This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi, I wondered if someone could give me their experiences about this.

My husband was diagnosed in 1998 with PPMS after experiencing left foot drop, having an evoked potential test, and that eye condition where the eyes don't track together going from one side or the other (I can't remember the name).

My husbands symptoms have since progressed to having a stiff and weak left leg, and poor use of his left arm and hand. He has some dizzyness, fatigue and bladder hesitancy as well.

His MRI apparently he has a lot of small lesions throughout, but a neurologist (we've had a couple) has never correlated the location with symptoms. Nor do I know whether he has spinal lesions.

We were tested in Barrie and he was found to have reflux on the left side.

Can anyone speculate why my husband mainly has symptoms on the left? He has absolutely no motor or sensory issues with his right arm,ahnad, leg, or foot. He doesn't have any swelling or discolouration, so I thought it must not be May Turner (just going from what I read on here).

I'd be grateful if you could tell me your thoughts/experiences/doctor's comments! Thanks!

for at least 17 of the 20 yrs my left side arm, leg, hand and foot were pretty much normal while the right side deterioted to practically useless. the only thing that made the left side weaker was heat. but then about three yrs. ago i had terrible mental stress and the deteriotation started progressing in the left side. my feet are both very purple except when i lay down or move some or when i first get up. i am ppms started after a bad fall only one or two lesions. no neuro. ever answered or did anything for me either. let's hope ccsvi gives us answers and permanent help.

I was initially diagnosed with transverse myelitis as I only had spinal lesions, no brain lesions. My left side was most affected. I have finally been given an MS diagnosis with still no brain lesions. My right leg is now affected, but still much better than the left. My right arm and hand is still normal, thank God.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

Hello:
My husband was DX'd in 04 with PP. His left side has always been affected drop foot, burning and discoloured sole, spasms, 2 fingers tingling and left arm occasionaly. The right leg would give him problems like groin pull and he believes it was because it was used more to support his leftside.

His left juglar had two stentoses and one in his right. After Liberation, all of this improved dramaticaly. A month later, after going on a week-long motorcycle trip he began to decline and lost some of his gains (albeit not all his gains). Contacted Dr Simka and he told us that this is a phenomena that isn't understood yet. We were prepared not to expect any improvements for 3-6 mos from the beginning. Anyway in the past week he has been showing small improvements with his walking and for the first time in a very long time, able to cross one of his legs over the other knee...
Take care
Diana

I was diagnosed with PPMS in 2003, although that diagnosis has been called into question, because I have only significant one lesion at the very top of my spine (the cervicomedullary junction-I have another small lesion in the right periventricular region of my brain, but this has been deemed by all who have examined me to be completely insignificant.), and my spinal fluid has always been clear of any signs of inflammation, immune activity, or O-bands. My lesion has not changed in presentation since the day I was diagnosed; an MRI taken seven years ago looks exactly like an MRI taken today. My MS neuro says it's atypical PPMS, the National Institutes of Health say it's not MS, but can't pinpoint what else my disease might be.

Having said that, for approximately the first five and half years of my illness, my right side bore the full brunt of the disease. Both arm and leg slowly weakened, to the point that today they are for all intents and purposes useless. About 18 months ago, my left side started to feel the effects of the illness, and now is getting considerably weaker, less coordinated, and is displaying sensory issues (numbness and tingling).

I underwent an attempted liberation procedure in March, which found that I have a major blockage in my right internal jugular vein, which was unable to be opened via angioplasty. At first this blockage was believed to be a malformed valve, but now, after Doppler sonogram, it looks like it's a muscle bundle that is pinching the vein nearly closed. No consensus yet on how to fix this, it will either require a stent, or more likely, traditional surgery.

My venogram also revealed suspected issues with my azygos, but these also were unable to be addressed (the catheter couldn't reach the location of the problem).

_________________
Marc
www.wheelchairkamikaze.com

Marc, I also have no O- bands, but they found that I have a monoclonal band which is "suggestive of MS". My initial lesion still looks the same, also in the cervical area. The last MRI found a lesion in the thoracic area (I think that's what it is called?) but that was not imaged the first two times , so no way of knowing if it's new. Had to rule out Devic's, sarcoidosis, etc. I have been told I have a "unique presentation" which sounds a lot like "atypical MS". I am mercifully free of vision problems, brain fog, cognitive issues, etc. Of course there is still the whole unable to walk thing, but my scooters are a lifesaver.....

I am always eager to read about others with a similar presentation and find out what may or may not have helped them (LDN, CCSVI,etc).

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy