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Rebecca85

Rebecca85

Joined
Apr 30, 2010
Messages
2,672
Location
Nottingham, UK
Just been to the neurologist regarding the white spots on my brain MRI, he says it *could* be MS, and is referring me to the ms centre for more tests :(
 
Gosh that's an unpleasant thing to hear for you. There are so many other causes of white spots on brain MRI's, so I hope the neurologist is trying to rule things out. Do you get headaches?
I hope all is ok for you - sorry you have to be put through this. Have a nice spa or treat yourself to a massage or whatever makes you feel good.
All the best.
 
I don't get headaches, except when I am tired or dehydrated. As for the white spots, he is convinced they are from inflammation- the question is whether it was a one off event (ie from a virus I had back when all this started) or whether there is ongoing inflammation. But the neurologist is the wrong expert to be making the call, I was referred to him because it was thought I had nerve damage, but it turns out the problem is in my brain :(
 
CANT be Rebecca...I refuse to contemplate that for YOU! Must be something else. Could be all the weird and wild flora caused it where you lived, or traveled.

:heart:
 
I was thinking MIDGES!!!!

Runnnnsss screaming from the room!!!! AAAArrrrrghhhhhhhhhhhhhh!!!!

No, not midges??? Can I come out now?

No Rebecca, I dont really know, but yes I am sure you cant have MS. Because I wuv you! :heart:
 
Fingers crossed for you Rebecca...really hope it isn't but if it is you get treatment asap to prevent progression.
 
HI Rebecca,

I had something similar a year ago and my neurologist at first thought I had MS too. I have a lesion in my spinal cord and it turned out to be Transverse Myelitis. When they call something a "lesion" it simply means it showed up on the MRI. They can't biopsy the brain or the spinal cord so they have various things they can do to rule out what they think might be causing symptoms. My hyper density was at C2 and C3 of my spinal cord. They had to check mine 3 months later just to make sure I didn't have a tumor. (That was a fun 3 months!) I am completely recovered now. There are lots of things that can cause white spots in the brain and lots of things that can cause weird nerve sensations that aren't MS. I know it is hard not to worry but don't cross that bridge unless you have to. I am guessing (and praying) that you won't. Sorry you even have to worry about this! I think the more they examine our bodies the more stuff they are going to find. My son's MRE for crohn's showed spots on his liver that they had to make sure weren't cancer. He is fine and the spots were nothing but they have to check it out.

(((hugs))))

Tiffany
 
Oh, Rebecca, I certainly hope it's not MS.

I will be thinking of you and sending you well wishes!
 
Aw Rebecca I hope this isn't so! I'm so sorry
Take care and know that we're all here for you hun
xxx
 
Rebecca, I am truly sorry to hear this.

I know though you have been convinced something more has been going on for a while and you've had it dismissed by the Drs as part of CD, so I am glad more is now being done to help you, even though of course we'd all rather it was not going in that direction.
 
Sorry to hear this, my sister had MS and we lost her in 2006 she did not care for her body though and when she got a kidney infection her kidneys shut down and she passed away she was only 41 years old :(
But my good friend who has it teaches runs marathons and etc..... most people who take care of them selfs and listen to the docs live normal happy lifes :)
 
I think it will a while before I get any answers! First I have to be referred to my new neurologist and schedule an appointment with him (usually 6 weeks) then be sent for tests (2-6 weeks depending on the test), then wait for the results (4 weeks), then another appointment to discuss the results (2 weeks). So could be looking at a wait of 4 months or so, and that's if everything goes to plan.

As a guide, my GP put the neuro referral in back in August/September, I got my follow up appointment last week. I can expect it to take the same again for my new neuro.
 
And thanks everyone for all your messages- I just read through them again properly and you lot are so wonderful, I don't know what I'd do without you all!
 
Rebecca85 said:
I think it will a while before I get any answers! First I have to be referred to my new neurologist and schedule an appointment with him (usually 6 weeks) then be sent for tests (2-6 weeks depending on the test), then wait for the results (4 weeks), then another appointment to discuss the results (2 weeks). So could be looking at a wait of 4 months or so, and that's if everything goes to plan.

As a guide, my GP put the neuro referral in back in August/September, I got my follow up appointment last week. I can expect it to take the same again for my new neuro.
Click to expand...

