Clean MRI, Abnormal Evoked, Referral to MS Clinic

[Maxo127]

Hi everyone, I would appreciate anyone's insight, knowledge or shared experiences in response to my story.

First off: I am a 21 year old guy with no serious health issues in my past.

My Story
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Relevant intro?:
8 Months ago I went on a family holiday to Mexico and got an intestinal infection (at least that is what the doctor there called it). I was puking and barfing for 2 days, and the Doctor at the resort put me on Cipro. By the time I left Mexico I felt 100% better but had lost a little bit of weight (6-8) pounds. [This part of the story may be completely irrelavant-- but then again because of timing-- it may not be.]

The Tingling:

1 week after getting home from Mexico I started to experience a symptom unlike anything I had ever felt in my life-- A tingling/crawling, feeling around my torso area and up the lower part of my chest and back. After about a week of experiencing that symptom I started to experience that same feeling in my legs and my arms and just about everywhere, including the sides of my forehead (my temple). It took me about 2 weeks, but I figured out that the tingling sensation was only occurring when clothing or linens were touching me. When it would occur around my forehead I was attributing it to piece of hair that went astray. Once I figured that out, I tried absolutely everything including changing detergents, not wearing cotton, etc. The only way I could not have this sensation is by being naked-- which isn't a reasonable solution unfortunately.

1st doctor:
I decided to go to the doctor (7 months ago) at my University's walk-in clinic. He immediately did a neuro exam and said everything seamed normal. He ordered blood work (which all turned out normal). The doctor felt that it was extremely unlikely that this was any serious neurological autoimmune diseases like MS. He guessed that this could be Neurodermatitis and prescribed me Elavil to hopefully get rid of the tingling. I didn't end up taking the Elavil because after I researched Neurodermatitis I realized it was much more of an itchy/rash involved problem; not a tingly crawly problem. I decided I would go see my family doctor. At this point I was also starting to experience muscle fasciculations (twitching) (mostly in my legs and shoulders).

2nd Doctor (family doctor):
My Family doctor immediately said the same words as the first doctor: "it was extremely unlikely that this was any serious neurological autoimmune diseases like MS", but for piece of mind he referred me to a neurologist and also ordered an abdominal and pelvic ultrasound to look for swollen lymph nodes. The ultrasound came back completely normal. He also ordered more blood work which came back normal.

New symptom:
I started to experience a new symptom while I was waiting (1 month waiting time) for my neurologist appointment. When I would wear pants I would some times get the feeling that my knees and shins were soaking wet-- when in fact they were completely dry.

Neurologist (3 months ago):
The Neurologist listened to all my symptoms and did another neuro exam (in which everything was normal). She ordered blood work (which came back normal) and then ordered an Evoked Potential Test and an MRI of my mid and upper spine plus an MRI of my Brain.

Test Results:
Blood work (for the 3rd time): completely normal
MRI of head and spine: completely normal
Evoked Potential Test: ABNORMAL results were seen in the nerve conduction to my legs. My neurologist expressed some concern about this and decided to order me another MRI for my entire spine (including my lower spine), and to refer me to an MS clinic in Toronto with doctors specializing in MS.

Test Results Round 2:

2nd spinal MRI: came back completely normal. Although this result is very encouraging my neurologist still thinks it can't hurt to go to my appointment in 6 months at the MS clinic.

Symptom Progression:
-I still have the tingling/crawling symptoms brought on by linens and clothes that first started 8 months ago. It hasn't increased nor decreased in intensity
-I still have more muscle twitches than I had prior to all of this starting
-I still have the wet leg feelings
-In the last two weeks I have had many bouts of light headedness. Almost everyday I have at least 3 occurrences of this.

Conclusion:
I have an appointment at the MS clinic which is in 6 months (yes...a long wait time). I am currently left with no answers to my symptoms, and although they are not debilitating, they are a HUGE nuisance and are causing me stress and loss of sleep.

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Thank you for reading my story. Please weigh-in, give your opinions, share your experiences, try to relate. I would truly appreciate some insight from anyone who feels they can relate to me, has experienced similar symptoms, and of course, from physicians.

