Had Visit With Neurologist Yesterday

[Maxine]

I went to my local neurologist yesterday, and she was very nice. She helped me focus, as she knows I've been a bit overwhelmed, and I have over lapping symptoms. She helped me focus by asking me what were the first three things I was concerned about the most----outside of my usual POTS/and spine instabilty symptoms. What's different?

I told her the fatigue is worse, and more disabling, I'm not able to walk far and have increasing weakness in legs, and speech problems---slurring. The student Doctor was concerned about my low bp, as it was 96/70---low for sitting. I told him it's been really low, even 80s over something sitting, and worse standing. I told him this is not always like that, but it has been lower then my usual lows. Meaning that by evening my BPs tend to at least get near 100/something, but lately this hasn't been happening.

She explained that my lesions are still there, and considering I do not have migraines, that it could be an MS issue, or I'm having small strokes. However, with my low BPs small strokes are not likely. She said an LP should be done, but first she is going to do Visual evoked response testing. When the student Doc was checking my eyes in the dark they were not dilating properly. But when he put the lights back on everything seemed OK.

I am concerned about having an LP because I have other neuro problems related to my spine, and have an hemangioma on my L-3-4 area. When lidocaine is used to numb the area I have toxic reactions due to the EDS----so we won't be able to numb the area.

My symptoms have been beyond my uaual POTS/spine instability issues. However, cervical/cranial instability can make a person pretty sick----especially if it's combined with congenital cervical spine stenosis/ANS dysfunction. So it is hard to tell what is causing what.

The bottom line is that the lesions are not normal-------and there is some kind of a problem, weather is be a demyelinating/MS process, ischemic disease or damage from a viral infection. These lesions have been there for a while.

Maxine :0)

[Sophia3]

Is the LP to RULE IN or out something? I am very fatigued and have trouble comprehending today.

I have read brain lesions often mean NOTHING, we all have them as we age, or they can mean 'something' which tells us nothing.

I can imagine an LP at this point, is not something fun but if it will CONFIRM or rule out something serious, and all other tests have been exhausted, I would consider it.

Sorry you have so much on your plate. Sometimes modern technology testing just aggravates and causes anxiety, as it shows things we later find MANY PEOPLE have and can scare us out of our wits. Or it can CONFIRM a dx. Meanwhile, you are in limbo looking for a DEFINITIVE answer.

With ANS symptoms and your spinal issues, so many things overlap, hard to tell where one thing ends and another begins.

I hope you get confirmation soon so you can decide the next step to take.

[dizzygirl]

LP?? uh that is lumbar puncture right?

well maxine i do hope that they can figure the lesions out...maybe if they figure that out you will feel a bit better.. if they treat wahtever is causing the lesions ... i know you have more then just that going on.. but treating the right stuff.. might actually make s big difference in how you are feleing over all...

I know your nervous about an LP being done...be sure to discuss this with your dr...the ones treating you for youe eds and stuff to girly...

hope that you get answers soon juju

HUGS

[Sophia3]

You have probably seen this site, about dx MS, but I thought I would post the link. It is interesting and unfortunately, it seems the spinal tap does give a good possible definitive answer.

They also mention having "attacks" and I have no idea if you have had these. We often have days of walking sideways or the floor FEELS sideways (well, I do with vertigo like days) of stammering or can not pronounce words correctly. But I am posting the link anyway so others can see how COMPLICATED it is to dx MS. I know others have been through the rigors of such testing.

http://www.mult-sclerosis.org/diagnosingms.html

[Ernie]

Hi Maxine,

I do hope that you don't have MS and that the lesions are nothing abnormal. You already have enough on your plate.

[doctorguest]

Diagnosis of multiple sclerosis is made based on clinical, MRI and other test (LP, for example) findings, and in some cases, MS can be difficult to diagnose. There are distinct characteristics of lesions on MRI that suggest MS diagnosis as opposed to many other diagnoses, including "non-specific". Some healthy people have MR hyperintensities for an unknown reason, and in those cases, these are called "unidentified bright objects" or UBOs (kind of like UFOs). By itself, these hyperintensities do not constitute a diagnosis of MS, which requires having attacks of neurologic deficits that can be assessed objectively by a neurologist.

