I am in the process of being diagnosed

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I am in the process of being diagnosed

Postby gigi » Mon Dec 28, 2009 8:05 am

Hi, I am new to this site, and unfortunately to MS. My neurologist told me he looks like i have MS. I have 10 lesions in my brain and 1 in cervical spine. Scheduled for spinal tap and VER next week. I have a question to ask. My symptoms appeared to worsen over the weekend. Last nite I was awakened by chest pressure..? the bear hug? and twitching in arms and legs. I also developed vibration feeling in neck and shoulder, and slight dizziness and slightly off balanced. These are new symptoms, I continue to have numbness in my hand and feet as well asa various burning sensations. My right side feels weak, but is able to function. I called my neurologist 2 hrs ago to see if he could see me today ( have an appt already scheduled for next week) So far, I have no response. We have planned a vacation ALL year and are scheduled to leave in the morning. I am afraid to go for fear I am suddenly going to get worse and will be 5 hours away from my doctor and will be in snow. Should I go?
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Postby LR1234 » Mon Dec 28, 2009 8:13 am

Hi Gigi,
Welcome to the site. I am sorry to hear about what you are going through.
Being told you have MS (or might have MS) can be really frightening.
I am not sure what to advise you with regards to going away.

When I first got diagnosed I was in such a state and didn't want to do anything but as I started to feel better I went back to doing everything!

When I go away, I take my LDN, some meds for vertigo (incase I need it) also my neuro is happy for me to take oral steroids with me if I need them (If I have a relapse) thankfully so far I have not used them.
If you go away also take a letter saying you have MS so if you do need to be treated with steroids or need treatment that hospital/dr will know what to do.
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Postby CRHInv » Thu Dec 31, 2009 11:33 am

Hi Gigi!
I am glad you found this place and hope we can give you the support you need. I just read your post and I am wondering if you went on your trip. If you did, know that I have my fingers crossed that all is going well. It is so hard to know what is the right thing to do.
I am thinking of you!
Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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bizzare sx are frustrating

Postby gigi » Sat Jan 02, 2010 6:56 pm

I did go on my trip. I saw my neuro before I left. I was a bit frustrated with him because he said sure i could go because if anything happened I wouldn't die or stop breathing. I felt he was belittling me a bit. He initially was going to offer IV steroids, then said he didn't think my sx were bad enough. He was irritated that I wouldn't let him to the lumbar puncture until after I got back from my trip. I did okay on my trip... did have a day where I was limping somewhat with my right leg as it felt weak. Does this happen to anyone else? The bizzare sx are driving me crazy. Does anybody have the sensation that their head is vibrating and then it stops and starts as if turning a switch on and off? I also feel like I am losing my mind...very forgetful, use the wrong words. My neuro blows off my complaints about cognitive issues saying i shouldn't be having those problems because my disease didn't look that advanced on the mri. He hasn't even asked/checked for any memory issues! I asked him what type of MS he thought I had and he immediately said relapsing, remitting.... because i had 10 lesions on my brain. When I asked how long he thought i had it he said oh you probably got it about 10 years ago. I found this conflicting because before he was telling me how unusual it would be for me to get ms at my age of 47. I am thinking i have had these sx for the past year and it has progressively gotten worse. (I had a mri 4 yrs ago that showed one non-specific lesion but this was on the "older mri scanner") I guess I should just sit tight until I get all the test results back. Then maybe I will get a 2nd opinion. How can I find a neuro that specializes in MS? Any advice would be appreciated!
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Postby CRHInv » Sun Jan 03, 2010 6:57 am

Gigi, I am so sorry you are going through this. I can totally relate. I was dx at 46. I did two rounds of steriods, but I never really felt like they helped, I really felt more like I had been poisoned, so I don't really know how I feel about steriods.
I also feel like I am losing my mind...very forgetful, use the wrong words

This was happening to me too. It started with forgetting things and word finding difficulties and then I started slurring my words. I hated this. I also had a 'seashell' feeling in my head. Like the static or fuzz you get when you yawn, but it was constant.

I am thinking i have had these sx for the past year and it has progressively gotten worse.

I had noticed that I was not thinking that great before things hit the fan with the physical symtoms, but I just thought it was the 'over 40' thing.

I think I would go ahead and get your dx. I don't know about how to find an ms specialist, sorry. Be sure to investigate the treatments part of thisisms. There is a lot of information there and I think it will help you with how you want to handle all of this.

I started out by doing the diet and exercise thing and copaxone. When I learned about CCSVI I kicked the exercise up. The things I had read before seemed to stress not stressing your body, so I had been going that way. CCSVI seemed to say that your blood wasn't moving, so I decided to move mine. I don't think this is a good course for everyone and I was actually pretty scared to do this, but it seemed to work for me. I am very lucky that my MS has not affected my legs. I used to run, but hadn't in quite awhile. The day I ran just one block, about a block later I had the wierdest sensation. My seashell head 'broke'. It was actually pretty alarming, like I needed to hold on to something, but all of the sudden the seashell feeling was gone. The thinking and other issues were still a problem, but it was nice to loose the fuzzy sound in my head. Anyway, I bumped the running up to a mile a day and I noticed the word slurring improved quite a bit. The word finding and forgettfulness seemed to remain. I know this isn't something everyone can do and it probably isn't something that everyone should do. This is just my experience.