[convince70]

Hi Sheryll yeah I've read some blogs where DX would take some years.  I have had this for about 3 months and it's making me a wreck not sure what years would do. That's why it's so surprising to me that my second neuro just poked my legs with sticks and pushed toes around and I guess based  on that and the brain mri and nerve studies he used the word guarantee or maybe it was qualified with 'almost guarantee' that I don't have MS and gave me zoloft.  What about cervical or spinal MRI?  He did not think it was necessary so of I go for a 3rd opinion and a spinal and cervical MRI not that I'm looking for MS but an anxiety DX without all the bases covered to rule out other things would not even begin to make my anxiety go away.
From what I've read on MS symptoms however it does not seem that your symptoms correlate much w MS.  I started w.dizziness, tingling legs  then spread to feet that's always sweaty now then all over muscle twitches that turned into wet cold patch feeling and now more of a tickling feeling of my lower half like that you get when you look over the edge of a tall building if youre afraid of heights along with crawly skin now all in the span of 3 months. Keep us updated as to your DX quest as I will do the same.  Many of these blogs leaves  with more questions than answers as most do not give you an update.  Take Care

[Winowich]

Hi, my name is Sheryll from Canada, and I too have had a hard time getting to the bottem of my irregular symptoms that seem to emulate MS. I am a health proffesional and I have gone to 2 different neurologists, family doctor, cariologist, nerve specialists, EEG's, 48hr and sleep deprived, also sleep clinic.....and all is normal..oh ya 4 MRI's later, spinal and brain. My symptoms are varied and seem to show up under sleep deprived and stressful days. However; I do become dabilitated for hours to days at a time, loss of feelng and balance in my legs, twitching in my arms and legs, fogginess of the brain, eye sight blurred, even passed out 2 times on the floor, with minimal warning. I too am frustrated, no diagnosis, or help at this time without the definative plaque presence. I too had the Epstiein Bar Virus at age 27, weird because usually a younger disease.

Also have hypothyroidism, hypertension, and slight asthma. So my family doctor has commited to the diagnosis pseudo MS, until further notice. unfortunatley my employer is reluctant to allow me to work until this is cleared up. ( no passing out on the patients you know), anyways...keep faith the diagnosis can take 5 years I hear, and I am working on a way to detect earlier the possibility of an MS diagnosis.

[SarahL2491]

I take Elavil but not for MS but have noticed that my "creepy crawly" s/s have not gone away but have decreased.  I did not connect this "dot" until reading your post.

I have never had mono but for about 3 yrs, when my lesions were the worst, I had very high EB levels.

We all learn so much from each other here!  Welcome to our little corner of cyber space and hope that you get some answers.

[convince70]

Hi Maxo I just recently found myself with much of the same symptoms as you and two neurologists have insinuated anxiety based only on normal brain mri, emg and nerve conduction. However I still fear maybe MS, did you ever get any further with your DX.  Any insight is greatly appreciated.

[Maxo127]

Sllowe,

That's actually a great idea. Since there is nothing I can do to investigate the possibility of MS in the next 6 months, I can perhaps try to rule out other things during that time. I will be seeing my family doctor in a week to get a prescription to calm some of my current symptoms, and I will bring that Idea up to him.

Thanks for your suggestion!

[Maxo127]

Hi Karen,

The very first doc I saw at the walk-in clinic prescribed me with low doses of Elavil for what he thought was a case of "neurodermatisis". Since i figured this was a definite misdiagnosis, I never really considered taking the drug. Maybe I should re-consider this as an option (at least in the short term).

If my main symptom (tingling from clothes and linens) goes away after taking Elavil, do you think that might be an indication that MS is even less probable? Or is Elavil often used to treat these symptoms in MS patients.

As for the fluoroquinolones, I have read all about them and found some really surprisingly scary stuff. I don't think I was given Flagyl. I was just given Cipro and Loperamide (which I'm pretty sure is an over the counter-- like Emodium or Pepto), but the first thing I was given was a needle. I'm not sure what drug was in this needle but the doctor said that it would immediately help my nausea and help me keep down the other two medications.

Thanks!

Max

[sllowe]

Yikes Maxo,

Sounds as if you've not been completely right since the infection. Did anyone referred you to an infectious disease doc at any point in this journey?

