1st visit to neuro. Very depressing Thanks for reading!

[jbias]

I finally get into see a neuro. and I can tell right off that he does not care to much to discuss the thought that I might have MS.

I go down the list of my symptoms which include extreme fatigue, migranes, dizziness, word finding issues,numbness and tingling in my face/hands/feet, blurry vision, cramps in my feet and calves and right arm, burning sensation that comes and goes in my waist area sometimes in my thigh. Also I started getting a sensation that my phone was on vibrate in my pocket and it was going off, but my phone was not on my body. The fatigue started about 2 1/2 years ago and I have been getting new sx ever since. These sx come and go.

The dr said he did not think I had MS and that was that.

I should say I have had a brain and spinal MRI done about a year ago and they were negative. I was just hoping to get a lumbar to for sure rule out MS and make me feel better.

Sorry this is so long. I have just been dealing with this for so long it's a little depressing at times. I have a 7 year old that I feel like I miss out on things so much because of my sx and my fatigue. I spend most my free time laying down or sleeping.

The dr stated that for me to have MS my sx would need to come on for about 3 weeks then go away and also I would need to have optic neuritis.

I am so upset. You wait to finally get in to see a dr and this is what you get. He assumed right off that I had some muscle issues, did what I think was an EMG (with the needles and shocks) in my arms and legs that was negative.

Again thank you for any thoughts.


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Kraheera]

You don't HAVE to have Optic Neuritis to get dx'd... I have never had it. And they were very sure MS is what I had thanks to all the lesions and crap in my spinal fluid.

You should ask for a second opinion. NO doctor can begrudge you that.

[mjan]

First of all, I am so sorry for ALL you are going through. I know how debilitating fatigue is esp when you have children.

Is this neuro an MS one? I bet not. I mean many list MS as one of the areas they treat but they are NOT exclusively treaing only MS patients. He's wrong about ON.

So have you had an MRI? LP? Do not worry about the EMG results.

Remember, you are NOT alone, and try the Limboland thread for those yet diagnosed, too. We are here to help and support you for sure.

Do you have family support?

Hugs my dear, Jan

[Shashi]

I'm sorry your appointment didn't turn out as you hoped. The negative MRIs are hard to get around. (By the way, a lumbar MRI wouldn't show lesions, as the spinal cord ends at the last thoracic vertebrae and branches off into individual nerves.) Also most doctors won't diagnose you with MS with negative MRIs.

Have you been tested for other things that mimic MS? Vitamin B12 deficiency, Lyme disease, Celiac disease, Sjogren's syndrome, etc.? There are many other things that can cause the symptoms you are having. If this doctor, or any other one, hasn't tested you for these things, you need to find one who will.

I hope you find some answers soon. I know how frustrating it can be. (I've been going through the same thing for five and a half years!)

Hugs,

Lisa

[valeriem2220]

I didn't have optic neuritis either. It is NOT necessary to have ON to have MS.
I too would look for a different Dr.
I am so tired of Drs that cannot figure it out themselves so they just send the patient home with nothing.
Obviously something is wrong, Figure it out! That is what we pay them for.

[Shashi]

Oh, and no, as mentioned, you don't have to have ON to have MS. And sometimes even when you have ON, you don't get diagnosed with MS. I was diagnosed as having had mild ON back in July, but still no MS diagnosis or any other kind of diagnosis either, despite all the weird symptoms I've had for years! (I even have lesions on my MRI, but their in the wrong place and they're the wrong kind. Go figure!)

I'll be keeping you in my prayers.

Hugs,

Lisa

[lynnepynne]

um, that's all?

Jbias,
Can you say more about how things were left off:

Are there any plans for further testing (for other things)?
Did the neurologist offer any suggestions about what else it could be and ways to test for it?
Did the neuro offer to treat your symptoms?

I am curious about the answers.
(btw: I'll be honest. If the answers were no, nothing and nope then run do not walk to another neurologist. One who will take your symptoms seriously. Also take someone with you to the appointment. I am so fed up with dismissive doctors. I seem to get only those kinds. I have heard though that not ALL are like that. Just seems like many...)

IF the answers were positive: lucky you. Maybe you can get answers about what is going on, whether it be MS or something (hopefully) better treatable.

Wishing you the best!
Lynne

[hflietner]

I understand!!!

I too just had a really "fun" appt. If no other options are given and it's being left as.."Nope you don't have MS". Your next step is find someone who is interested in figuring out what it is.

Did he give you any clue into what's next?

I agree that further diagnostics are needed. And that you deserve it! I am a rule player too....however you are your biggest advocate! Whatever happens you shouldn't have to feel pushed aside!

I discussed my frustration with my PCP and she was as frustrated as I was. I have my second opinion coming up. Please keep us updated!

[Waydwnsouth1]

Hey Jbias, sorry to hear about your troubles. I am by far and away no expert but I can tell you this Find Another Doctor!

