Scared of my DX

[HuffysAngel]

OK, I was DX in November 2011 by a Neurologist. I starter treatments even though I been scare of being DX wrong. I finally came to accept I have MS.

Anyway my daughters (Twin girls) was referred over to another Neurologist (we have different insurances) for blacking out and/or seizures. The one was dx by one doctor and another one said she didn’t have it.


A recent incident happened again to her 2 months ago and the other twin had 2 just this fall. So we did all the paperwork including family medical and I put MS.

Well once the doctor read that he started questioning my dx. (SHOCKED) I am thinking are you kidding me. Anyway he was supposed to have written an article on MS and the misDX of it. He said a lot of people do not have MS but just Migraine headaches.

I have headache due to weather change and other times but never to where it stopped me from doing anything. The only time I had one that bad is after my spinal tap. Also I never heard of Migraines causing numbness and tingling, pain in your legs and back, sleepy (unless you having one at that time), etc. but I may be wrong.

He wants me to bring in my films, not the report, the films so he can look at them himself. Now I already have serious doubts about this doctor because my daughter admitted to having headaches a couple times a month and he put her on Lyric. The other twin wouldn’t say anything but that she was fine because of fear she put on meds. I had a bad reaction to Lyric and when I told him that he said that you not her (rudely I must say).

My girls who are 18 years old does not want to go back to him at all but yet again I doubt my DX. The reason is he claim if the spinal fluid was clear you do not have MS, that the spinal fluid will be clouded. My spinal fluid was clear.

I am still so confused, in pain, tired and still don’t feel I have a concrete answer as what is wrong with me.

Sorry just had to share my day

[Justsayyes]

You sure have been thru alot with a recent diagnosis which you doubt, and then your daughter's having to see a neuro as well. Very overwhelming!

While I may suggest a second opinion, not sure this is the doc to get that from. He sounds like he is intimidating, and I think it's important to have a good relationship with your docs and trust. Daughter's don't want to go back to him, and he was rude with the Lyrica comment. You certainly are not obligated to bring him your MRI to review.

I suspect here are plenty of us here that didn't have a cloudy LP result. You can google cloudy lumbar puncture and read what that result may mean.

I don't question there may be a relationship between migraines and MS, but it is controversial. My MRI showed spots that could be migraine related even though I don't have a history of migraine to my knowledge. Other tests including LP resulted in a diagnosis. You can google migraine and multiple sclerosis and read up on the relationship.

Trust your instincts on this doctor. You might want to ask for copies of your test results for your own records, or discuss the results with your current doc to get a better understanding on your diagnosis.

I sympathize with your situation. My son had seizures and so I know how difficult that can be. Best of luck getting all this under control!

[Tawanda]

OK, I was DX in November 2011 by a Neurologist. I starter treatments even though I been scare of being DX wrong. I finally came to accept I have MS.

Anyway my daughters (Twin girls) was referred over to another Neurologist (we have different insurances) for blacking out and/or seizures. The one was dx by one doctor and another one said she didn’t have it.


A recent incident happened again to her 2 months ago and the other twin had 2 just this fall. So we did all the paperwork including family medical and I put MS.

Well once the doctor read that he started questioning my dx. (SHOCKED) I am thinking are you kidding me. Anyway he was supposed to have written an article on MS and the misDX of it. He said a lot of people do not have MS but just Migraine headaches.

I have headache due to weather change and other times but never to where it stopped me from doing anything. The only time I had one that bad is after my spinal tap. Also I never heard of Migraines causing numbness and tingling, pain in your legs and back, sleepy (unless you having one at that time), etc. but I may be wrong.

He wants me to bring in my films, not the report, the films so he can look at them himself. Now I already have serious doubts about this doctor because my daughter admitted to having headaches a couple times a month and he put her on Lyric. The other twin wouldn’t say anything but that she was fine because of fear she put on meds. I had a bad reaction to Lyric and when I told him that he said that you not her (rudely I must say).

My girls who are 18 years old does not want to go back to him at all but yet again I doubt my DX. The reason is he claim if the spinal fluid was clear you do not have MS, that the spinal fluid will be clouded. My spinal fluid was clear.

I am still so confused, in pain, tired and still don’t feel I have a concrete answer as what is wrong with me.

Sorry just had to share my day

Sounds like a horrible day. This neuro seems a bit off, but I've never met any neuro I'd like to go out and have a cup of coffee with during my M.S. travels!