Many times general radiologists interpret MRI of the brain as "possible demyelinating disease" when they see several nonspecific lesions. This interpretation by no means qualifies for a diagnosis of MS. A neuro-radiologist should be better able to look at these lesions and determine whether they are suggestive of MS lesions. I have seen many women overidiagnosed with MS based on the incorrect reading of their MRs by the general radiologists.

If you live in the area where there is a neurologist specializing in MS, you may get a definitive answer from them. You can obtain the list of MS physicians through the MS Society. Regarding the need for LP, the decision is between you and your neurologist, but I would not hesitate to seek a second opinion from a neurologist specializing in MS before proceeding with LP.

[Maxine]

Thank you for you kind words and support, and for the information you shared. I really appreciate it.-----

There is no definate diagnoses of MS, the neurologist is suspecting it based on the lesions, the radiological MRI reports, clinical symptoms, neuro exam ect. My symptoms do overlap, and spinal cord compression at the cervical spine/and cervical cranial instability can cause some of the same type of symptoms. POTS can also mimic SOME symptoms.

However, my tolerance for heat was so bad this past summer, I could hardly stand it for one minute----and instant symptoms, disorientation ect. My brain stem has some pressure on it as well, and this can also cause some MS type symptoms.

I have tried to watch my symptoms closely, and some definately differ from my usual POTS symptoms, and spine related symptoms. It's hard to tell if the instability is getting worse and causing more problems, or if my poor vascular tone from the EDS could be causing more problems with the heat. There is a lot of overlapping----

The different symptoms, other then those mentioned above---------> I have noticed are visual changes like double vision, floaters---not the usual black ones, but it looks like I'm looking through dirty water. When I get up to walk to the bathroom at night, I feel blind in one eye, like there is a thck coating over my left eye. When I turn on the light it goes away. It's only in one eye. My walking gait is terrible, and I'm having problems with that more often. I can't walk long distances, and I can't walk fast without stumbling.

I have some memory issues, and this summer it got worse----But this can be POTS......

A VEP--- Visual evoked potential has been ordered for Nov. 7th. Hopefully we can avoid the LP. I'm not afraid of the LP in general. I just can't take the LOCAL anesthetic, so the area won't be numbed. This would mean more pain, and I don't think anyone is happy about that. My tolerance for pain is high, but I'm not sure it's that high--

This summer I feel like I crashed really hard, and I was house bound more then my usual.

Hopefully I don't have MS, and I can get back to trying to get my other problems under control.

Doctorquest, there is a MS specialist in the same clinic as the neurologist who is checking for possible MS.

The lesions are in the peri-ventricular area/frontal lobes, left parietal region, and one spotted on the medulla by the neurologist.

I don't suffer migraines, which rules that out as a cause.

Either way, it's something that needs to be watched.

Maxine :0)

[pat57]

did the Neuro want another MRI in 6 months- for comparison? I believe that is protocol.

Sorry about this concern- on top of everything, Maxine.

[Maxine]

Thanks Pat57------ The neuro did do two MRI's almost one year apart each of my brain---(2006-2007), but this last one extra cuts were taken in the area where the lesions were spotted in 2006. I had lesions in 2002, but the one in 2006 and 2007 show more.

The lesions have remained the same between 2006-2007. They have not gone away.

You don't necessarily have to have lesions to have a MS diagnosis. It depends on many different things.

My symptoms have been outside of my norm, so I think this is why MS is suspected. The VEP should help in the diagnosis also.

Maxine :0)

[stellakitty]

Hey Maxine...

