Frustrated

[Ruffles]

First off I really appreciate anyone who reads through all of this. This is mostly a vent/what do I sort of post. I joined the forum about 6 months ago now. I posted about my symptoms and some issues I have been having trying to figure out what is going on. I can't include links yet since I haven't posted enough, but if you go to my profile you can see my other post. The shortened version is I have been dealing with numbness/tingling for quite some time now. Never really had any pain issues and unfortunately it took me awhile to actually go to a neurologist because I didn't realize that my symptoms could be a sign of something more serious. I've been on vitamin b injections with improvement to my energy, but not my numbness/tingling. When I posted in June Snoopy posted a helpful link about the different things that the numbness could mean and it put my mind at ease and I continued my vitamin b injections.

I have recently though been getting concerned about some things and its really starting to bother me. I am at a point in my life where I have gone back to school to start a pre-vet course and then go onto vet school to practice equine medicine. Naturally working around such large animals I need to make sure that I don't have any weakness, dizziness, etc. So I've minored in accounting with the idea that if I happen to have some sort of neurological disease I can help run a vet clinic and do the books.

Recently I've been having some different stuff that has bothered me. I've always been prone to what I have always thought is UTIs but there have been a few days (they have been seperate occurances) where I have had to rush to the restroom for a day or two in a row like I have a UTI, but then it goes away. I've noticed occasionally that my hands shake, but I've attributed that to nerve damage from lack of vitamin B. I've also noticed that I tend to forget things now, I've been having to double check with the place I board my horses to make sure that I have actually given them a check and that I'm not just imagining it.

I'll forget what time I'm supposed to meet my boss for work ten minutes after he tells me (I work at a vet clinic as a tech so it is always variable since we do mostly farm calls). I'll forget simple things that I was going to do at work or I'll forget for a minute what the name of a joint is or even what joints we xray for a standard pre purchase exam (these aren't hard). This I have attributed to working and going to school full time. Recently though I have gotten extremely dizzy and had no/blurry vision in one eye. It hasn't lasted a long time and has only happened twice, but my problem is its happened two to three years ago a few times and its really starting to scare me.

I've gone to the Dr and had MRIs and they have all been fine. The list Snoopy gave me half of them I know I don't have, such as hypothyroidism, HIV, diabetes, etc as I've been tested for these things either during normal testing at a dr or when I first presented with my numbness issues.

I'm starting to think that I need to go back to the neurologist, but honestly a part of me doesn't want to go. I want to just keep taking my vitamin B and having everything be fine. Because I don't want to have MS, I don't want to feel like I need to major in accounting because I might end up having neurologic symptoms in 10 years and won't be able to work on horses. I'm also on a budget and I don't want to go back just to be told we're going to do another MRI and waste another $3,000. So I guess now that I am done venting here is a list of the stuff off of the list that Snoopy put on the last post along with what I know for sure I don't have:

Diabetes-pretty sure I've had my blood sugar levels tested before during my original GP visit for the numbness

Thyroid-I believe either the GP or the neurologist tested me for this

Alcoholism-I'm not an alcoholic

Malnutrition-The only vitamins I tested low for were vitamins b and d which has now been corrected. I've had blood screenings when I have given blood and protein, etc have all been normal

Vitamin B12 deficiency-We've been treating this and it hasn't been improving anything. How long until I should expect to see complete resolution of symptoms or even improvement?

Trauma-I wasn't able to attribute the numbness to any trauma and nothing like an injury showed up on the MRIs except for the herniated disk that occured after the numbness started

Inflammation-We've tried to rule that out with anti-inflammatories, NSAIDS don't seem to work, the strong combo of NSAIDS, muscle relaxers, and immuno suppresants was the only thing that made a difference and honestly I was pretty out of it the whole time

Connective tissue-We have not ruled out arthritis, lupus, etc. Should this be something I should talk to my Dr about?

Toxins-Again we haven't ruled this out, is this something my Dr tests for?

Infections-I've been tested for HIV with my routine STD testing and I'm negative for that, I have not been tested for leprosy or lymes disease. I have never had a rash, would that rule those out?

Any help is appreciated and if you have gotten this far thank you!

[KatW]

I think checking for other autoimmune disorders would be beneficial. Usually, it just requires a blood test to rule out RA and lupus. I've had dizziness with my MS and also when my blood pressure was high or low. Migraines can also cause dizziness without the headache. These conditions were ruled out before I was diagnosed with MS. Hope you get some answers soon.