I can't believe they even still do LPs. They are so archaic. Most people I've talked to with M.S. have had normal LPs, including myself. In my M.S. Specialis'ts opinion, it is not the LP, but the MRI, that is the "gold standard" in identifying M.S.

Of course, an MRI is only conducted once weird, clinical M.S. symptoms have been happening. In my case, an MRI was conducted when my feet wouldn't stop buzzing and muscle twitches so severe I couldn't sleep (plus there were other weird physical signs that even to this day I can't seem to put into words).

The Lumbar Puncture was done later down the line just to make sure the plaques were from M.S. and to rule out anything else. I think my family's history (Mom and 3 first cousins) was enough. If I had to do it again, I'd skip the LP! The headache that followed that proceedure was so painful I felt like jumping off a cliff to get relief!

I am quite tired at the moment, and not sure if I caught all the issues going on in your post. Does your neuro want to check your twins for M.S. due to your diagnosis that he doesn't even believe you have? If you do have M.S., I'm sure all concerned are a bit worried about it's hereditary components. My Mom had M.S. and then when I was 40, I was diagnosed with it too.

Hopefully they're fine, but your doc's bedside manner is not. I do worry about my daughter getting M.S. one day and give her supplements of Vitamin D as there is little more I can do right now.

Good luck with all of you. I hope none of you have M.S. EVER and if you do, that these treatments coming down the pike (and that are continuing to improve) help you to live well.

[HuffysAngel]

Yes I was DX w/ MS

Sounds like a horrible day. This neuro seems a bit off, but I've never met any neuro I'd like to go out and have a cup of coffee with during my M.S. travels!

I can't believe they even still do LPs. They are so archaic. Most people I've talked to with M.S. have had normal LPs, including myself. In my M.S. Specialis'ts opinion, it is not the LP, but the MRI, that is the "gold standard" in identifying M.S.

Of course, an MRI is only conducted once weird, clinical M.S. symptoms have been happening. In my case, an MRI was conducted when my feet wouldn't stop buzzing and muscle twitches so severe I couldn't sleep (plus there were other weird physical signs that even to this day I can't seem to put into words).

The Lumbar Puncture was done later down the line just to make sure the plaques were from M.S. and to rule out anything else. I think my family's history (Mom and 3 first cousins) was enough. If I had to do it again, I'd skip the LP! The headache that followed that proceedure was so painful I felt like jumping off a cliff to get relief!

I am quite tired at the moment, and not sure if I caught all the issues going on in your post. Does your neuro want to check your twins for M.S. due to your diagnosis that he doesn't even believe you have? If you do have M.S., I'm sure all concerned are a bit worried about it's hereditary components. My Mom had M.S. and then when I was 40, I was diagnosed with it too.

Hopefully they're fine, but your doc's bedside manner is not. I do worry about my daughter getting M.S. one day and give her supplements of Vitamin D as there is little more I can do right now.

Good luck with all of you. I hope none of you have M.S. EVER and if you do, that these treatments coming down the pike (and that are continuing to improve) help you to live well.

Tawanda
Yes I was DX with MS in November. Funny you mentioned VitiminD because the doctor called me today and told me mine was low and have me taking vitimine D pills. The doctor who was seeing my girls was trying to blame everything on headaches.

[Tawanda]

Tawanda
Yes I was DX with MS in November. Funny you mentioned VitiminD because the doctor called me today and told me mine was low and have me taking vitimine D pills. The doctor who was seeing my girls was trying to blame everything on headaches.

You actually sound quite together for being so newly diagnosed. I think I walked around like a zombie for like a year or two! I had been giving my DD 400mg of vitamin D, but now that she is getting bigger, I am going to talk to her doctor about upping the dossage. Now that summer is coming, she will get some of the real McCoy, so I am not as concerned to do that right this second. I take 5000 mg of D myself by my neurologist's recommendation. I asked him if taking vitamin D AFTER being diagnosed with M.S. is kind of like closing the barn door after the horse has already gotten out. He basically said something along the lines, "well, at least it can't hurt". Yeah, we should all be giving our kiddos D and I have passed that info on to extended family as well since there is so much M.S. in Mom's side of the family.

[Thinkimjob]

You are doing extremely well, HuffysAngel. I was like Tawanda, zombie city, for at least a year.

And I did meet a nice neurologist, in intensive care after the burst brain aneurysm.

I threw up all over him, coming off the morphine. He cleaned himself up and brought me a Mars Bar and a can of Diet Coke, because he was so pleased I was still alive.

Neither of us really felt like eating, though.