I just wanted to let you know... I too have terrible weakness and slurred speech (CONSTANTLY) and we have determined in my case it is from the CCI.... It's become so bad that I have "drop foot" and now I can't move my right foot AT ALL... Are you able to do Cervical Traction? Maybe that could point you in one direction or another? I don't know... I know for me it provides ALOT of relief (only while I'm hanging) and my mom can actually understand what I'm trying to say. But I don't know if it's an option for you because you've had cervical surgery and you're not decompressed... I don't know what the deal is for non invasive traction for un decompressed chiarians. I just tought I would throw that out there for you though...

Maybe you could talk to your surgeon and you could try it at PT that way if somthing happens you're in a controlled setting?

Alexa

[Maxine]

Hi StellaKitty--- ,

Yes, I have done traction, and it felt better while in it, and this was after my surgery. However, with my EDS this is probably not a wise choice long term, as it would just be stretching things more, stressing the joints and ligamants possibly causing more instability.

I know stressing the brain stem area can create speech problems.

Maxine :0)

[stellakitty]

Hi StellaKitty--- ,

Yes, I have done traction, and it felt better while in it, and this was after my surgery. However, with my EDS this is probably not a wise choice long term, as it would just be stretching things more, stressing the joints and ligamants possibly causing more instability.

I know stressing the brain stem area can create speech problems.

Maxine :0)

I know what you mean Maxine... I've been doing the traction almost daily (several times a day) along with wearing an Aspen collar (switching to a Miami J) and I've noticed my neck is sooo much weaker than it was (if I take off my collar my head falls to the side). But this is what my nsg in Iowa wants me to do, and he's the boss. Plus we have no other choice than the fusion at this point anyways as I continue to decline(and we've known that since Feb.). But if you can avoid that and the CCF I would.

I hope that you don't have MS that would be a drag on top of everything else...

[Darlene]

You still seeing the same neurologist I'm seeing?

I have had a few MRI's, and as you already know, I have lesions too, several.

She referred me to that MS Dr. I told you about a while back, but he didn't think I had MS at this time was his words.

I didn't like him. He asked me the same questions over and over again, like an interrigation. He made me feel like I was making it up or something. All I know is I have muscle weakness, and maybe thats a symptom of POTS, and I feel like I am being electrocuted sometimes, maybe thats another POTS symptom too.

I haven't had an MRI for a while or seen the neurologist in a while. I need to make an appointment with her. MCO quit taking anthem bluecross blue shield so I had to cancel my appoinment with her. I have different insurance now, I need to make an appoinment with her. One week I had a headache everyday for 7 days, an motrin 800 and an ultram 50 mg wouldn't even take the pain away.

[Guest tearose]

Sure hope you are okay with all the new information coming in Maxine.

It is good to have that diagnosis that explains what the heck is going on but you already had so much to deal with.

Did you ever wonder if the MS was there all along and only now it is being dx?

Things are coming to a new level of clarity for you recently. Do you have a new PCP? A new strategy?

I hope there will be a rest period soon from all these doctor visits!

best regards,

tearose

[ajw4790]

Wow, it sounds like you are going through so much! I unfortunetly don't have any words of wisdom. I hope that you get answers and that everything works out the best it can.

Good Luck!!!

[Maxine]

Thanks for the support and encouragement--

Darlene, I think I'm still seeing the same one---- a female--- However, no MS specialist yet.

I think you need to pursue it Darlene. I know someone who knows that MS specialist personally, and he said this Doc is full of himself, and I'm sure he believes anything that comes out of HIS mouth is gospel. I always get more then one opinion.

Tearose, it does seem this PCP may be a good fit so far, a little soon to tell. I do a lot of followup, and make sure all my concerns are taken care of. I hope he takes me seriously. He did say I have some good specialists.

I know a lot has been going on at once lately, and it all my sounds rather dramatic, but the recent tests have been revealing more issues. The EDS specialist has been great, and he has lead me to the orthopedic surgeon who confirmed the instability.

