Something New going on

[tanyamt]

A few days ago on my update 1 yr post, I posted about how I was having left eye pain and what I didn't realize was double vision.  

So now last night I started having left side face numbness/tingling which I have had before.

The new thing is that something strange and completely  driving me crazy is sudden tingling on left side of my tongue it gets like that kind of tickle feeling. its driving me crazy. Has anyone experienced this before?  Are these flair type things?

Seems like only being on 1 med now I am seeing and feeling again what is really going on with me. I'm not sure I was ready for this. I have been loaded with meds for a year and now these things are coming up again and not being masked. Which ultimately I didn't want things masked.

Thanks for any input!

[tanyamt]

Thanks!!

Will let you all knw how this turns out today!!! Everyone cross your fingers and toes for me I get my way lol

MS specialist

MS Specialist

lol

[kwarendorf]

You can do anything you want. it's your body and your healthcare. Ask your doctor for a referal to an MS specialist. If he refuses, fire his a*s!

We do not have to be patronized by those with MD after their names!

Go find a copy of The Empowered Patient by Elizabeth S. Cohen. Great bookk.

Kyle

[tanyamt]

Just thought of something...

Can I ask My current Neuro to give me a referral to a MS specialist?

[tanyamt]

Thanks Alex For that. I completely agree! I have been fighting for a while for a MS specialist. When I got the referral to Dartmouth Hitchcock I was excited that I was going to finally be able to see a MS specialist. But to my surprise it was a migraine specialist.

How on earth do I convince my GP to change it to a MS specialist?

[HVAC]

Neurologist specialize. Like headache specialist. I went to one to find out if I had MS and all she centered on were migraines. I had a classic MS MRI and she said I totally did not have MS. You need a MS Specialist. I had a dozen neurologist. It took a MS specialist. Most of the neurologists said it was MS but none of them would give me an official diagnosis. You have hit a brick wall with this doctor unless all you want is being treated for migraines.

Alex

[tanyamt]

Thanks you too! My hubby is yelling at me lol. I am laughing out loud literally. I like the Einstein statement so does the hubby. lol

I just don't want to have to deal with changing to another neuro and having to wait months for another appointment for this person to tell me its migraines and start back at beginning.

[kwarendorf]

It seems to me that you are causing yourself unnecessary aggravation by continuing to seek answers from this guy. He has already given you his.

Einstein defined insanity as the doing the same thing over and over again and expecting different results :-)

Kyle

[jensequitur]

Don't be afraid to jump ship to another neuro if it looks like this one will balk. It sounds like he's already made up his mind, even though the evidence is pointing in a different direction.

[tanyamt]

Ya, its like pulling teeth to get him to get him to do anything. Maybe he would be more willing to do those then the LP but not holding my breath. lol

I am set to see a Migraine specialist in Feb which my GP says will either conclude or exclude migraines. Ofcourse on a cancellation list with her to.

I am going to keep pushing with initial Neuro to get these tests done. No more waiting. No more games.

[kwarendorf]

This guy has made up his mind. You need to replace him. You need MRIs of your c & t spines to diagnose MS, done with and without contrast.

Kyle

[tanyamt]

I have had 2 done. both just brain. My neuro feels all of this is migraines and migraines only. This is why he doesn't want to do more tests.  

Like I said in my other post I have only had Migraines for 1 yr. I have about 12 spots on brain according to him only one looks like it could be related to a MS diagnosis. He feels others are migraine related. However I have ventured over to the migraine forum and I have found so many people who have had migraines for 30 40 50 yrs and don't have as many spots on brain as I do.

It just doesn't make sense to me :(

[kwarendorf]

How many MRIs have you had on of what body parts were they?

Kyle

[kwarendorf]

Hi A12 -

LPs are falling out of favor because on their own the do not point in a specific direction. They suuport other findings. These days, absent other findings docs are less likely to order LPs. It's not a question of age or being given short shrift. On theur own they are just not that valuable.

If the other findings exist LPs can provide effective confirmation.

Kyle
PS I was diagnosed at 51 :-)

[tanyamt]

See that is exactly my thing... my feeling are my Mri's  are not normal. My symptoms have been on and off for a yr with now some newer ones. Back in the beginning he said lets wait a little bit before doing a LP. ok fine.

