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.
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.
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!
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.
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.
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.
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,
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.
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!
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.
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.
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.
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