My BP has been so low, and this last one of 80/70 was just yesterday. This is what the nurse told me it was! I'm wondering why no one seemed to be all that concerned about it. I have never seen the numbers that close together before.

StellaKitty, my traction was done by a PT. It was done lying down. I'm in PT now for my back, and OI---aquatic therapy. However, after three sessions, I got sick with a virus, and was too weak to continue. The virus is finally clearing, but I'm still very fatigued and weak. I think I'm in a farily serious crash, and some days I just feel like crawling up in a box and staying there. I plan to get back into PT as soon as I feel up to it.

Tearose, I'm also giving the colonoscopy another try. I cancelled a couple times, then my Doc had a couple emergency surgeries, and she cancelled twice. We are going to go ahead an do a virtual colonoscopy due to my low BP. In her office earlier last week it was 95/something sitting---in that range anyway. They have seen it 80/something before also. The NP seemed concerned, and when the surgeon and I talked about it, she thought the virtual colonoscopy was a good idea in light of my recent set backs. She also ordered a full abdominal CT which will be done on the 12th. I don't know when the virtual colonoscopy will be done yet, as the cleveland clinic will call me with the date. The prep will be hard, but I'll find a way to get through it. All this cancer in my mothers side of the family popped up in the last year. She died with terminal cancer in Feb.---and we don't know where hers started, as she was severely neglected by her Docs, and her brother died two weeks after she did of colon cancer. My brother has colon cancer now, but we are hoping he in now in a remission. This is why the colonoscopy is important.

I'm still overwhelmed, and I'm hoping my therapist can halp me through this. This week on Halloween night I did something to my neck, and it hurt all the way around to the front. It hurts so bad in my lower cranium and upper neck right now it's insane.

I can't sleep on either side without my shoulders popping out, and causing more instability to my neck. Most nights I can't sleep with my husband as I toss and turn too much because I can't find a comfortable position, and I'll keep him awake. When I sleep on my back, my apnea is worse. My sleep study report said I had only a 41% sleep effeciency, on both side and back. Do you think maybe someone might GET IT, that my apnea could be a result of this cervical/cranial instability? I wouldn't have known about the apnea if I had not pushed to see a pulminologist.

All of the specialists I have seen are SELF REFFERAL, EXCEPT for the orthopedic surgeon who my EDS doc referred me to because he was concerned about the instability.

Thanks again for you kindness and understanding------------AND for taking me seriously---

Maxine :0)

[Maxine]

Sophia,

I haven't read much of anything on MS, other then the standard symptoms ect. I used to read a bit about MS when my friend had it. Thanks for the link, I really appreciate it--

I have read part of it, but today we are going to visit my dad for a bit, and I will probably read the rest tonight. It was nice of you to take the time to post that. I think I have kicked my virus-----keeps your fingers crossed. Hopefully I can enjoy my visit today---

I have not seen a specialist in MS, so at this point it's only a possibility I may have it. I saw two specialists in EDS, and this is when I accepted the diagnosis as "official".

I have a headache at the rear of my head today, and it's a throbbing one----ugggg----going into my neck, or is my neck pain spreading to my head---------??

I forgot to mention both of my mother's sisters have had brain tumors. One was Cancer, and one is not cancerous. The one who had cancer survived 10 years after most of the tumor was removed, and the other had her tumor removed about 5 years ago, and she is still living. the surgeons had to leave a small one there, and she is now showing symptoms again. My aunt that passed away had a stroke during surgery, and she had to stop working---(They also had to leave some of the tumor, as it was very large, and wrapped around her brain stem.

She had the surgery in Cincinnati, as the surgeons here were not able to handle the skope of her problem. She was just 2 months away from a retirement buy out package----she missed out---- Anyway, my parents took care of her until she passed away. Some of those years she lived in assisted living. She broke her arm, and her hip on two separate occasions. She was a trooper.. She had a massive hemmorage in her lower brain in Jan 2003 and passed away.

This is another reason those lesions need to be watched.

Thanks again,

Maxine :0)