Aa
Okay, so hubby won't talk to me now.
Hi Everyone:
I feel like I'm going crazy. I think some of you know my story, but I have 20 lesions on brain with all other tests coming back negative. I told my husband the other night that I think the doctors are missing something and that I believe I might have MS and he blew up and refuses to talk to me while I think that....sorry, this is personal but I'm quite upset.
I hope you all don't mind, but I would like to run my symptoms by you (the ones I can recall) and see what you think:
- In March I developed major anxiety along with numbness/tingling under left eye. Then a few days later, my legs/feet were vibrating/tingling, etc. This went on for about three months. At this time, I was put on Prozac for anxiety and all my symptoms dissapeared.
- During that time, for about a week, I was getting a tightening feeling around my bra strap area. I had had my gallbladder removed late January so I wrote it off to being something about that.
- Also during this time, for about two weeks, off and on, I was getting vibrating feelings inside my upper body area. That was strange and scary.
- Late July, I went off the Prozac because it gave me acid reflux. Slowly, the symptoms are returning again along with my anxiety. I have a slight vibration feeling in my left shin and especially notice it when I get anxious or start worrying.
- For the last couple of months, my feet/ankles hurt when I first stand after sitting or sleeping all night. I went to my orthopedic doctor about this because I'm playing a lot of tennis and thought maybe I hurt something, but xrays showed nothing. Is this an MS thing?
- I'm feeling a little tingling back under my left eye again the last few days but then again, I've been worrying like crazy again.
- What in the heck could have caused 20 lesions on my brain???? This is driving me crazy.
- Urinary....I drink a lot of water but when I gotta go, I gotta go....
- My eyeballs.....for example last night while watching tv, I felt for just a minute like someone was twisting my eyeballs in the back of my head. Ouch! No problems at all with my vision.
- Every couple of days, I get sharp shooting pains in my upper right leg. They only last for a second, but they sure grab my attention when they happen. They keep happening for a couple of minutes and then just go away.
- I have NO muscle weakness...
Okay, having said these things, my first two neurologists told me that this is all anxiety (they did not know about the 20 lesions though because I hadn't had the MRI).
Am I going crazy or if it were you, would you pursue this further? I'm supposed to have a follow-up MRI in 6 months. They didn't do an MRI on my T-Spine and I feel like I want one NOW.
I'm fretting because I keep thinking what did I do to cause this to myself..... I just feel like crying. By the way, I'm peri-menopausal so I don't know if this could be affecting my symptoms or not....
I'm sorry for my repeat postings of the same stuff, but I feel like you people are the only people I have to talk too.
Please give me an honest opinion of what you think about my symptoms and if they sound like symptoms of MS.
I feel like I'm going crazy. I think some of you know my story, but I have 20 lesions on brain with all other tests coming back negative. I told my husband the other night that I think the doctors are missing something and that I believe I might have MS and he blew up and refuses to talk to me while I think that....sorry, this is personal but I'm quite upset.
I hope you all don't mind, but I would like to run my symptoms by you (the ones I can recall) and see what you think:
- In March I developed major anxiety along with numbness/tingling under left eye. Then a few days later, my legs/feet were vibrating/tingling, etc. This went on for about three months. At this time, I was put on Prozac for anxiety and all my symptoms dissapeared.
- During that time, for about a week, I was getting a tightening feeling around my bra strap area. I had had my gallbladder removed late January so I wrote it off to being something about that.
- Also during this time, for about two weeks, off and on, I was getting vibrating feelings inside my upper body area. That was strange and scary.
- Late July, I went off the Prozac because it gave me acid reflux. Slowly, the symptoms are returning again along with my anxiety. I have a slight vibration feeling in my left shin and especially notice it when I get anxious or start worrying.
- For the last couple of months, my feet/ankles hurt when I first stand after sitting or sleeping all night. I went to my orthopedic doctor about this because I'm playing a lot of tennis and thought maybe I hurt something, but xrays showed nothing. Is this an MS thing?
- I'm feeling a little tingling back under my left eye again the last few days but then again, I've been worrying like crazy again.
- What in the heck could have caused 20 lesions on my brain???? This is driving me crazy.
- Urinary....I drink a lot of water but when I gotta go, I gotta go....
- My eyeballs.....for example last night while watching tv, I felt for just a minute like someone was twisting my eyeballs in the back of my head. Ouch! No problems at all with my vision.
- Every couple of days, I get sharp shooting pains in my upper right leg. They only last for a second, but they sure grab my attention when they happen. They keep happening for a couple of minutes and then just go away.
- I have NO muscle weakness...
Okay, having said these things, my first two neurologists told me that this is all anxiety (they did not know about the 20 lesions though because I hadn't had the MRI).
Am I going crazy or if it were you, would you pursue this further? I'm supposed to have a follow-up MRI in 6 months. They didn't do an MRI on my T-Spine and I feel like I want one NOW.
I'm fretting because I keep thinking what did I do to cause this to myself..... I just feel like crying. By the way, I'm peri-menopausal so I don't know if this could be affecting my symptoms or not....
I'm sorry for my repeat postings of the same stuff, but I feel like you people are the only people I have to talk too.
Please give me an honest opinion of what you think about my symptoms and if they sound like symptoms of MS.
Hi Carrie,
Adding on a belated welcome!
So much good info was given to you for your next steps, I have nothing to add in that area. Just if you can start to make a short list of the important points brought up by the others so you can follow your next steps toward answers.
As for hubby. Sounds that he is being selfish. He just wants you to go about your days as you always have and not acknowledge anything out loud that's going on.
If it were him going through this would you listen to him?
Remind him of this in some manner.
I'll throw myself into the mislabeled pit too. When I presented to my doc for the 1st time, she said, it's "classic stress." I'm not saying you don't have anxiety, even you mention how going off and symptoms returning. It's ok to have to take meds for this.
