of sufferers end up in Limbo for the rest of their lives, as these infectious conditions do not even get close to a diagnosis. So many people undiagnosed and even worse
mis-diagnosed are possibly suffering unnecessarily, as many of these Pathogenic Infectious Conditions can be treated successfully!
Check immed.org for further details.
They are many other possibilities of course, as there are so many variables. Personally, I would go to a Sleep Disorder specialist
to get a dx or to rule out CRSD.
My next step would be to rule out Lyme disease and or other infections.
LLMDs must be hard to find in WY. You may have to look at another state.
Do a search at ilads.org for more info and related links.
Pursuing this part is probably the most critical and yet, because of the
related complexities and difficulties, most people get so discouraged and end up giving up. The one thing that plays against sufferers, is  the
severity of their symptoms, the pains , the brain fog, the cognitive impairment, the associated depression and anxiety, the medications.
It is tough, but still very doable. Inner strength, Faith and a lot of support
from family and friends can make the difference.
Wishing you well.
I hope you find some answers soon.
Let me know if you need more details on anything.
God Bless.
Niko

[Valkyrie568]

Thank you all so much for the nice welcome. It really does help just to converse with other people who are going through this!

I have an appointment to be tested for Tularemia on Friday and I will ask for a referral to the Rocky Mtn, MS Center, specifically the  Neuro Ophthalmology Dept. but I would really like to have my next MRI done there as well. I read that their MRI machines are 2x as powerful as most and I don't know what the power was on the one I did in October. From what I am reading it is sounds like one of the best places to go to try to get to the bottom of this. I actually really like the neurologist I have been seeing. We have seen some very rude obnoxious ones for my husband's issues so it was so nice to find one that doesn't rush you in and out and never listen to you, but if there are MS Specialists available I am going to switch and hope for the best.

I just really wish that I could have made my own appointment when I called this morning. It doesn't make sense to me why I should have to go through my General Doctor when I already know that this is beyond their level of expertise.

Sarah: I am sorry to read from your journal entry that you are having to deal with all of this pain and uncertainty in addition to coping with a husband who isn't doing all that he can to help you. I hope something changes with that. With all you do for other people you deserve to have someone doing for you. Adding in what you must go through as a hospice nurse also facing your own uncertain health concerns...thank God there are people like you who can do what you do, but it has to take a toll!

Sidesteps: I read your post about your OCT being positive for early MS and yet they are still dithering. That is worrisome! It is so frustrating to read that early treatment is so important and yet apparently it is going to be very difficult to implement. My current neurologist said that sometimes if they start treatment at the Clinically Isolated Incident stage, it never progresses beyond that. I have to really wonder however, how many people are actually able to do that!? I hope your 2nd opinion allows you to move forward!

MrsAristotle: Your toe situation sounds purely miserable! I'm sorry you have to go through that. Do they ever give you steroids to try to shorten the length of these issues?

I didn't realize that PPMS was less likely to show up on a MRI than the other kinds. I sure hope it isn't that variety if I do have it! I suppose that a Clinically Isolated Incident is too much to hope for considering I have had things happening for a few years now. It is odd to me that you also had a positive Optical Nueritis test and yet again, that wasn't enough for a Dx. I guess that if you don't meet the McDonald Criteria  you are just left in Limbo-Land?

That is very interesting that your dad was at Easter Island during the testing. My dad was present for the Atomic Testing in Nevada in the '50's. He said they went and walked around all the neighborhood set ups, etc. after the bombings with NO PROTECTION! Both he and one of his brothers were there for that and I've heard a few family members say they are the only ones still alive and cancer free. I don't know if that is true, but it sure makes you wonder what other long term effects could have come from that!

We have a foal due in April, too. I am not nearly as excited as I would be if it were due in July or something :) The mare jumped the fence to get in with our stud and April is REALLY cold here, spring blizzards are very common unfortunately. I hope it works out better than I think it will.

Valerie

[MrsAristotle]

Hi on another note. With the MRI for example people with PPMS might never show lesions certainly not on a brain MRI AND MS lesions can show on the spinal MRI and not always in the brain MRI. Its a difficult one.

some MS lesions just do not show up if they are in the spine because they can hide.  

With RRMS you can have periods even long periods of feeling really well that is why it is called relapsing remitting......Some people have one big attack then never have another one which is called a Clinical Isolated event.

Stress and any autoimmune disease is a killer it can make you worse and exacerbate any symptoms you may have. NOT WORKING has just calmed your system down which is what it needed. A body is not made to work the way you were. Once you get yourself into a situation where your body is sleep deprived you can have diseases that will take advantage of this.