[SNOOPY]

Hi Ruffles,

Sometimes we end up playing a waiting game for testing/retesting to show something which will result in answers/diagnosis

Do you deal with stress to the point of anxiousness? I ask because I have had my fair share of dealing with anxiety and being treated for it and I know what it can do to a person physically and emotionally.

If you do then you might talk to your Dr. about treatment. If you don't then never mind .

Some medications can cause Neurological symptoms. If you take any medications you may want to check listed side effects. If you take medications and the listed side effects match with any of your symptoms you may want to talk to your prescribing Dr.

Medline is a good place to start for medication side effects:
http://www.nlm.nih.gov/medlineplus/

If you don't take any medications then...never mind

For your urinary issues you may want to talk to your GYN (if you are a guy...OOPs! ). There can be different reason for urinary urgency, some are easily dealt with.

Just some thoughts

Take care!

[CarpeDiem2015]

Hi Ruffles,

I read through your first post. That you have had clean MRIs is a good sign in general across a lot of possible things. I was reading a journal article from PubMed where there are cases where an MRI had found lesions ten years before any clinical symptoms were present.

Beyond an MRI, I'm not sure what makes sense as it seems that tests are specific; and you have had many things checked out already. Almost like it would be great if there was such a general test that could show something to be abnormal and go from there.

Sorry I could not be of too much help.

~Paul

[Ruffles]

I think checking for other autoimmune disorders would be beneficial. Usually, it just requires a blood test to rule out RA and lupus. I've had dizziness with my MS and also when my blood pressure was high or low. Migraines can also cause dizziness without the headache. These conditions were ruled out before I was diagnosed with MS. Hope you get some answers soon.

Thank you for your response, I will ask about ruling out other autoimmune disorders at my next appointment.

[Ruffles]

Hi Ruffles,

Sometimes we end up playing a waiting game for testing/retesting to show something which will result in answers/diagnosis

Do you deal with stress to the point of anxiousness? I ask because I have had my fair share of dealing with anxiety and being treated for it and I know what it can do to a person physically and emotionally.

If you do then you might talk to your Dr. about treatment. If you don't then never mind .

Some medications can cause Neurological symptoms. If you take any medications you may want to check listed side effects. If you take medications and the listed side effects match with any of your symptoms you may want to talk to your prescribing Dr.

Medline is a good place to start for medication side effects:

If you don't take any medications then...never mind

For your urinary issues you may want to talk to your GYN (if you are a guy...OOPs! ). There can be different reason for urinary urgency, some are easily dealt with.

Just some thoughts

Take care!

I do tend to get stressed, however not to the point of anxiousness and have learned to deal with it over the years. I am mostly stressed when I have money issues which of course tends to be often, however I have started a small side job so hopefully I can begin to make some money there and relax a bit.

In terms of medication I am only on birth control and my vit b injection. I have switched my birth control once to a newer one and haven't had any change of symptoms, but I will look into just to make sure that is not the problem.

I'll talk to my ob/gyn at my next appointment about it.

Thanks for the response!

[Ruffles]

Hi Ruffles,

I read through your first post. That you have had clean MRIs is a good sign in general across a lot of possible things. I was reading a journal article from PubMed where there are cases where an MRI had found lesions ten years before any clinical symptoms were present.

Beyond an MRI, I'm not sure what makes sense as it seems that tests are specific; and you have had many things checked out already. Almost like it would be great if there was such a general test that could show something to be abnormal and go from there.

Sorry I could not be of too much help.

~Paul

Thanks for the response. I am really happy about the clean MRIs. I do wish there could be a simple test as it would put my mind at ease to know exactly what is going on. I'm not sure if it would be worth it to ask them to look for nerve damage elsewhere in case there was an injury in a different area that wouldn't be a big issue.

[SNOOPY]

Hi Ruffles,

I was rethinking my answer about your urinary problems.

If possible you might think about seeing a Urologist to evaluate the urinary problems you are having. The urinary tract is their specialty and it is possible for MS to cause urinary problems.

A Urologist can determine if urinary problems are related to something like MS. Multiple Sclerosis can cause a neurogenic bladder.

Anyway, just another of my 2 cents thrown in, for what it's worth

Take care

[Ruffles]

I wanted to give an update and also ask for advice. I went back to the neuro who ordered blood tests on me. I will try to post the results later today but everything was normal except one of my clotting factors was slightly off and my ra latex turbid was the high limit of normal. I was told by my neurologist at the appointment she ordered the blood tests that she would order the blood tests and felt that another mri would be a waste because the other ones came back normal. This was fine with me as I didnt want to spend the money.

She also told me that she would probably put me on some medication to see what one actually fixed the symptoms and go from there.

