Trouble getting a DX

[mm247]

I have slowly been developing pain throughout lower extremities, developed neurogenic bladder, visual problems (blurry vision and right visual blurriness when tired) Trouble with stairs and rising from chair.
All other autoimmune disorders have been ruled out. My MRI has white matter lesions but not near the ventricles which would be atypical. Spinal MRI clean. No O bands on LP. Had 13 Mononuclear cells normal range 0-5
I have had 4 opinions all say "likely ms" everyone want to wait 3 months before starting tx. Is this standard protocol?
My pain is being managed now but I do not want permanent neurological damage esp with the bladder. Has anyone had this experience? What have you done?
Any insight would be great.

[SNOOPY]

Hi mm247,

I have had 4 opinions all say "likely ms" everyone want to wait 3 months before starting tx

What treatment are you talking about? Steroids? Disease Modifying Therapies or symptom management medications?

I do not want permanent neurological damage esp with the bladder

The damage is not to the bladder it's self but to the Central Nervous System(CNS). Multiple Sclerosis damages the protective coating (Myelin) surrounding the nerves.

The damage has already been done

The easiest way I know of explaining MS:

If you have an electrical cord that is frayed then you have a short in the wiring. The cord will sometimes work and sometimes it won't. Once you place electrical tape around the frayed part the electrical once again works fine.

The Myelin Sheath protects out wiring (nerves), MS damages the Myelin Sheath creating a 'short' in our wiring. At this time there is no "electrical tape" that can permanently fix our wiring.

MS causes a misfiring of message signals hence the symptoms and difficulties we experience.

Your bladder problems may resolve over time, come and go or be permanent.

Best wishes

[mm247]

I am on symptom mgmt for pain and muscle relaxant. I had in mind DMT or Steroids.
I understand the bladder itself is not damaged but the signal to it is impaired, I do not want that to be permanent!

Did anyone have to wait a period of time or have "atypical" lesions?
Anyone recommend a Detroit area Doc?

[Kimba22]

I am on symptom mgmt for pain and muscle relaxant. I had in mind DMT or Steroids.
I understand the bladder itself is not damaged but the signal to it is impaired, I do not want that to be permanent!

Did anyone have to wait a period of time or have "atypical" lesions?
Anyone recommend a Detroit area Doc?

Hi mm247,

Waiting until there is more "evidence" that you have MS is pretty much standard protocol. Steroids and DMTs do not "fix" anything. Steroids only calm down inflammation in an effort to shorten a relapse and the goal of DMTs is to reduce the number of future relapses and hopefully, delay progression. Your doctors are reluctant to put you on a DMT because they do not want to put you on a medication you may not really need.

Like SNOOPY mentioned, if you have MS, the damage has already been done. There are certain criteria that you should fulfill before most neurologists will diagnose you with MS. This is called the McDonald Criteria. http://www.nationalmssociety.org/Nat...osis-of-MS.pdf

There are 3 MS Clinics in the Detroit Metropolitan Area. Here is that information: http://www.nationalmssociety.org/Tre...=100&zip=48201

It's so hard to be in limbo. I hope you find out the cause of your symptoms, soon (and it's something fixable, not MS). Please keep us posted.

Best of luck to you ,

[Mable]

If I was in Detroit, I'd try the center at Wayne State. Omar Kahn, the site director, has an excellent reputation. They do a lot of clinical trials there and should really know their stuff.

[aspen]

In limbo with you ...

Nothing of any great value to add to what's already been said ... Just you're not alone, don't let it drive you crazy, and I found it helpful to see a counsellor about 9 months into my limbo journey. I wish I had started sooner.

I have bladder issues but so far they come, stay for months, then disappear. Don't let your PCP/gp paint you with a "everything is ms" paintbrush -- I was misdiagnosed for ages for something unrelated because my symptoms were ms-like.

Because of my atypical lesions, I've seen a whole pile of specialists over the last year. -- most symptoms still have no explanation. I see my neuro next in December. I'm not holding my breath lol.

Although the process is frustrating, and I REALLY hope you have answers sooner than later, one wise friend here at MSWworld told me I would become more patient. It is true. The frustration is still here, but it does become more background noise (between flares anyway).

One more thing -- treat symptoms as you have them. Your PCP will refer you. Gait or weakness? See a PT. assume its not ms until it really is, so other mimics aren't missed. Weakness might appear permanent, when in fact, once the flare is over, you are weak because of disuse.

Be well as you navigate this, and keep us posted, okay?

[ejonesbowlie]

I agree with what others have said in that a good neuro is not going to rush to make a diagnosis of MS. They do follow the McDonald criteria. My neuro, who is an MS specialist, was hesitant to officially diagnose me without doing his own thorough MRI (my first was not done correctly)....even though I had very visible symptoms...foot drop, weakness, spasticity...and also had a positive lumbar puncture...elevate IgG index and 9 oligoclonal bands. They ultimately want to be sure they are treating the right thing and this is why the won't start any MS specific treatments until they are certain. As Snoopy already said, the damage to the bladder is already done, however it can be treated as a symptom with medication.

