Could this be MS??? Scared and confused...

[MLM1978]

A brief history.  In April 2011 my vision started to go blurry in my left eye, I had sensitivity to light and pain.  I was diagnosed with uveitis/iritis and put on steroid drops for about two months.  I recently have had two episodes of urinary retention; both of which I ended up in the ER and was sent home with a catheter.  The ER doc asked if I had ever experienced numbness and I said yes.  He asked if I had been screen for MS since I was "at the age that people are commonly diagnosed" (I just turned 34).  The urinary retention happened in May and July of this year.  Since the urinary retention I have difficultly starting to urinate (it does not happen immediately).  I then started having daily numbness and tingly in my hands and feet which sometimes spread into my arm and leg.  It last consistently for about a month and a half.  My primary care doc also mentioned MS.  She did multiple rounds of blood work looking to eliminate other possibilities (Lupus and other autoimmune diseases that can show signs in blood tests).  My blood work was fine.  I was also feel extreme fatigue/exhaustion every day.  I recently had a consultation with a neurologist and he ordered an MRI of the brain and neck.  He said this could eliminate MS as a cause.  I just had the MRI's today (with and with out contrast).  The nurse just called and said the doctor said to tell me the MRI looked normal.  I don't know what this means.  Does it mean that everything was fine and there were no lesions?  Does that completely eliminate MS??  I also have Evoked Potential testing this week.  I have a follow up appointment with the Neurologist in a few weeks.  Does the Neurologist evaluate the MRI or does a radiologist?  I'm just afraid that I'm being written off.  I have had these unexplained medical issues that no one else I know has had.  After having a few doctors mention MS and in looking at it...it would make sense.  If anyone can help or offer any insight I would be so greatful.  Thank you.

[LilMinnie]

I accidentally found out that neuro two is treating one of our long time family friends who has MS. He is associated with a well known research hospital. I don't think he is specifically an MS specialist, yet he is very much respected and his patients love him. It is very reassuring to talk with people in the waiting room who have very positive things to say.

Yes, it is frustrating at times how much testing is involved and what all has to be checked and ruled out. I just want to find out what I have, whatever it is. This second neuro seems determined to help me figure it out. I am encouraged and if it takes a while to get it right then I'm okay. Now, if it gets into years instead of months I may not be so patient! ;-)

[MLM1978]

Hi Kyle,

Thank you again for the information and support!  It's so weird to have these strange medical issues pop up out of no where...like the inability to pee!  The 1st time it happened I probably waited longer than I should have before going to the ER.  I just kept drinking water thinking I must have been dehydrated or something.  When they did the bladder scan and saw how incredibly full I was they put the catheter in immediately.  

I really do appreciate the information and will post an update when I have one.    It would be so much easier if there were a blood test!  

Thanks again,

Michelle

[MLM1978]

Hi Minnie,

It sounds like you've had a bit of a frustrating time!  I hope that they are able to find answers for you soon!!  Is your 2nd Neurologist an MS Specialist?  Keep us posted on how you're doing as well!  Best of luck.  

Michelle

[LilMinnie]

Hi again! Well, things are moving at a slow pace, but they are moving. My first neurologist (who is an MS specialist) was quite dismissive. Without even examining me, he said that he doesn't believe I have MS, like it is something I thought I had or want to have! I only saw him because that's where I got referred. Believe me, I don't want anything, just to get back to normal :)

He said I need more sleep, to take a muscle relaxer at bedtime, and that I have carpal tunnel. He ordered an EMG, and then only ordered a brain MRI because of my double vision.

Much to his surprise, I do not have carpal tunnel, and there were abnormal needle readings that indicated more of a neurological issue. He was nicer the second visit but by then I had already found neurologist two. I didn't cut ties with the first one, just left things open.

Second neurologist is leaning toward MS but there is a lot yet to rule out. My thyroid is normal, I don't have diabetes, and my B12 is on the lower end of normal, so I have begun getting shots.

The second neuro recommended I see an Ophthalmologist, who is wonderful. I was there for four and a half hours. Findings are refractive diplopia and convergence insufficiency X (T). Convergence Insufficiency is common in children because their eyes are still developing. Adult onset may indicate a neurological problem. She prescribed glasses but listed MS and MG as differential diagnoses and wants more information from neuro two.

Also, neuro two wants me to have an LP, which I am scared to death of. Even if there are no O bands you can still have MS, yet a positive one would be one more piece of the puzzle. Lol, did I mention that this can be complicated?!

