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Anonymous
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Hello everyone,

I'm hoping for advice and experiences from those most knowledgable about the disease - those living and breathing it everyday. A little background - I'm 34 years old and about 10 years ago suddenly started experiencing urinary urgency/frequency. I endured about every treatment possible and none of them resolved the symptoms, my urologist and I left it at neither of thought pursuing a bladder augmentation was a good idea given my age and associated risks. A cause for the bladder dysfuntion was never identified, however. At one time, my urologist had sent me to neurology to be evaluated - MRIs of the brain and spinal cord were normal. Additionally, I was referred to a neuromuscular specialist who noted an extreme heart rate response on a tilt table test, but no other signs of autonomic dysfunction. After a while, I just got tired of doctors and tests and decided it was easier to live with the symptoms and have been doing so for the past 5-6 years. However, earlier this year I started having some imbalance/dizzy sensations - sort of that 'I'm on a boat' rocking sensation. Additionally, I'd occasionally have what I call my 'bouncing foot'. I somehow found myself back in a neurologists office who was able to get a few beats of clonus and some mild spasticity in my left leg so back into the MRI machine I went along with blood work to assess for inflammatory conditions. The MRI came back normal again and my blood work was normal, except for a 1:360 titer on ANA and a 1.3 OD on the EIA ANA test (not sure what the difference is). Seeing a rheumatologist, he basically said we have to wait out a high ANA - without any specific antibodies coming back positive he couldn't help - so I went back to living with the symptoms. Fast forward to today, I'm finding a deep aching/throbbing pain in both of my legs that gets worse with activity - anywhere from vigorous exercise to cleaning my house - and will hurt so bad it's hard to fall asleep unless I curl up into a tight ball. I saw a new GP who based on my assessment took a similar course of testing as I've previously endured - blood work to re-check my autoimmune antibodies and referral to a neuromuscular specialist. My ANA antibodies were now a 1.6 OD on the EIA test but only a 1:80 titer - why one went up and the other down I have no idea - no one can tell me why it's getting measured different ways. All other antibodies negative still. Neuromuscular guy noted same few beats of clonus and left leg spasticity and dismissed me (I mean literally walked out of the exam room and never came back). 

I'm here because the one thing my GP had said before I left is that even though I've had two sets of normal MRIs doesn't mean MS can be ruled out and I find that very frustrating. I'm having a hard time believing it could still be MS, but because my mom has the disease and I'm prime age, it's all any doctor talks about. I want to know from everyone's practical experience, does this even sound like it fits or is even still a diagnosis on the table given the timeline and clean MRIs? I just don't want to waste my time in the wrong places anymore or end up in that MRI tube again because there are few things I hate more :)

Thank you all in advance! 

Hi, mmm....a difficult one. Are you in USA? I ask as some of your terminology leans that way to me.I dont know what ANA blood work means.

I have had 5 MRIs and only the last in depth one found any lesions. I often read on here, about folk with no lesions seen, but they do have MS diagnosed eventually.

MS isnt strictly genetic, although it can be familial.

It took years to get my diagnosis, so hang in there chick.

Boudsxx

Anonymous

Do you mind sharing - over many years did it take for your first lesion to appear on the MRI?

Hi, mine`s quite an unusual story. If you have the time and inclination, I`ll tell you about it.........

1998 saw my 1st neuro. I was experiencing walking problems....stumbling, dragging my left leg, falling over.

Had 4 mris, 2 lps, 2 emg tests and a vep, plus loads of blood tests.

Nothing proved MS until last year......lesions were found on my cervical and thoracic spinal cord. I was given a diagnosis at last, of Spinal PPMS.

My neuro said I was only the 2nd person he has seen with this type of MS, as it is quite rare. So it has taken 22 years!

Hope I havent frightened you off!

Boudsx

Anonymous

No, you have certainly not frightened me off. I'm sort of in this period where I can tell my body is off, but my symptoms aren't visible - except for the couple beats of clonus. But doctors can't see my muscle pain. I work out as much as I can so I'm fairly strong, but not nearly as strong as I used to be. But again, doctors can't see that. They rely on my judgment for so much and then when an MRI comes back clean or any other test, they throw their hands up in the air and say there mustn't be anything there. I'm tired and frustrated and starting to feel like maybe I'm just imagining everything. Therefore, I can either quit and just let things evolve or keep pushing for answers - so I'm trying to understand other people's journeys and how long they took with clean MRIs to figure out the likelihood of MS diagnosis still being on the table before I push the doctors more and look like a real hypochondriac :/

Hi again. I doubt you are a hypochondriac....I do think it is worth persisting.

Is there a specialist neuro in MS you could see?

I went to a specialist hospital in the end...one who had much more expertise and funds available to dig deeper than most. I wish everyone who is in your position, could see my MR Marvellous!

Boudsx