Twenty-Two Year Rollercoaster Ride

[srohrer]

Hi, I’m a 52-year-old female, grew up in New England, and was diagnosed as “probable MS” back in 1990.  Over the years, I have never been treated for MS.....just the symptoms.  Here are my symptoms:

• Vertigo, motion sickness, nausea, loss of balance – Began in 1989.  Nausea responds to Dramamine, which I continue to take daily.  At the time, there was no conclusion by the neurologist and ear doctor.  I continue to suffer from this and my balance has gotten much worse over the years.
• Tingling in feet and legs – Began in 1990 in my left leg and foot.  Over the years, I have had bouts of tingling in both my feet and legs.  These bouts have gotten longer and more frequent over the years to the point where my legs and feet tingle and buzz most of the time.  There are also times recently when the tingling has risen to a point just below my waist.  My last exam (a couple of months ago) by the neuro showed that I have lost feeling in my feet and he suspects this is adding to my difficulties with balance, especially when I close my eyes.
• Migraine – Began in 1987.  I have the migraine aura where I lose my vision, but rarely have the headache.  These usually come in waves where I might have an episode every day for a week or so and then nothing for several months.
• One-sided Facial Pain – Began in 2003 (I think).  Was on the right side and was often set off by cold.  It finally responded to Lyrica.  A few months ago, I had facial pain on the left side and behind my eye that was set off by light touch to my cheek.  It comes and goes for no particular reason.  Also responded to Lyrica.
• Double Vision –   Began a few years ago and is pretty much constant.  Made worse when I look to the side or am tired.  I now have prisms in my glasses.
• Tremor – Within last 20 months, I have developed a tremor in my hands, made worse when moving them.  The tremor is also worse if I forget to take my blood pressure medicine.
• Wet/Ice Cold Sensation in Right Thigh – For the past several weeks, I have had an odd wet/cold sensation on the outside of my right thigh.  Occurs throughout the day.  Not sure what sets it off.

Throughout the years, I have had several MRIs that were abnormal and showed lesions on the brain, but not conclusive for MS.  When reviewing the most recent MRI a couple of years ago, my neurologist says I have “grown into” my MRI, meaning now that I am older, the number of lesions is not considered abnormal.  I have never had an MRI of my spine.
  
I have had the various evoked tests and they were normal.  A spinal tap many years ago showed elevated levels of protein, but no bands.

I’m thinking that with the new symptoms I’m having recently, maybe I should ask for an MRI of my spine?  My neuro has told me within the last few years that he now does not believe I have MS.  At the time, I was very relieved.  

With all of the symptoms I have had over the years and with the recent addition of new and/or increased symptoms, it makes me wonder, again, if I actually do have MS.  Is it possible to have MS and not have an MRI that the neuro thinks confirms MS?  If it’s not MS, what is it?  It’s been a twenty-two-year rollercoaster ride for me…..I want off!   Believe it or not, a diagnosis of MS would be such a relief at this point!

I hate going to the doctors and avoid it if at all possible.  These new symptoms concern me and don’t seem to be going away on their own.  I have another neuro appointment in a couple of weeks.  I've never been very good at telling the doctors exactly what is going on with me unless they ask as I don't want to appear to be a hypochondriac.  Do you have any suggestions for me?

[srohrer]

I am writing back because I, personally, have had so many questions about my health problems, have been searching the internet for someone who may be going through the same as me, and I have noted that so many people on various forums do not follow through and tell what has happened, or not happened, to them.  So here goes.....

I went back to my neurologist and had an MRI done of my neck.  It didn't show anything except for degeneration accountable to my age, I guess.  Since I last wrote, my tremor has extended to my face, my torso, my legs......sitting up without support has, at times, become a challenge and I'm so tired by the afternoon......

I met with my neurologist today.  Even though my mri and other tests do not substantiate that I have MS, he agrees with me that I need to be treated as though I have MS, even though my MRIs,  spinal tap and other tests are not conclusive for MS.  Therefore, I am going to receive IV steroids and then a medication to treat MS.  

Since the tests I have received over the years are not conclusive, I still question, "If this isn't MS, what is it."  

I must confess that hearing from the neuroligist that it is appropriate that I receive treatment for MS is a relief to me.  It is somewhat reassurring to me that Iam finally going to be able to do something to hopefully slow whatever it is that is affecting me.  Why is it, then, that I still desire to receive confirmation from the various tests as to what it is that I really have?  Why can't I be happy with the help that I am receiving that is so much more than I have received over the years?  

I am going to, once again, have another MRI of the brain that I am hoping, or maybe not hoping, will confirm the diagnosis.  In my mind, .......why should I care what the results of the tests are if the treatment I am receiving may help keep me from getting worse?

I'm not looking for a response from anyone.....I'm just throwing this out there......crazy, huh?

[torikat32]

Hi
I think you pretty much wrote what I have been going thru myslef for 7 yrs and still no diagnosis just more progression. where in new england are you? I am from Rhode Island
hopefully your mri you will find something out in the mean time welcome to this wonderful very supportive forum .

best wishes
Kat

[Sparkysarah]

Hi Sandra and welcome to the forum. I am glad that you have been back to the neurologist and hope that your wait is not too long for the results. It sounds as if it will actually be a relief if you get a dx but I am sure this would bring up other emotions so be prepared and try and keep an open mind.

