Good News, The Ms Specialist Doesn't Think Ms Is Cause Of Lesions

[Maxine]

The MS specialist doesn't think the lesions or my symptoms are caused from MS. My lesions are smaller then MS lesions. When I brought up the lesion on medulla, he didn't know about it, and told me to bring it up on my appontment with my regular neurologist in April.

As you can see on my signature I have cervical/cranial instability, most likely caused by the EDS. I also have a prominant vertebral artery pressing on brain stem, and a small posterior fossa. There is pannus growth on the odontoid bone, and this also presses on brain stem. Anyway, my instability is worse, and I have been getting headaches in the back of my head, and the pain gets worse with movement. If I hold my gannddaughter and rock her, just the pressure from holding her gives me problems. She's about a month old now, and is weighing 11 1/2 pounds now. Geezzzz, not that heavy at all-----can this REALLY cause me to have problems???? I know you don't know the answer, but I find it hard to believe.

I guess it doesn't take much to aggravate the instability. I had two spells this week---on the same day. The spells caused me to fall forward, but I didn't feel like passing out if that makes any sense. I just felt my usual weakness. I've heard of falling backwards, but not forward. I did have a split second of flashing light or something like that.

The MS specialist was very nice, and did not dismiss my symptoms. He just said he didn't think MS was the cause, and asked if I was getting MRIs on a regular basis, like once a year---or every six months. They will watch the lesions. My neurological exam was not normal, and we both know that I definately have neurological issues, but the problem is that I haven't been told the exact cause of those lesions. I do not suffer migraines, so that it not a cause. Some of my neurological symptoms are probably caused by the instability, and pressure on lower brain. I definately have some serious blood pooling issues, and very low BPs, and I wonder is lack of proper blood flow to the brain can cause these smaller lesions???

I sure would like to know what has caused these lesions. I told the MS Doc I was thrilled he didn't think I had MS, and he said I do not need that on top of my other health problems, and that I had a lot to deal with already. It was nice to see him understand how serious this really is. Sometimes I can't believe it, as I used to be so active, danced, walked, played fisbee----------------in fact I was one of the better frisbee players in the neighborhood. I could throw a frisbee right into the palm of the person, and I could catch anything they would throw back. It just seems so hard to believe, as now just holding my 11 pound beautiful baby granddaughter causes so much pain.

I'm in disbelief...............

Maxine :0)

[Sunfish]

maxine -

i know that you'd still like answers, but i'm sure you're relieved to know that MS is off the table. and i'm glad the doctor you saw was supportive & validating rather than an added stressor for you.

hang in there,

melissa

[pat57]

I did a search re cause of lesions. I thought it would be easy but it wasn't. I found only decortication and MS. Dr. Grubb has written that decortication occurs

during some NCS events. It is removal of organ, such as removal of bark- from a tree. Searching for definition re brain , its is removal of (can't remember the word) but folds of gray matter from cortex. I has to be from lack of oxygen or blood.

ANYWAY, hopefully drquest will stop in and decode this.

As always...... just because this is what I found... that does not indication connection in your case.

as always,

good luck

[bellaluna]

I'm sure you must be so relieved that it is not MS. As far as everything else, I can only offer big cyber HUGS to you. I hope that somebody will be able to help you with your questions.

Mary

[joiedevivre516]

I also have lesions on my brain, and like you, my doctors haven't quite figured out why. I'm SO glad yours aren't caused by MS, though -- that's really good news. I hope that they can figure out what's going on soon, and let us know if they do!

[morgan617]

glad you don't have MS! I have a friend that has lesions and her neuro told her it isn't unusual, they are often found incidentally when looking at other things, especially during middle age. She had arm numbness and stuff and they never did figure out what it was, (ruling out MS also) but it went away. Any way he said many people have have small lesions that don't seem to be indicative of anything, but who knows. morgan

[Maxine]

Thanks for your replies and support---

In April I'll be going to the EDS study at NIH/NIA, and they will be doing more MRIs, one of them being the brain. Hopefully more lesions haven't appeared. One of the radiologists listed demylination process in the differentials, and said to follow up with a neurologist. My regular neurologist also spotted a lesion on my mid medulla, and I still don't have an explanation on that. From what I read, that is not a good area of the brain to have a lesion.

There are other neurological symptoms other then my POTS/ANS symptoms, and this has really being going on since the beginning of my POTS crash. It just seems to get worse every summer, and sometimes I get breaks in the cooler weather. However, in really frigid temps. I don't do very well either. Yesterday, we went to vist my godmother, and we had to rush. My husband drove thankfully, because just rushing made me crash. It felt like the wind was knocked out of me the rest of the day, but it could have been worse. I still functioned, just not very well.

Something that has gotten worse is my speech. I slur more, especially in the evening. I also have more trouble swallowing. Sometimes my throat will swallow prematurely, and I have to gag my food back up, as it doesn't go down right. I have to be very careful. Some days it's worse then others.

This month I actually had more headaches then I ever had, meaning more days in the month. I don't usually have headaches often. The headaches I usually get are at the base of my skull, this time they are worse, and more throbbing, but sill towards the back of my head.

This may or may not be related, but I have a clear discharge coming out of my eyes, and it's burning my eye lids. It comes and goes, and I have not been able to wear eye makeup, as it irratates my eyes more. It seems a little thicker then my tears. I just wonder if my eyes are suddenly becoming allergic to my eye shadow. I have never had this happen before. I've always gone pretty light on makeup, but use a tiny amount of neutral eye shadow.

The buzzing on the bottoms of my feet is daily now. The other symptoms of numbness in arms and legs are still there along with the weakness. My legs can still push open a door ect.-----------it's more like walking difficulties, like walking through mud or sand. Whole body weakness, and when I'm doing really bad, I feel out of body, or disoriented---then start greying out. This could be my POTS/blood pooling. I don't know--------- I sure hope NIH has more answers for me, as I think I've been pretty patient with my local docs.

Maxine :0)

[Ernie]

Hi Maxine,

I am really glad you don't have MS. I hope you will find was is the cause of the lesions.

[dizzygirl]

maxine im so glad that you do not have MS.. and im so sorry that you have trouble snuggling with your new grandbaby.. that stinks!

love and hugs

dizz

[Maxine]

Thanks Dizz and Ernie-------- ,

I'm hoping NIH can help more, but have to make that 10 hour drive. However, not only will it hopefully give me more answers, t will help dr. McDonnell come up with future answers for others with EDS/ANS dysfunction.

It will be interesting to find out if the lesions could be EDS related. I looked at my feet today in the shower, and they were so engorged with blood from pooling-----(or I assume it's pooling), I was wondering how I was still standing. Sometimes I'll wash my hair in the morning via shower, rather then under the faucet if I'm not feeling too bad. I take my bath at night when my husband is home. I did fine this morning, but I wonder how. NOW I feel very worn out. I know my blood must pool, or at least it looks that way. They will be doing a flow study on me at NIH along with the other tests, so this will give me the definate answer to that.

If the blood flow is affected, I'm wondering if it's affecting my brain. Something is causing the lesions, and it's not old age yet, nor is it migraines.

Maxine :0)