So when I went back for my follow up I had an appointment with her NP instead of her. Which is fine with me I figured she was either going to run more tests or go with the plan discussed and put me on some different medications to see if one resolved the symptoms. Thats not what I got at all. The NP was asking me why I needed the vitamin B. I stated because I had been low and that I was on an oral supplement but that I was not absorbing it well. To which she asked if I had chrons disease or had gastric bypass or a GI issue because if I didnt there should be no problem in the way I was absorbing it.

This got me slightly irritated because I have no idea why I wouldnt be absorbing it. The neuro said I wasnt and told me to start the injections. Its not like Im thrilled to be sticking myself. It took me over a half hour the first time. So she tells me that since the injectable is on backorder again and the nasal spray is way too expensive I should just take the oral supplement and it wasnt necessary for me to have the injections. But my doctor specifically told me I needed the injections.

Then she proceeds to tell me my blood work looked normal and what do I need her to do for me. I explained that I really just want to know if what I have could be serious and if its not then I want to know so I can stop worrying about getting a diagnosis. She tells me that its not serious right now and that everything is fine. I tell her great Im happy to hear that.

She then tells me that often times the patterns of symptoms are often seen in people who are later diagnosed with MS and that they will need to see me in 6 months, if I develop a new neurological symptom such as eye sight problems, or if I have a major neurological problem. Whichever is first.

I didnt really know what to say to the NP but this really irritated me. First off I specially told the Dr that I am having vision problems. No its not frequent but hello thats new. I also dont understand why they feel its acceptable to wait until I have more neuro symptoms or a major neurologic problem before deciding to do more investigation. If theres the thought that its MS than why are they not trying to get a diagnosis so I can be started on treatment to try and prevent me from developing more symptoms? I am terrified that if I do have MS I may become disabled or unable to safely be around horses and the NP thinks its no big deal if I develop something else. I am not comfortable with that.

So I guess Im wondering what the Drs next step should be. I plan on calling her Monday morning. My appointment was the last one Friday and I dont think she was there anyways. If I dont like what she says I will be getting a different Dr so if anyone knows of a good neuro in the Dallas Fortworth area let me know.

[Ruffles]

Update

I wanted to give an update on how my neuro appointment went and ask some questions about testing. I went back to the neuro in February and explained that the vitamin b is not resolving my symptoms and that I have been experiencing eye sight issues. My Dr decided to run a bunch of blood work and switch me to the nasal spray vitamin b. She explained an mri now would likely be unhelpful and I was fine with that. About a year and a half ago they were clean. She explained that she might put me on different medications to see if any resolved my symptoms and then go with testing from there.

I had a follow up scheduled with her NP. My blood work was normal except clotting time was a little low and the ra latex turbid was the highest range of normal. The NP really frustrated me. When I explained that the nasal vit b was too expensive and that the injectable was on back order she told me I didnt need it anyways and that unless I had chrons disease, IBS, or another gi problem I should be able to take an oral supplement. I explained my Dr had told me that I didnt absorb it well orally to which she asked me why. I have no idea I am not the Dr.

She asked me what else I needed from the visit. I explained I want to know if I have a serious condition or if its not serious. And if it was serious I wanted diagnostics done. She told me right now its not serious. So I get all excited thinking that Im fine and I dont have MS.

Then she tells me that people with the symptoms I have are often later diagnosed with MS and they need to see me in six months, if I develop a new symptom like eye sight problems, or if I have a major neuro episode which ever comes first.

First off I do have some eye sight issues which I discussed with the Dr and why are we waiting until I develop more issues to figure out whats wrong? This was the last appointment Friday so I didnt ask to see the Dr I will be calling to talk to her tomorrow. Any thought on what sort of testing would be appropriate?
I really like this Dr but Im not going to wait until I have more neurological symptoms to start getting a diagnosis. Anyone have recommendations for a neuro in the Dallas/ Ft Worth area? And of course thanks for reading my novel.

[artteacher]

Ruffles, I understand you are frustrated with this slow process to get answers for your symptoms. First of all, I want to let you know that what your neuro and NP are doing is normal protocal. I was in limbo for 4 years before my neuro was able to diagnose me. Your MRI and blood tests are normal. Until that changes, there isn't a competent neuro that will diagnose you. There really aren't any other tests for the doctor to run to test your nervous system. If you have MS, your body needs to show it through the test used to diagnose MS. Right now it is not.