If you haven't seen one already, I would recommend seeing an MS specialist if you are able to do so. They have the expertise and likely have seen many atypical presentations.

I know that it is no fun to have all of these symptoms without an answer, however I truly pray that you do not have MS and as Kimba22 indicated, something "fixable"

[niffie116]

Same limbo

I was actually told I has MS..however..My last MS/Neuro visit couple days ago, raised some questions with me. In my thoracic MRI, I have 2 discs that have no fluid in them anymore. I was told that that is the cause of my numbness/tingling in my legs and feet. Also the pain that I get in my legs and lower back (that pain brings me to my knees at times). The 15-25 white spots lesions in my brain are "mostly" from migraines that I get. So I asked him, flat out so after 2 MRI's on my brain, 1 MRI on my cervical spine (2 disks are pushing into spinal cord) has 2 white lash marks also, MRI thoracic, spinal tap, umpteen vials of blood work (over $5000), imbalance, dizziness, blurred vision in right eye, with pain behind the eye, face tingling/numbness, heat intolerance in my back, cognitive issues with memory and speaking, EXTREME fatigue for 3 years now... you mean to tell me this is from my back? I was told to come back in 9 months. I am very confused. I was given baclofen for nerve pain in legs though. He said we will wait to see in 9 months. SSOOO confused.

[mm247]

You guys rock

Okay made my appointment. It will be opinion number 4 or 5
The rest of my labs came back from the neuro I really like, everything else has been ruled out. She is pretty cool and has MS herself, but with something this serious I am going to def get Dr. Kahn's opinion
But until then…I am having a horrible time starting flow for urination. I work in healthcare, I almost had a coworker straight cath me today! I just can't believe at a young age this is all going on. I feel like by the day I lose a little bit of function or control and it makes me lose hope

[SNOOPY]

I just can't believe at a young age this is all going on.

Unfortunately, MS doesn't care how young or old you are There have been reported cases as young as 18 months and there are Pediatric MS Centers

There are those on MSWorld who started out with MS in childhood I had symptoms as a child and was diagnosed at the age of 24.

I am having a horrible time starting flow for urination

You should see a Urologist for this.

[mm247]

Square one?

The specialist (opinion 2) just said I should be going to pain clinic. I won't go until a diagnosis is set. Otherwise we are masking symptoms of the unknown.
My regular Neuro has me on IV steroids- last day tomorrow. How long did it take you guys to get any relief from them?
I also have urology appointment tomorrow.
Also, has anyone had no O bands in LP but high mononuclear cells?

[aspen]

I was of the same mindset re: pain medications and masking of symptoms. However, in particular if pain is messing with your sleep, sometimes you just have to give in. Lack of sleep makes EVERYTHING worse ... symptoms, outlook, brain fog, etc.

I have been known to start tapering off a medication prior to a neuro appointment .

I take Lyrica only at night to minimize shooting pain in one leg, and fasciculations everywhere. It keeps me functioning as I wade through limbo.

Keep us posted how your appointments go -- I see my urologist next week!

[mm247]

IV TX finished and urologist appt

Finished the IV steroids today, uneventful-feeling no different.

Urologist- Pee in cup, followed up by bladder scan. His explanation was my nerves are not connecting to my bladder the right way therefore my bladder is not emptying. I only voided 60ml with 300ml left in the bladder. Have to start self cathing everyday 4x a day after i try to go first.

New order for a kidney ultrasound.

To be honest, I am sick of being poked and prodded. I wish the doctor's could find a cause for this. My doctor's order's just say Demylenating disease not otherwise specified.

Just lost

[aspen]

I hear you, mm. Self cathing is WAY easier than it sounds .

I was retaining 500 ml during my last round of trouble, and ended up with an indwelling cath for two weeks. Once things resolved ... I'm fine. Well, not fine -- better. At least I'm not retaining at this point! But I still am buying Tena products, despite a small surgery that my urologist felt might help in the area of incontinence. Sigh.

Did he mention doing a cystosccopy or urodynamic testing? I'm still waiting for my results. I've also had two ultrasounds, a catscan and now have to have an MRI ... I hear you in the "Oh so tired of it all."

Keep us posted, okay? {{{hugs}}}

[mm247]

I feel like the IVs are working

I was able to do a lap at the mall today, with some retail therapy. It has been months since this has been something I have enjoyed
I can over the cathing part if I can find where to get the prelubes. And maybe get over the discomfort! I am measuring how much I am voiding through the cath and they gave me a men's urinal to do this with…so awkward!