Now, I am waiting for my two month follow up with Dr. Dake. I have had some amazing improvements. My favorite part is that I can think, find words and I don't slur anymore. There is something to this.

Take care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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don't know what to think now

Postby gigi » Sat Jan 16, 2010 9:49 am

I went back to my neuro this week to get all my results back. The VEP was negative, LP was essentially negative...the myelin protein was slightly elevated. I was all set for the doc to put me on dmd because the mri looks so conclusive of MS...lesions in brain ( showing a finger? pattern) The radiology report said it looked consistent with demyleinating white matter most likely representing MS. Anyway the doc says well you are 47! That just doesn't make sense....50/50 you have MS. It may be hardening of the arteries! or some other brain disease. I asked if there was more tests we could do and he said oh sure there are a ton of tests we can do. We can do a brain biopsy! He totally seems to down play my sx. He said the number 1 sx MS pts complain of is fatigue. So I said, did I not tell you I had fatigue? (I haven't been able to work for 3 weeks due to feeling tired, weak) He laughed at me and said everybody has fatigue! Who isn't fatigued in today's world! He had found out that I was going to seek another opinion so he said go get the 2nd opinion and have them send me a report. When I went to leave the staff said the doc said come back as needed! So what do you think? Do you think I have MS? I'm so frustrated and confused!
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Postby dlb » Sat Jan 16, 2010 11:57 am

Hi gigi and welcome to the site. I'm really new here too!

I think you are best to seek another opinion. I didn't mesh very well with my first neuro but I had a wonderful GP that said it in a nutshell "neurologists are a different breed" or something to that effect. Personally, I think they are just so brilliant that their people skills really bite! In any case wonderful GP, set me up with a different neuro that I really like. In Canada, you need to be referred to a specialist - you don't just go on your own.

Do you have MS????, I think you need to continue to search for the answer with the help of a good professional that you can trust. I know that when I was first diagnosed - told by the first neuro that he was 100% sure that I had MS, my symptoms went through the roof. Stress is an incredible factor in my well being where MS is concerned. Everyone experiences slightly different symptoms & then there are very classic symptoms that many suffer from. I think where the lesions are in ones body depicts the symptoms one experiences. The day I got those fateful words, I had been experiencing some bi-lateral lack of sensation/temperature, numbness, tingling in my legs for the second time. When I heard the likely dx, I fell apart emotionally & my symptoms went nuts, creeping up my body & I felt a tightening around my waist & torso like I was wrapped & being squeezed up by a huge boa constrictor. All because of my emotional state. I have had that fuzzy feeling in my hands (when I'm doing things like mowing the lawn). The vibration from the mower really gets to me but only when I'm experiencing an attack. When I was diagnosed & the symptoms got worse, I was administered steroids & although they gave me very quick relief (for which I'm grateful), I hope I never have to do that again.

I am so sorry you have to go thru this, it is such a difficult time & I hope you soon find answers. take care....
Deb
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Postby CRHInv » Sun Jan 17, 2010 5:58 am

I think you need a new doctor. The fatigue comment is terrible. He just doesn't get it.
I'm so frustrated and confused!

It is terrible to have to figure this out when with fatigue and brain fog. You are right this is confusing and very frustrating. Try to keep plugging along and know that we are here for you.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby LoveActually » Sun Jan 17, 2010 3:34 pm

Ditch the Doctor! Get copies of all your results from him, for EVERYTHING. Find an MS Specialist. All you need to do to find one is a little research. Maybe start at a hospital in your area that has great reviews and search their website for an MS Specialist. If you don't find one, try another hospital. There has to be one somewhere around you. And even if you have to drive a little further than you'd like, it's worth it for your health!

I'm not saying an MS Specialist is going to be friendlier than the last but they'll definitely know more about what to look for and other tests. A brain biopsy sounds absolutely ridiculous to me. What did the lumbar puncture show? Either way, definitely get a second and maybe even a third opinion before you let someone go diggin' around in your brain.

And sorry if I sound bitchy. LOL! Some doctors just piss me off!
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby Mike56 » Mon Jan 18, 2010 12:22 pm

Hi Gigi, welcome,

I had a brain biobsy because the Neurosurgeon and the Neurologist figured my largest lesion in the middle of my brain was likely a tumor. It turned out it's not a tumor, so I'm back to no real diagnosis other than 'possible MS'. I don't want to scare anyone, but make sure they really feel they need to do a biopsy before you agree to it.

As for you being 47...so what! I'm 53, and male, and my new Neuro at the UBC MS clinic said my age means nothing! If I have MS, I have MS no matter what.

I have an appointment in about an hour with my GP to get the results of the latest batch of tests ( 3 evoked potentials, more blood tests, chest CT, and gallium scan) so I gotta get going.

Mike
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Postby dlb » Mon Jan 18, 2010 8:38 pm

Hi gigi,

Regarding the age issue. I was diagnosed at the age of 47 in 2005. My neuro felt that it hadn't been brewing for a long time because I didn't have a high burden of disease (whatever that means???). All I'm saying is that it is unfair that this man is basing his decision about whether you have MS or not, on your age. I haven't looked at my MRI results to see the number of lesions I had & I haven't had an MRI since 2005. I have an app't with my neuro on Wednesday, so it will be interesting to see what she's saying about CCSVI. I have communicated by email with her & she seemed very interested - so I'm looking forward to the app't.
Deb
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