A human needs sleep to rejuvenate. IF you can change your job to the one you mentioned then i would do so.

I certainly think though with the eye problem you really need the VEP or the OCT test.

I was AMAZED when my VEP came back positive for bilateral Optical Nueritis because at the time of my two attacks of going blind i was told it was either low blood pressure or heat and the doctor never once bothered to check my eyes or my BP at the time lol. Good innit.

The fact I had this positive VEP (my left eye was definately in the range to get a diagnosis of MS) KEEPS me thinking that is what I do have.

I have given up now worrying about it, as there is nothing for me anyway. So I just get on with it and manage it how I can. Sometimes though it is hard especially like now when my toes on my left foot feel like someone has cut them all off and left the nerves exposed....................

My father was diagnosed with Lupus. I have every symptom he has even down to the feet lol...he was also diagnosed with cryoglobenimia.

My grand father had peripheal neuropathy and had pain in his feet and legs which made him become less mobile and i remember he had awful ulcers on his leg. Eventually and just before he died he was diagnosed with Parkinsons.

When my father died because of septis after a routine operation the specialist treating him for cryoglobenimia said they found no protein to indicate LUPUS or something like that, cant remember exactly but they didnt find markers for LUPUS in his autopsy, so he said he would be very wary of that diagnosis. My father was told he had LUPUS by the RAF medical and ministry of defence because he was one of Airmen who went to Xmas Island to see TWO LOTS OF HYDROGEN bombs go off.

Apparently if they gave him a LUPUS diagnosis he could not say he got it from the exposure to the tests.............

Now I wonder and have done for some time if he had MS. His symptoms were so typical of MS, they would come and go. I can remember him being well one minute and then ill the next and tired and going to bed at 7pm.

Anyway I am digressing sorry.

I wonder if you have a couple of things going on to be honest.

Good luck with your test. The deer fly carry Tularemia and boy can they bite just like the Stable fly. I note you have horses......

My daughters mare is due her foal in April we are very excited lol.xxxxxx

[Sidesteps]

Welcome Valkyrie, I am sorry you are here but glad you stumbled upon us.

I agree with Sarah ---- she couldn't have said anything better. :)

She is talking about me and the OCT. There is another but we haven't seen her for a bit. The OCT essentially measured the optic nerve, it checks for atrophy. They are saying that the OCT is far more sensitive even than an MRI and will likely become the leading way to detect early MS. My numbers should have been in the high 90's to low 100's but they were 86/82. Highly suggestive of MS and reflects atrophy of my optic nerve. It's a very interesting test.

I have had numerous vision issues - some are chronic, some have improved. I have had ALL the ON symptoms but strangely my two VEPs have resulted in negatives. It appears I've never had Optic Neuritis but I do have type 2 Trigmenal Neuralgia.  It through off a lot of the doctors as the eye pain lasted 10 months - it was constant then very slow got better. I had a lot more pain on eye movement.  

I would seek an Neuro-Ophth clinic that has an OCT near your area. If they have the OCT, they will have the VEP. The OCT is inexpensive and takes less than a minute to do. It was really neat to see the results. My Neuro-Ophth was very good at explaining everything to me.

I also feel the same about this forum, there is something about this place that feels like "home." We have all felt out of place and a hypochondriacs, you are not alone, but we do keep each other grounded here and look out for each other.

Welcome again, I hope you feel as comfortable.

[sarahw244]

Welcome to the forum!!!  This is a great place to find support, get advice, etc.

Sounds like you've been through the mill a few times already!  What a job you have.  I work on-call hours everyday as well, but nothing like you.  I could never manage.  I am just called everyday when I am needed, but never after like 8pm and usually never before 6am.

I was reading you post in the introduction thread and I agree with Maria.  You should see about getting a VEP set-up with someone.  While these are not always 100% accurate, they are accurate most of the time.  I forget the stats on it, something like 85-90%?  

There is also something called a OCT.  This test will basically show if there has been any thinning of the optic nerve.  There is another member here who just had one not too long ago.  Maybe she will come along and give you some more info on it.

The thing that sux about neurological problems is that you do have definate problems/issues but a lot of times there are no conclusive tests to give you a dx.  Also, many times with neuro issues, problems seem to wax and wane.  

I understand how it makes you feel like a hypocondriac, but please know that you aren't.  I think many of us here have felt that way at one time or another.  That's what so great about this forum.  We rein each other in and help each other keep things in perspective.

You can go over to other forums, such as the MS forum, and get advice too, but there's just something about on this forum.  It really gives you a place to "belong" when you don't really feel like you fit in anywhere.

Nice to meet you and welcome again!
Sarah   =D