Well now its been 14 months still the same with new symptoms I really want that LP. Do I want to be thrown through the ringer with all these tests. No, But I want to be diagnosed with whatever it is good bad or ugly.  I need to move on.

I'm crossing my fingers!!! I am going to call tomorrow. I am going to keep hounding him lol

[Artanis12]

Well, I know in my case, the LP was a very heavy straw with 8 unmatched o-bands.  

I know everyone says it's not used much anymore, but I'm certainly glad my doc did not short shrift me simply because I was older and older people generally show up with spinal lesions, or not at all, or...only has a (insert statistic of choice here)% chance of showing up with o-bands or whatever. Maybe it was a gamble for the doc, but I feel like I won the diagnosis lottery in a certain sense.

I wouldn't want a LP (no sane person does) but I'd want an LP too, if you know what I mean.

Karen

[kwarendorf]

On their own LP's don't provide a great deal of diagnostic ammo. They will only indicate if there ie inflammation in the central nervous system, not what the cause is. They are more often the straw that breaks the camel's back, if the camel's back is already weighed down by conclusive MRI results, a poor clinical exam etc.

Kyle

[tanyamt]

Thanks Kyle and Aspentoo!!

Called into Neuro this morning I am on cancelation list to get in earlier( this never worked before). And they are getting the records from eye visit and er visit from the new symptoms. He asked why I wanted to have a LP done. Geesh I wonder... I want to see if I can get a diagnosis. Not a smart neuro. I am so frustrated :(

[aspen2]

Just wanted to empathize.  ((Hugs)). You and I are paddling the same boat (also undiagnosed).  I have nothing useful to add except ... I understand the frustration of not having answers!

[kwarendorf]

Hi -

Just a point of clarifiction about MS meds. They do not treat symptoms. They are used to slow or stop the progression of the disease itself. This woulld prevent new symptoms, if the meds work, but will not address existing symptoms.

There are maany remedies for specific symptoms available. These can, and should be pursued in advance of a diagnosis.

Kyle

[tanyamt]

Thanks Alex!

Yes I have seen Neurologist. I have had 2 MRIs several spots on brain, he thinks only one could potentially point to MS. These MRIs were a yr ago we were supposed to do follow up one this month but he changed my appointment till end of Nov. The double vision comes and goes. it catches me off guard.

This left side face numbness and tingling and tongue tingling I guess is affecting my speech too. My husband and daughter pointed it out.  this is another new thing with my facial numbness.

Through out the yr my symptoms have pretty much stayed the same meaning as in what type but have come gone and come and gone. But now I seem to be getting some same but added changes to those symptoms and some new symptoms.

I honestly am at a loss in all this I just really want a diagnosis. I mean they have said migraines and have been treating me for migraines but yet I still have other symptoms going on. So if migraines are my problem then how come some of my symptoms are gone? Am I wrong in this thought process?

For you Alex, I know you have other stuff going on but once diagnosed and put on proper MS meds does some of the symptoms go away? I just want to try and get diagnosed, treated and try and feel at least a little better so I can move on and try and spend more with kids and not my doctors or trying to figure out whats wrong with me.

[HVAC]

Medication for symptoms will not cover up MS since it is a neurological condition.  A neurologist can tell with a neurological exam just where you have damage and if it nerve pain or muscle spasms or both. They can give you medication accordingly for nerve pain or muscle spasms. Then there is inflammation for that high doses of steroids. With MS you get used to living with both. If symptoms are not caused by inflammation they are caused by nerve damage which is permanent. The problem is the doctor can't tell which symptoms are inflammation and which are nerve damage. The only way to tell is when symptoms go away.

I used to think I would be diagnosed with MS and then they would fix all my problems. I still have all my nerve and muscle conditions I just understand them better.I only wish I had been on medications before I was diagnosed.

Alex

Remind me have you seen a neurologist? Have you had MRIs? Does your double vision come and go or stay for awhile? You might need steroids. In MS it either comes for awhile or is permanent. I have permanent double vision.