I am really thinking you must be expected to be saint to wait that long!! May I suggest a program of bribery to the nurses who make appts? I can send you some yankee candles to bribe with Rebecca. They will be like putty in your hands when they smell them, and rush tests and appts through. Also, use your winning personality and beautiful smile.
:ghug:
 
Wow Rebecca! I saw Ms the other day and was not thinking MS so I didn't see the thread! Four months seems like a long time to have to live with this unknown. I don't see how you could help but dwell on it but I hope you are able to somehow!

Were any other possibilities mentioned?
 
The other possibility mentioned is that the virus I had 2 years ago caused inflammation at the time, that has left 'scars'. But if that were the case, wouldn't everyone have scars show up on an MRI?

As for living with it, it was 18 months before I even managed to get my Gp to take me seriously. I have now had pins and needles continuously for 22 months! What difference will 4 more make?

Besides, I can't spend too much time dwelling, I have a wedding to plan!
 
Rebecca85 said:
The other possibility mentioned is that the virus I had 2 years ago caused inflammation at the time, that has left 'scars'. But if that were the case, wouldn't everyone have scars show up on an MRI?

As for living with it, it was 18 months before I even managed to get my Gp to take me seriously. I have now had pins and needles continuously for 22 months! What difference will 4 more make?

Besides, I can't spend too much time dwelling, I have a wedding to plan!
Click to expand...

UGH... doctors it has taken 8 months for me to get where I am now FINALLY I have surgery Tuesday @ 97lbs I have lost 30 lbs and am very sick which will make my healing much harder. WHY do drs think months and months is ok when you are sick?

I am praying for you :)
 
Rebecca85 said:
The other possibility mentioned is that the virus I had 2 years ago caused inflammation at the time, that has left 'scars'.
Click to expand...

Were there high or long-lasting fevers with the virus? Do the docs say it's common with bad viruses? It's something positive to hold on to!

Happy planning!
 
Rebecca...you is FABULOUS DAAARRLING!!! Planning that wedding and looking forward and being positive!!!
:thumleft:
 
Update time:

Finally got to see the MS specialist. For now they're calling it Clinically Isolated Syndrome, which is the term used for a first MS-like neurological attack. Normally, people with CIS and evidence of lesions on an MRI have an 80% chance of developing MS. However, there is evidence that treating CIS early with appropriate drugs may prevent MS ever developing. And azathioprine may just be one of those drugs. So the odds may not be quite that bad for me.

And there is a teeny chance that CIS can be a symptom of other autoimmune diseases, such as SLE or Sjrogens, so I donated several vials of blood to rule those out.

Symptoms wise, I will have to live with it. I have the number of the MS nurse if I get worse, otherwise I will be seen by the neuro in 12 months, just have to wait and see what happens.
 
I dont like to think its MS, but I dont want it to be anything wrong with you! You are too special!!! (I may be predudiced, but I'm entitled)

At least you are getting somewhere, even if it's not a concrete thing just yet.
:hug:
 
Terriernut said:
I dont like to think its MS, but I dont want it to be anything wrong with you! You are too special!!! (I may be predudiced, but I'm entitled)

At least you are getting somewhere, even if it's not a concrete thing just yet.
:hug:
Click to expand...

I hope its not MS :( my sis died from complications to MS...... its rare though for that to happen.
I will keep you in my thoughts an prayers! Misty is that your dog in your profile picture??...
 
Yes Lizz that is the new pup in the pic. But MS is not necessarily fatal, in fact, my neighbour (ex neighbour) is in the olympics this year, and now has two children. She's amazing! So MS is not great (neither is Crohns) but it sure isnt fatal.

Sorry about your sister!
 
Terriernut said:
Yes Lizz that is the new pup in the pic. But MS is not necessarily fatal, in fact, my neighbour (ex neighbour) is in the olympics this year, and now has two children. She's amazing! So MS is not great (neither is Crohns) but it sure isnt fatal.

Sorry about your sister!
Click to expand...

Oh I KNOW thats for sure my sis was bad to didnt listen the docs and drank and partied to hard .... she got a bad infection and etc.... I know a lot of people have LONG normal lifes with it and remission as well ):dance:
LOVE the puppy he is adorable!
I have 2 doggie!
 
Like I said, at the moment it isn't MS, but there's a high risk of me developing it in the future. So all I can do is take it one day at a time and see what happens. I could be one of the lucky ones who only ever has one episode.
 
Rebecca,

I am glad you have gotten some answers and I will be praying the treatment they choose for you is effective. They are making so many amazing advances with medicines I am so very hopeful for the future treatment of MS and crohn's. Thanks for the update, I have been thinking about you.

Take care,
Tiffany
 

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