It sounds as if you were able to be assertive but one of the best ways to find your voice is to always own what you say e.g. I feel concerned that ...... rather than "you make me feel". If you are able to express your emotions in an assertive way then you are straight away taking control and using your energy in a positive way. Also another technique is called the broken record where you stay calm but just repeat what you have asked several times if someone does not answer your question until they eventually hopefully address what has been requested. This works well if you are taking something back to a shop or want to see a manager and the shop assistant refuses to get him/her.

Anyhow let us know your results and I hope you get some answers.

best wishes

Sarah

[srohrer]

Went back to neurologist.  Without me asking, he sent me for an MRI of my neck.  That was a relief that I didn't have to ask!  The MRI was Friday and I'm now waiting for the results.  I'm not expecting them to find anything, but if it is MS at least I know I'm not nuts!  Pretty crazy to hope for a diagnosis, but at least I would know........

[HVAC]

Neurologists do Specialize and few in MS. I went to one who specialized in headaches and she missed the MS lesions. She sent me for tests which all pointed to MS but said I did not have MS. My MS Specialist looked at her notes and shook his head.

[addicted2harleys]

Hi, Sandra-

Stupid roller coaster!  Yeah, I have to agree, it is time to get off.  You have received some great advise and anything I would have said has already been said. lol

So, I will just welcome you to our forum.  There are many, many great people here.  :)

Addi

[sllowe]

Your very welcome, and you don't have to change who you are - it's ok.

The Consortium of MS centers (www.mscare.org) has a spot on their website where you can look up MS centers by state:

I hit in CO and these 6 for you. That way, you don't have to leave your comfort zone and ask a lot of questions, you can just mention you found a couple places you are considering making an appt. with for a 2nd opinion on your MS. And, if you are super uncomfortable, go ahead and just call one of these for the 2nd opinion.


~Can Do Multiple Sclerosis  970-926-1290  27 Main Street Suite 303, Edwards,
Colorado, 81632  (not sure if this one is a docs office or not)

~Colorado Neurological Institute MS Service  303-788-7667  701 E Hampden Ave Ste 320,
Englewood, Colorado, 80113,

~Patricia Fodor, MD, PC  719-598-9991  7606 North Union Boulevard Suite G,
Colorado Springs, Colorado, 80920, (not sure if this is an MS specialist or not)

~Rocky Mountain MS Center  303-788-4030  8845 Wagner Street, Westminster,
Colorado, 80031,

~Rocky Mountain MS Center at Anschutz Medical Campus  303-724-2199  1635 Aurora Court, Aurora, Colorado, 80045,  

~VA Medical Center - Denver  303-393-2819  1055 Clermont Street PMRS 117,
Denver, Colorado, 80220,

[srohrer]

Thanks to you both for responding to me.

Alex, I can't believe it took 40 years for a diagnosis!  That's a long time!

I am being seen by a neurologist, but I don't believe he is an "MS specialist."  I guess I didn't realize there was such a thing.

Sandra  

[srohrer]

Thanks for the quick response,Shell.  

My symptoms have been mild enough over the years, that I have been able to pretty much keep them a secret from most people.  When I first received my "probable" diagnosis twenty years ago, there was no treatment that would affect the course of the disease and because my symptoms came and went, I would just wait it out until I got better.  

Now that my symptoms don't seem to be going away and seem to be getting worse, I am concerned that I may be "missing the boat" if I really do have MS.  I have been doing a lot of reading and I now understand that there are drugs that could possibly help.  

I know I just need to get a backbone and ask questions.  It's just really hard for me to be assertive; that's just not part of my personality!  :)

Sandra

[tiredaz]

I feel as if I had written that.  Sounds so much like what I've been through.  I'm hoping you find answers and solutions.  Be sure to share them with us if you do.  You'll be in my thoughts today...hoping you have a good one.

[HVAC]

I can sympathize. I have a slow progressing MS and it took over 40 years for a diagnosis.

Is your Neurologist a MS Specialist? There are some forms of MS which are much more subtle and usually do not get a confirmed diagnosis until later in life. This is unfortunate if you do not fit the McDonald Criteria to a tee some Neurologist's will not diagnose it. Even with the Specialist and all my tests abnormal it still took another year for my diagnosis.

Good luck.

Alex

[sllowe]

Hi there,

Absolutely you should have your spine imaged. If there were concern for MS this should already have been done - I'm sorry you didn't get that care. You absolutely should have.

I'm definitely in for helping you get off that rollercoaster. You won't sound like a hypochondriac to respectfully ask for your records and lab results and imaging reports to seek a 2nd opinion.

The symptoms you are experience mean something - whether that is MS, or a mimic, or something else altogether. If this doc is unable to provide you some insight after all these years don't feel bad, just leave.

I don't mean to come across as telling you what to do - but feel strongly it would be in your best interest to get a fresh opinion.

Hope to help,
-Shell