I know you are stressed with this and want answers now, but it is just going to take patience with dealing with this. You give me the feeling that you think MS progresses quickly like cancer or an infection. Having an MRI in 6 months is a common time frame used. Any new symptoms that manifest themselves before that time do call for more testing earlier. Even if you were placed on a medicine for MS. (DMT) today it would not be at it's full effect until you have been on it for about 4 months. Placing you on a DMT without a definate diagnoses of MS would be dangerous as these medicines have harsh side effects.

A few avenues that you could follow up with are to see an opthamologist about your loss of vision and/or urologist about the bladder problems. (if you have not already). They can possibly find reasons for you symptoms. They can even identify if it is a neurological problem or some other problem.

Good luck and I hopr you do find an answer soon.

[22cyclist]

The eye issues they are looking for are partial or total blindness in one or both eyes, pain with movement etc. that lasts greater than 24 hours, is continuous, and nothing changes it.

If you have this, they can look in the back of your eye and see if your optic disc is pale, a sign of optic neuritis. They may also do a Visual Evoked Potential test to see if your latencies are abnormal in the optic nerves. This is a very effective test, but they are looking for signs, something they can see, not just symptoms.

Best of luck to you and hang in there!
Lisa

[Phoenix822]

Ruffles,
I can sympathize with your frustration. When one medical professional tells you one thing and the next seems to totally contradict it, it's easy to get the feeling that these people have no more idea what they are doing than the keystone cops! But hang in there.
I suggest you discuss this with your neuro. Talk about the conflicting advice you're being given. Your situation is confusing enough without your medical team within a single office pointing you in opposite directions! I like to think that your team cares and will welcome the chance to clear any confusion and ease your concerns.

[Ruffles]

Ruffles, I understand you are frustrated with this slow process to get answers for your symptoms. First of all, I want to let you know that what your neuro and NP are doing is normal protocal. I was in limbo for 4 years before my neuro was able to diagnose me. Your MRI and blood tests are normal. Until that changes, there isn't a competent neuro that will diagnose you. There really aren't any other tests for the doctor to run to test your nervous system. If you have MS, your body needs to show it through the test used to diagnose MS. Right now it is not.

I know you are stressed with this and want answers now, but it is just going to take patience with dealing with this. You give me the feeling that you think MS progresses quickly like cancer or an infection. Having an MRI in 6 months is a common time frame used. Any new symptoms that manifest themselves before that time do call for more testing earlier. Even if you were placed on a medicine for MS. (DMT) today it would not be at it's full effect until you have been on it for about 4 months. Placing you on a DMT without a definate diagnoses of MS would be dangerous as these medicines have harsh side effects.

A few avenues that you could follow up with are to see an opthamologist about your loss of vision and/or urologist about the bladder problems. (if you have not already). They can possibly find reasons for you symptoms. They can even identify if it is a neurological problem or some other problem.

Good luck and I hopr you do find an answer soon.

Its not that Im frustrated they wont give me a diagnosis. Im frustrated that they are not continuing with any sort of testing etc and that Im getting one idea from the Dr and one from the NP. My last mri was over 18 months ago. I was fine with doing the blood tests and not the mri this last time to rule our anything else as they have all been normal. I personally dont care if Im on medication or not thats the drs call Im not educated enough to know the pros and cons about the meds. What frustrates me is thats the plan we had discussed and the NP didnt even address it and instead said the complete opposite and the Dr on the vit b.

I certainly dont think that the disease progresses quickly. From what I understand it progresses at different rates for each case some never getting worse. My rush is my insurance is running out at the end of the year and I will have to switch plans to one with a lower coverage. Since the blood work didnt show anything and Im supposed to schedule a recheck in 6 months where they may order an mri i want to make sure I can actually schedule everything including follow ups etc within that time frame incase my next insurance covers much less.

I think I didnt explain everything clearly in my other posts so hopefully that clears some of the stuff up. I will respond to the other posts on here and then post an update on what I talked about with the drs office when I finally got ahold of them and my plans. Thanks for the recommendatios and the response!

[Ruffles]

The eye issues they are looking for are partial or total blindness in one or both eyes, pain with movement etc. that lasts greater than 24 hours, is continuous, and nothing changes it.

If you have this, they can look in the back of your eye and see if your optic disc is pale, a sign of optic neuritis. They may also do a Visual Evoked Potential test to see if your latencies are abnormal in the optic nerves. This is a very effective test, but they are looking for signs, something they can see, not just symptoms.

Best of luck to you and hang in there!
Lisa

Thank you for the clarification in the eyesight. I am not having those sort of symptoms. I was wondering about an evoked potentials test but it is obviously not an appropriate test for me now.

I know they need findings instead of symptoms for a diagnosis I was just so frustated with the way the NP handled the appointment.