recently diagnosed with PPMS

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recently diagnosed with PPMS

Postby foreignlesion » Mon Jul 13, 2009 4:08 pm

Hi all!

I am a 33 year old man who was diagnosed with PPMS in March after finally finding a GP that would send me to a neuro. Bowel and bladder symptoms began 4 years ago after an anxiety attack, GP diagnosed chronic stress. Fatigue progressed, bowels stabilized, urinary issues worsened, sexual dysfunction crept in. Visited several doctors over the past two years and kept getting the same response. Legs went numb in January and quick progression has ensued. Visited three doctors in February and only one gave me a neuro referral. It took the neuro 15 mins to determine I had MS, confirmed by MRI and spinal tap. Since then, everything I've learned about MS has been on my own. Haven't heard from my neuro (I've called half a dozen times w/o response) and my GP's great at giving me referrals, but doesn't have much knowledge of MS. The MS society of Canada is a great resource for general information, but is not much help for personal care. I am looking forward to an upcoming appointment at the MS clinic as my research has resulted in many questions. I am glad to have found this site as it also appears to be a valuable resource. I didn't know about LDN until I arrived here and it has definately peaked my interest.
Where is fancy bred? In the heart or in the head?
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Postby Lyon » Mon Jul 13, 2009 4:42 pm

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Last edited by Lyon on Sat Nov 26, 2011 11:29 am, edited 1 time in total.
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Postby peekaboo » Mon Jul 13, 2009 7:34 pm

f.lesion -

howdy...I am a fellow PPMS/r there is a gold mine of info here at TIMS. Check out all the forums that are listed here as well as my recommendation of CCSVI. Every symptom you have listed is on the list. you appear to be resourceful on your own...take advantage of TIMS we here ar every willing to answer questions as well as listen to your posts.

I wish you welcome to this site... It is important that you become your own self advocate w/ MS...
Foward Ho :!:
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Re: recently diagnosed with PPMS

Postby twistymirrors » Sun Jan 10, 2010 5:02 pm

Your neurologist that you didnt hear from and couldnt get a hold of-which neuro is this??? Does it happen to be Dr Rehman???
He wont see me anymore and his secretary is horrible at getting things done and giving him messages.
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Postby foreignlesion » Mon Jan 11, 2010 1:30 pm

Yes it was. I phoned once a week for about 5 weeks the month following my Spinal Tap (April 1st), which I've since learned was incomplete and inconclusive. I still haven't heard from Dr. Rehman, but I have since visited the MS clinic in Saskatoon, and have started treatment for some of my symptoms.
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Postby twistymirrors » Mon Jan 11, 2010 3:02 pm

I called Dr Rehman's office last week to make a new appointment for new headache meds...his secretary said she had to talk to him first before she could make another follow up appointment for me and then she never called me back.
He sent me for a spinal tap, and all he tested for was my pressure cuz at the time he thought i had intracranial hypertension...didnt bother to test anything else...i laid thru that spinal tap for a bloody hour and had to get a blood patch 4 days later...and he didn't even test for ms, lupus or anything else...I was very unhappy about this because now I will have to go thru another spinal tap...
his secretary is horrible...i called one day requesting that she fax reports and spinal tap results to me she said she would...two days later i still didnt have it so called back and she got pissed off and said she would send it...a few days later we went into the office to ask for it and she said she sent it to my dr and i could get it from them...go to that dr and she never sent it to them either.
She was suppose to book my spinal tap urgently...3 weeks later i get a call from her about booking an mri...which i had just had...and told her he wanted me to have a spinal tap not an mri...
Dr rehman told me he didnt think my problems were neurological...when we told him of my speech problems he told us that whose to say that its not normal?? COME ON! its not normal to stutter on words or say things wrong when a few months previously i was fine.
Another thing is after i had my first ct scan it was recommended that i have an mri...he said I didnt need one...so i had a few things undiagnosed for 2 years because he didnt think i needed an mri...could have figured this all out by now if it wasn't for him.
I don't think he is a good neuro at all...he sent me to Dr Kumar for a second opinion..when we went and saw him he told us he couldnt help us because im not a candidate for surgery...that Dr Rehman should have sent me to another neurologist not a neurosurgeon...
lol here i am just ranting...he just pisses me off and I cant stand his secretary...I doubt it was dr rehman who wasnt calling you back...he probably just wasnt getting your messages.
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