Excited about New Neuro!

[Ruffles]

I've been struggling for the past couple of years to get a diagnosis for numbness/tingling, UTI like symptoms, and some very mild vision problems. My current neuro only gave me the diagnosis of vitamin b deficiency and started me on injectable vitamin b. Numbness improved and then got worse and spread.

At the beginning of this year I had an appointment with my neuro and she sent me for a bunch of blood tests all of which were normal. Vitamin B has come way up and is no longer on the lower side of normal but sitting right in the middle of normal range. During my follow up with the NP I was completely thrown for a loop, nothing the neuro talked about occurred and I pretty much felt like I was put on the side burner with a come back in 6 months label. After trying to contact the neuro was told my official diagnosis is demyelinating disease of CNS, was never told this by neuro. No explaination as to how she came to that conclusion etc.

So I decided to schedule an appointment with a different neuro. After receiving my medical records Im so happy I decided to make the switch. I thought my neuro exam was normal, its not I have an unsustained nystagmus mentioned in every exam. Only one mention of having trouble focusing my eyes, Ive mentioned it at more than one appointment, no mention of any UTI like symptoms that Ive told them about.

I contacted the MS Society and they got me in contact with UT Southwestern, they were quick to respond and very helpful with scheduling. I will be seeing the head of their MS department in August and hopefully get some answers. They have a whole team of doctors so hopefully I can see other doctors for my eyes and urinary issues as well, if I can coordinate these appointments I can get all of it organized without taking a lot of time off work! Anyways I just wanted to give an update because my fiance and parents arent as excited as me about this new neuro and I figured people in here would be.

[JerryD]

I am glad to see that you are going to consult with a UT doctor. You will probably get a lot of tests done and that will help the doctor make a definitive diagnosis. Low vitamin B and low vitamin D are almost always present when one has a neurologic disease. I hope that your doc discovers the cause of your ailments. Good luck

[SNOOPY]

Hi Ruffles,

Glad to hear your seeing a new Neurologist. A new set of eyes certainly can't hurt.

I don't remember, did you see an Optometrist or Ophthalmologist about your vision problem or consult with a Urologist for the urinary problem?

What I remember is your MRIs are clear, I think Even though MRIs may be clear that doesn't rule out MS, just as having lesions on MRI does not automatically mean MS. I was diagnosed a clear MRI. There is a very small percentage (5%) of those diagnosed with MS that do not initially present with lesions.

Hoping Multiple Sclerosis is not the diagnosis you receive. Take care

[Ruffles]

Hi Ruffles,

Glad to hear your seeing a new Neurologist. A new set of eyes certainly can't hurt.

I don't remember, did you see an Optometrist or Ophthalmologist about your vision problem or consult with a Urologist for the urinary problem?

What I remember is your MRIs are clear, I think Even though MRIs may be clear that doesn't rule out MS, just as having lesions on MRI does not automatically mean MS. I was diagnosed a clear MRI. There is a very small percentage (5%) of those diagnosed with MS that do not initially present with lesions.

Hoping Multiple Sclerosis is not the diagnosis you receive. Take care

Sorry I havent responded until now I have been getting my rear end handed to me at work we have been so busy.

I have not seen other specialists for the urinary or vision problems yet. The MS center I will be going to pairs you with other specialists based on your symptoms and then all the doctors work together. So I should be getting paired with an opthomologist and a urinary specialist after my initial appointment with the MS specialist.

My mris have been normal so far so Im continuing to be hopeful (while still preparing myself for a diagnosis). I feel good about what Ive read about this new doctor and the staff is way more on top of things than the previous doctors staff.

[DougW]

Wishing you the best of luck on your new Neurologist visit! Hopefully they pinpoint the problem, that it is not MS, and that they can give you some relief (and piece of mind).

Stay safe & well.

[Ruffles]

Update

Hi all. So I just wanted to give you an update on whats happened since I posted this. I went to see my neurologist and was happy with the appointment. He ordered more bloodwork and an mri w/ and w/o contrast of my brain. The bloodwork came back all normal. My vitamin b levels are in the high range of normal and he also tested something that would indicate my vitamin b levels being a problem, I forget what its called but pretty much if it was high then it might indicate my vitamin b levels are too low for me. That was normal. MRI was normal.

As I looked through my previous records I noticed that one MRI had mentioned a hyperintensity that they thought may be because of my age. That was not present in this MRI and the dr looked at the old mri and said it did not look like a MS lesion. The doctor agreed with me that with my vitamin b levels never being out of the normal range and with the levels now being at a good level they dont think that is the problem.

I did see a urologist who ultrasounded my bladder. Said everything looked normal and i only retained 35cc of urine which is well within normal. The next time i have urinary issues Ill be going in for a urodynamics.

I was unable to get into an opthamologist prior to my follow up but they did an oct scan and everything was normal. My nystagmus that was noticed at the other neuro was not present at this last exam. Although I have had some double vision right after waking up, but that could be due to something entirely different.

The assistant to the doctor recommended I get a sleep study to see if I have sleep apnea and that contributed to my severe fatigue when this all started. That recommendation was made when I asked if there was anything else they recommended before I had to switch insurance.

The plan is to order another mri in a year and follow up with an appointment after that. So still in limbo, but still holding onto hope that its not MS. I had a long discussion with the assistant at the mri follow up appointment. She said we may never know whats causing the issue and that there is a chance it is MS and there are no lesions on the MRI yet.

I feel more confident with the plan with this neuro even though its similar to the other neuro as they dont keep putting things back on my vitamin b levels. Heres to hoping next years MRIs are as clean as this years!

[SNOOPY]

Hi Ruffles! Thanks for updating!

I will continue to hope MS is not the cause for your symptoms. I think it's great you have a Neurologist that is following you with follow up MRIs and ruling out other possibilities. Will you be getting the sleep study soon? Wishing you all the best!

[Ruffles]

Hi Ruffles! Thanks for updating!

I will continue to hope MS is not the cause for your symptoms. I think it's great you have a Neurologist that is following you with follow up MRIs and ruling out other possibilities. Will you be getting the sleep study soon? Wishing you all the best!

Yes, as long as I can get in by the end of the year. Im getting booted from my insurance the end of this year and unfortunately the insurance options for next year are not so great. So Ill be squeezing everything in at the end of this year like dentist etc including the sleep study if at all possible.

I really liked this neuro, while they dont have any answers right now they are far more understanding of the frustration Im experiencing when it comes to getting a diagnosis and were also very understanding that I was trying to get all testing out of the way that I could before I switch insurance.

They also recommended increasing my vitamin D, while its certainly not low they like it to be in the high range of normal for any patients that they are considering for MS. In addition they recommended I try a gluten and dairy free diet... which Ill admit Im not very excited to start, Ive put that off until after finals when I have more time to research alternatives for dairy and gluten, because thats literally whats in all my favorite foods. So Im sure Ill be lurking around the recipe forum. It also makes me feel better that while they dont have answers theyve at least given me some things I can try to see if they help rather than telling me Ill probably develop MS later and its just a waiting game with no real diagnostic evidence of MS.

You have been very helpful in this whole process and I really appreciate all the advice on how to proceed with my appointments and health care. Thank you!