First off ON is not a pre-req to MS. Neuros will say that because approximately 85% (?) of MS'ers present with ON being the first sx.

Also, a LP is used as a dx for MS it is used to rule out other causes for your problems. Though you can be dx using a LP I think you will read and hear it is not a definite dx tool.

You can also have MS with no lesions. While it is not very common it is possible and there are people here on this board that are MS'ers with no lesions.

Lastly, be patient. It can take a long time to receive a dx. I was 7 years in the process. I had 3 neuros tell me I did not have MS and the last even insinuated I was a hypochondriac.

See your PCP for help in getting treatment for your sx. Just because you do not have a name to what is going on with you your sx are still very real. Good Luck to you and have faith!

[NeuroNixed Craig]

Hello jbias!

Welcome to MSWorld Forums where your questions are answered to the best of our ability, taken seriously even though - thank goodness - I don't believe any of the members are neurologist. (JMHO)

I think the members so far have established you are not the problem, but this particular neurologist is the problem. Apparently, in my opinion, he does not seem to be an MS specialist nor that current on the MS condition.

You appear to have a good relationship with your PCP so possibly your PCP would be in a position to refer you to a more informed neurologist. The medical community is pretty tight and doctors know which specialists are good and which fall short.

As pointed out, your journey for a diagnosis, not necessarily will it be MS, may be a long one. It took a full 10 years, five neurologists, countless MRIs, second opinions taking me from a solid MS diagnosis to unknown diagnosis to finally a completely different neurological diagnosis.

Educate yourself, become your own best health advocate and coordinate all of your specialists activities through your PCP with the PCP receiving full reports from each specialist's visit.

Yes, it is challenging, depressing, aggravating and a lot of work. In the end YOU know there is something wrong, it's affecting your work and personal life and requires investigation. A flippant, "You don't have MS," by this type of neurologist does not make it so.

You have come to the right place and know that you are NOT alone.

[seeuinct]

Hello fellow Richmonder Craig!

I am also from Richmond, Craig. Actually I got my official dx Oct 25th. Before that they wern't ready to say "oficially"?It began with eerie sx about 6 months ago and now realized I have been having strange things going on for a while before that.
I sympathize about the neuro. Mine asked me to get a second opinion. The second opinion said to wait until i have another relapse. Thanks doc! My first neuro looked at the LP and gave me the dx. So here I am!
This is a great place to go for info. Especially if you are having weird sx like the buzz you think is a cell phone in your pocket, but it's really not! Lol.
-see

[ceceliaskye]

I highly recommend that you have a second opinion. Over the course of 10 plus years and 4 different Neuros, I finally went to a "Multiple Sclerosis" center. There they carefully ruled out anything and everything else that could possibly be wrong with me. I only went this last time ( a year ago ) out of desperation. I had by this time developed an extreme dislike of neuros. My disease had progressed from RR Ms. To secondary progressive MS. I wish I would have pushed a bit harder and went to the right "source" years ago.. The first few Neuros dismissed the MRI's with lesion activity and barely spent any time with me. Now, I feel truly blessed to have "landed" in one of the top MS centers in the country. So, to make a long story short.. Look carefully, as others have suggested for a Neuro that specializes in MS.

[empirerecs]

I went to an MS seminar this weekend and learned A LOT!

One of the main things the neuros pushed was get your B12 and Vit. D tested regularly because a definciency can cause sx's to worsen and also mimic MS.

I agree, PUSH, PUSH, PUSH for more opinions.

One neurologist said that vision issues are a big sx, but not always part of the MS process, your doc is wrong. Fatigue seems to be one of the very top sx's.

I hope you feel better and get some answers soon.

[jbias]

I can not tell you all how much I appreciate your replies. I did have low vita b-12 and low vita D that has been about 2 years now. I take a shot for the b-12 every other week and a supplement for the vita D. They are both normal and have been for a long time now. We thought when we found out I was low in b-12 that was my problem and I was going to feel better in no time. I don't!

I left the neuro office with nothing but it could be fibromyalgia but he really didn't think so because I don't have the tender spots like you should and of course the one most dr's fall back on is it could be stress! That is the most upsetting to me because I know it's not from stress and I would just like some help. I did press him to see if he would do the lumbar and he said he would if I insisted. But im not sure if I would want him or try to go somewhere else. It is just very hard to get in to a dr. here. It could be months. I do want to say thank you very much again. I have had every test ruled out from my PCP. They suspect MS. That is all they have left. I don't know what else to do.

[empirerecs]

The LP was not as bad as I thought. It's not always conclusive but if you have had all the other major tests done then it could be beneficial. I would get on a waiting list for another neuro. If your PCP can facilitate an appointment for you that would be great. My neuro from my old state did that for me when I was moving so I was able to get in to the neuro about a month sooner.

I'm glad you had your blood checked and are doing well in that aspect. I really hope you get some answers.