I'm sorry for what you have going on. While it may not be MS  - I hope you are seeing the right doc. Since the specialist is so long off - I wonder if your MD would consider sending you somewhere else to make sure this infection is really totally gone.

thanks for joining us,
-Shell  

[Karen99]

Have you tried taking the Elavil?  Low doses can help with your symptoms.

Speaking for myself, the entire family of fluoroquinolones (Levaquin, Cipro, etc,are poison for me.  As you indicated, you have found the problems these medications can cause.  Also, it is very common that the known side effects of the fluoroquinolones can begin weeks after stopping the medication. Quite a few of the medications in this family of antibiotics have been pulled off the market over the years.

Were you given Flagyl too?  

Hope you get relief of your symptoms and get this figured out.  

[Maxo127]

Thanks for your insight Bob. I had never heard of ADEM before.

One thing that sketches me out even further now is that I had Mononucleosis when I was 15. Thus the Epstein-Barr Virus is in my system.

[COBOB]

A common neurologic post-viral condition is ADEM - Acute disseminated encephalomyelitis.  It is pretty obvious on MRI, as I understand it.  There are other post-viral syndromes.  There are also some researchers that believe MS may start with a given genetic predisposition and exposure to a viral trigger.  Epstein-Barr Virus (EBV) is a member of the herpesvirus family.  Several herpesvirus are contenders for viral triggers in MS.  

There are several folks here that have spent a good amount of time in the watch and wait mode waiting for MRI lesions.   You just have to hang in there and work with the process.
At least they seem to be listening to your symptoms and referring you to specialists.

Bob

[Maxo127]

Ya, I mentioned Cipro and the whole ordeal in Mexico because:

1) From Google searches I have found a lot of people who have had long term effects after taking Cipro-- but yes you are right, they usually started while taking the meds, not a week or two afterwards.

2) My symptoms may be caused from a virus which is still in my system...and could be completely unrelated to MS or any autoimmune neuro disease.

3) I have heard that often people have there first bouts of symptoms with MS shortly after contracting a virus or infection...so I feel that the timing of my infection in Mexico might strengthen the idea that my symptoms could be MS related...I guess I was hoping to get feedback from people on whether or not there first symptoms of MS started right after a bad infection or virus.

Thanks for your replies so far!

[Sidesteps]

Welcome... there are many of us here that are in limboland and share similar symptoms. I think it is good you are being referred to an MS specialist. I had similar symptoms and see a MS specialist director at the end of the month. My MRI's were "supposedly" (I think some things were missed) clean but some of my tests and clinical examinsations were abnormal.

My symptoms started with myoclonus increases (the sleep starts started ocurring more and more) and fasciculations inceasing to an alarming rate. The list of symptoms increased to visual issues, swallowing issues, facial numbness, dizziness, fatigue, creepy crawling and wet/cold sensations, shooting pains, balance, coordination and a whole list of other issues. I felt sick for about 2 months then began to feel better. I've since had two more "flares" I believe with facial symptoms in the Spring and hearing symptoms early this Summer.

I take it you mentioned Cipro in thinking that someone here might have had experiences with the side affects? Peripheal Neuropathy and the warnings associated. I had been exposed to Cipro numerous times over three years due to having about 15 UTI's. I did bring up the studies to my Neurologist who quickly told me it wasn't related as those tend to start while on the medication and not after. After nearly a year of symptoms and tests indicating my peripheal nerves are normal and an increase in issues. I believe him. :)

The abnormal EP indicates latency and is an indication of something going on that your MRI didn't pick up on. I'm glad they are referring you to a specialist, it's better to get that appointment and follow through even if your symptoms subside then not and end up being further out if something else happens later.

[HVAC]

I am sorry for your concern. Where I am  in the U.S. with two big University Hospitals it takes at least six months to see a MS Specialist. Usually more since in the world there are few MS Specialists and they have heavy case loads. Most things Neurological are not deemed emergencies. There are many things which have the same symptoms as MS which take Doctors to figure out. I do not know how easy it is in Canada to get to see another Neurologist sooner? When I was being diagnosed my appointments were six to eight months apart because the Neurologists wanted to see if my Neurological tests or MRIs changed.