Thank you for the well wishes and good luck to you too in your quest for answers :)

[kwarendorf]

Michelle - What you will find is that every time a specialist, like a urologist, can't find anything wrong you have learned something. When the mechanical is in good working order, the neurological becomes more suspect :-)

There is nothing wrong with my urinary mechanics, nor is there anything wrong with my optics, yet I can't pee and I have double vision every morning :-) Go figure!

They don't like to think of it in these terms, but often MS is a diagnosis of exclusion. If you present with a comical clinical exam and have lesions and or o-bands, they then start to rule everything else out.

One day maybe they will identify a bio-marker for MS. The all they'll need is a simple blood test. Until then, hang in there and keep us posted.

Kyle

[MLM1978]

Hi Kyle,

Thank you so much for your comments.  I have my Evoked Potential tests on Friday.  I am going to request the MRI results and films.  The hospital that I'm currently getting testing at has a MS clinic as well but you can't just called a specific Neurologist and request to see them;  so I couldn't try to talk to the MS Specialist.  The other hospital has a clinic as well and it looks like their website will let you request 2nd opinions.  I will get my Evoked Potential tests done and also try to get copies of those results.  

The urologist I saw after the 1st episode of acute urinary retention didn't do any testing.  He did another bladder scan; told me that I had a little fluid in my bladder and told me to make an appointment if I had problems again.  After it happened for the 2nd time my primary care doc contacted the Urologist and he now wants me to get Urodynamic and a Cystoscopy done.  I wanted to get feedback from a Neurologist 1st and then schedule the urological testing.  

I'm sure I will  have many more questions.  Thank you for the support and encouragement.  I just want to get this all figured out!  I can see that this process may take a while.  I appreciate knowing that I have people like yourself who I can reach out to with questions.  

Thank you again.  

Michelle

[kwarendorf]

Hi MLM -Welcome to our little group. I'm sorry you needed to find us :-)

Urinary issues such as retention and difficulty starting can certainly be related to MS. I have both. Without the help of tamsulosin (Flomax) I would have great difficulty starting and would only empty 2/3 of my bladder. I two have seen a urologist, two in fact, and neither one could find anything physiologically wrong.

Symptoms that appear on one side at a time, rather than both, are also hallmarks of MS.

The diagnostic process can be long and frustrating. There are not always answers. It does sound like you are well on your way though.

If it were me I would skip the follow up visit with your current neurologist. I would go directly to the MS clinic at the other hospital. I would bring the complied results of all of the tests you've had so far.

Keep us posted on your journey and ask us lots of questions. We've all been where you are :-)

Kyle

[MLM1978]

Hi Tom,

Thank you so much for your response.  It is nice to know there is a community of people here to offer support and important information.  I will request my MRI report and scans.  I will probably wait to find a 2nd opinion until after I have my follow up with my neurologist.  Depending upon what happens I may get a 2nd opinion from a different hospital with an MS clinic.  The hospital I'm currently going to has one but my neurologist is a general neuro, and does not specialize in MS.  

[MLM1978]

Hi Minnie,

Thank you so much for your response.  I appreciate your words of encouragement.  How is your process going?  You mentioned you're just beginning the diagnostic process.  

I will try to request the copies of my MRI reports and scans.  I have heard that it is best to seek out an MS Specialist.  

I know my body and just have a strong sense that something is wrong.  With the acute urinary retention, numbness/tingling and even the uveitis/iritis and the fatigue/exhaustion as well.  

I hope that you're finding answers for your medical problems as well!!

[MLM1978]

Hi.  Thank you for your response.  My numbness was isolated to my left side.  It was numbness and tingly in my hand and foot that lasted for approximately a month and a half.  I had three doctors talk about MS (my primary care doctor, an ER doctor when I was in the ER with acute urinary rentention and the neurologist), that is what prompted my research.  

I have Evoked Potential testing scheduled for this week but they are not doing the visual one.  They're doing the Somatosensory kind to check two different nerve pathways (going down to my pelvic region for the bladder and my hands and feet on my left side).  The neurologist wanted to do a spinal MRI but decided to start with the brain and neck and do the Evoked Potential testing.  He indicated that he might still order the spinal MRI.  I have a follow up with him in a few weeks.  

