Could this be MS/Lyme?

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New Member

Date Joined May 2011
Total Posts : 14
   Posted 5/5/2011 5:40 AM (GMT -6)   
Hi, I've also posted on the Lyme forum, as I really don't know what is causing my symptoms.
I apologize in advance that this will be a long post. 
about 17 years ago, I woke one morning and couldn't move my legs.  The doctor was called, and I was sent to a specialist, who performed x-rays (I don't think MRI's were used as extensively back then), but no explanation was ever forthcoming.
about 5 years ago I had a few things happen, which is why I'm considering it could be Lyme - I developed an all-over body rash and then joint inflammation which subsided in weeks; both were attributed to viral infections.
Then about 3 years ago, I began with a whole host of troubling symptoms, from which I still suffer:  I developed a roaring, vibrating tinnitus in my left ear, dizzy spells and left sided headache/eye pressure.  I had an MRI which came back normal.
I woke up on two occasions, about a year apart, with out of focus, blurred vision, which came back to normal after a few hours, leaving my eyes painful.  I now sometimes get blurred vision, and have noticed that my left pupil dilates far more than the right one.
At about this time, I also began to wake up feeling the life drain out of my left arm, and occasionally my left leg.  This now happens frequently - the sensation doesn't return for hours properly some nights.  I now have frequent pins and needles and numbness in my left hand and foot; my feet feel like lead and my left foot feels as though it's immersed in cold water often.  My right side is occasionally effected too.  I have an almost constant tremor in my left index and little finger, and I get an internal vibration running right through my body.
I usually feel exhausted, weak and lightheaded, and sometimes quite nauseus.
I did see a neurologist in February, who carried out a neurological assessment, which I passed.  She said she didn't think it was MS, as I wouldn't have good and bad days if it was, just bad ones - I've since learned that this statement was not really correct.  I think I was a bit naive, as I don't know much about neurological conditions, and didn't mention the incident 17 years ago, or the fact that I'd woken with blurred vision a couple of times; I thought my current symptoms would have sufficed to have further testing and didn't want to seem overly paranoid - I really wish I had told her everything now.  My own fault, I guess.
I have another appointment with a doctor shortly, and am going to push for more testing, for MS and Lyme.
Any advice would be very much appreciated.  Thanks.

New Member

Date Joined May 2011
Total Posts : 14
   Posted 5/12/2011 8:06 AM (GMT -6)   
Hi again, 
just wondering if anyone has any opinions on this?  I forgot to add that I also get really short of breath - very much so today.  Maybe this is some kind of circulatory problem - heart disease does run in my family!  My cholestorol is 5.9(bit high), but I'm underweight, don't smoke, don't eat crap, but who knows?  My Mam died of heart attack and Dad of stroke - both very young, and brother had massive heart attack and survived thankfully.
Doctors think I'm just paranoid, and won't do further testing!!!
Just feeling a bit down and need a bit of support if that's ok.

Post Edited (native) : 5/12/2011 8:10:34 AM (GMT-6)

Forum Moderator

Date Joined Dec 2008
Total Posts : 15902
   Posted 5/12/2011 4:21 PM (GMT -6)   
native: I do not know what this coule be, it seems like it could be a lot of things. I too have something that the doctor seems to think is "in my head". I am extremely tired and short of breath but I don't have a lot of the other symptoms you mention. Why not start fresh with a new doctor and get another opinion? They should take your concerns into consideration even if they don't think it is the case. You have unexplainable symptoms, they should be taken seriously.

Have you seen a hematologist?
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New Member

Date Joined May 2011
Total Posts : 14
   Posted 5/13/2011 6:11 AM (GMT -6)   
Hi, thanks for your reply.  No, I haven't seen a haematologist - that may be a good idea.  I have a doctor's appointment next week and will mention this.    It's frustrating, isn't it, when you know you're not well, but the doctors seem to give up at each hurdle, and I have to go back to the doctors over and over retelling my symptoms.  I feel a bit like the ancient mariner at the wedding.
I hope the doctors take you more seriously too.  Take care.

Forum Moderator

Date Joined Mar 2009
Total Posts : 2155
   Posted 5/16/2011 6:47 AM (GMT -6)   
I have lyme and many many of the symptoms are very common with lyme and I in fact have had them. You need to get to an LLMD. Where are you located? It is important to be your own medical advocate. you know your body. Do not let ANYONE convince you there is nothing wrong. I listened to that BS for years and it cost me a lot of valuable time and suffering. Listen to yourself and keep searching. Do research online. Those with the disease with be your best help. Not much is known about lyme or MS for that matter so do not rely solely on medical professional who are not experts in those fields. Best to you.
Lyme, HME, HGE, bartonella. 4 years undiagnosed despite 10 drs.
Current meds: roxythyroxine, bactrim, doryx, amanatadine, neurontin, xanax, cymbalta Prior meds: amox, minocycline, tetracy, doxy. IV refused by ins. Supplements: potassium, boluke, alpha lipoic acid, AG immune, magnesium, milk thistle, garlic, grapefruit seed extract, resistant microbes, coq10, fish oil, baby aspirin
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