From what I've read numbness/tingling and bladder issues are rather common with MS.  I not only had the acute urinary retention I also have difficulty starting a stream when I do go but also feel the need to go often.  I was not diagnosed with bladder spasm or paralysis.  Regarding my Uveitis/Iritis, I merely mentioned the issue since it is part of several strange medical issues that have occurred in my life during the last year and a half.  I did a lot of research on uveitis/iritis when I was diagnosed since I had never heard of it before.  The article which I was referencing which mentioned MS is:  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002000/.  I found that article when I started reseaching MS so I thought it was worthy of mentioning.  

I do understand that there are multiple conditions that mimic MS.  I'm just trying to figure out what is going on with my health.  I have had extensive blood work done to look at alternative reasons for all of this but the tests were fine.  I also had a pelvic ultrasound to make sure there was not anything that would cause the bladder retention.  I had two bladder scans done.  I've seen a Urologist.  

Please let me know if any of this makes sense.  I'm just a little overwhelmed right now.  I appreciate your help greatly!!!

[supermum_ms]

Hi and welcome to our little community,

What i would advice at this stage is patients, yes i know i know, thats really hard to do when your talking about your health but its important to wait until you've had all the tests and the results are in. 3 other tests that come to mind and are inter related to what you've experienced and they are....

1) Visual Evoked Potential (VEP or EVP) to check for visual signs, btw uveitis/iritis is unrelated to MS and can happen with out a person having a chronic autoimmune condition. see http://www.aao.org/theeyeshaveit/red-eye/anterior-uveitis.cfm

2) EMG to check for nerve signs EMG (electromyogram) can detect abnormal muscle electrical activity in conditions such as neuropathy, carpal tunnel syndrome, pinched nerves, herniated discs etc

3) A spinal MRI, looking for any structural abnormalities, cns lesions etc

I would like to take a step back for a moment, and look at what you have been dx with, both your visual and bladder issues could be seperate issues unrelated to anything in particular, both are not typically common in MS. Bladder spasm/paralysis is not as common as bladder incontinence and when bladder issues do happen in a pwMS it is typically connected to spinal lesions. Visual sx's although common in MS, uvietis is not related, visual sx's commonly connected to MS are Nystagmus, Diplopia and Optic Neuritis.

Also not typically seen in MS is "I then started having daily numbness and tingly in my hands and feet which sometimes spread into my arm and leg" sx's that spread, move around, in all peripherals and happening in both sides of the body are not typical of MS, there are other conditions where this is a more typical sx pattern, and considering MS has numerous mimics, there really are alternative possibilities that need to be looked at too.

Try to be patient and wait until you've gone through all the tests, it may not be MS or even a chronic condition, hopefully you'll get some results soon and they will provide an idea of what it is you are dealing with.

Hugs...........JJ      

[tomas2729]

Hello and welcome.

When MS first showed up on my radar, I was in an Emergency Room. The radiologist only found one lesion in my brain and he thought it was much smaller than it turned out to be. When I went to see a neurologist, he found a total of four. In my case, both the radiologist and the neurologist read my results.....

In light of this I would also suggest that you get your hands on your scan results and see about having somone else read them as well.

If you are concerned about MS there is always the possibility of asking for a Lumbar Puncture (another way to test for MS)

I am sorry to hear about the symptoms that you are experiencing. When things go wrong with our bodies it is kind of freaky for sure. You are so not alone in all of this.... There are many really good people here who know a lot about these kinds of things so stick around.

Hang in there and let us know what you find out.

Best,

Tom

[LilMinnie]

Hi and welcome! I am new to all of this too. I have just begun the diagnostic process myself.

First, did you request a copy of your MRI scan and written report? Most facilities will provide this free of additional cost if you ask. When I first joined this site, the great people here suggested I get copies of all reports and keep them together in a file. I also scan them and upload them to a cloud site called Box. You can also use Google Cloud or if you're an Apple person, the iCloud. I have hard copies and copies saved on my flash drive.

As I said, I am new and still learning, but my first neurologist said my brain MRI was normal, yet the Radiologist identified one lesion and my second neurologist found an additional one. I would never have known this had I not received my own copies of the report.

The thing about MS is that there is specific criteria, called the MacDonald Criteria, that must be met before a diagnosis can be made. Some people can be diagnosed immediately, others have to wait until there is dissemination in time and space between episodes or events. It can get involved and complicated. There are also mimics that have to be ruled out.

There are people here who know a lot more than I who will hopefully be able to offer more and better advice.

Best of luck,
Minnie :)