But, it's also important to recognize that symptoms like this cause anxst. So you could be experiencing a double whammy. Take what your body needs in that regard but definitely proceed with the next steps provided above (all reports/results, history, symptom list, etc.) and a great tip provided, leave the MS word out of convos w/hubby and docs. Let them sort it all out.
-Shell
Adding on a belated welcome!
So much good info was given to you for your next steps, I have nothing to add in that area. Just if you can start to make a short list of the important points brought up by the others so you can follow your next steps toward answers.
As for hubby. Sounds that he is being selfish. He just wants you to go about your days as you always have and not acknowledge anything out loud that's going on.
If it were him going through this would you listen to him?
Remind him of this in some manner.
I'll throw myself into the mislabeled pit too. When I presented to my doc for the 1st time, she said, it's "classic stress." I'm not saying you don't have anxiety, even you mention how going off and symptoms returning. It's ok to have to take meds for this.
But, it's also important to recognize that symptoms like this cause anxst. So you could be experiencing a double whammy. Take what your body needs in that regard but definitely proceed with the next steps provided above (all reports/results, history, symptom list, etc.) and a great tip provided, leave the MS word out of convos w/hubby and docs. Let them sort it all out.
-Shell
Oh Carrie girl, sorry to see you back here with no real dx. Sounds like you are getting a lot of good advice. My best advice is to follow your instincts. YOU know if there is something wrong with your body.
My main regret is that I didn't keep pushing my dr's earlier for dx...in my 20's and 30's. And honestly if I hadn't finally said I am not letting this go again, I wouldn't have a dx now in my 40's.
Many of your sx sound like MS BUT you know that MS mimics so many things, so keep pushing. As far as your husband goes, he is on his own journey with this just like you are. Yes, ideally he should be supporting you but sometimes, especially in lifechaning situations, we don't always act the way we should.
Give him time to absorb this. I don't think my husband really thought I had anything serious until he heard it from the dr, my friends were the same way. Just think of them as scared children who don't know how to act/react so they lead with fear which usually comes out as anger.
Whatever you are currently going through will change you, but it is you who will determine if that change is for the better or the worst. Hang there and keep fighting and be so very kind to yourself right now.
Hugs and best wishes, Julie
My main regret is that I didn't keep pushing my dr's earlier for dx...in my 20's and 30's. And honestly if I hadn't finally said I am not letting this go again, I wouldn't have a dx now in my 40's.
Many of your sx sound like MS BUT you know that MS mimics so many things, so keep pushing. As far as your husband goes, he is on his own journey with this just like you are. Yes, ideally he should be supporting you but sometimes, especially in lifechaning situations, we don't always act the way we should.
Give him time to absorb this. I don't think my husband really thought I had anything serious until he heard it from the dr, my friends were the same way. Just think of them as scared children who don't know how to act/react so they lead with fear which usually comes out as anger.
Whatever you are currently going through will change you, but it is you who will determine if that change is for the better or the worst. Hang there and keep fighting and be so very kind to yourself right now.
Hugs and best wishes, Julie
Hi Carrie, it looks like you have the medical advice well in hand here (thanks everyone !) - I would find an MS specialist to see and run all of this past that doc. A lesion load of 20+ has to have an explanation. Age isn't one ofthose.
Now for your husband - how childish of him to not be talking to you. Want us to come around and make him go to timeout until he can be supportive?
We all need someone to help advocate for our care - and I hope you can get that message through to him. Perhaps you need to stop labeling this mystery ailment as MS, but explain to him that something is wrong and you need answers so you can be treated.
I hope this makes sense. Is the neuro you see in November an MS specialist? Keep us posted, ok
Lulu
Now for your husband - how childish of him to not be talking to you. Want us to come around and make him go to timeout until he can be supportive?
We all need someone to help advocate for our care - and I hope you can get that message through to him. Perhaps you need to stop labeling this mystery ailment as MS, but explain to him that something is wrong and you need answers so you can be treated.
I hope this makes sense. Is the neuro you see in November an MS specialist? Keep us posted, ok
Lulu
Where did they do your MRI? UCSF? The reason I ask is that my first MRI was done at an outpatient imaging center. When the CU Neurology fellow looked at it his comment was: "OK. I see one interesting lesions, but this study is pretty useless. Way too muck movement artifact." I'm going for another MRI Monday evening. And it starts with 10 mg of Valium 1 hour before and 10 mg 1/2 before. He wants my head very still for the 3 T brain and c-spine. There are a lot of variables. I have no idea what images and labs the UCSF docs had to look at. I will say that if you continue to have symptoms in other parts of your body over a longer period of time, it may be time to see UCSF again. One of the big things about MS is "dissemination in time."
As you develop a history of signs (reports from all your doctors, MRIs, Labs) and symptoms (the patients symptom timeline), the doctors have more data to work with. I can see why some if these docs look like they are hedging. They get a bunch of data thrown at them (a lot of it is subjective) one time and they never had the chance to examine us when we were healthy. Like many doctors they are trying to get an idea that we are sick and our health is declining. That takes some time.
After reading a bunch of posts on here, I think the people that had a good relationship and an established health care history with their PCP have an advantage. When that PCP steps up and comes to bat for the patient and the PCP and patient are the advocates, they seem to shorten the diagnostic process. In general, I think Neurologist don't take what patients say as gospel. They will take your PCPs word that your reflexes last year were 3/3 and on your current exam they are 5+/3. Then the neurologist can see a decline.
Bob
As you develop a history of signs (reports from all your doctors, MRIs, Labs) and symptoms (the patients symptom timeline), the doctors have more data to work with. I can see why some if these docs look like they are hedging. They get a bunch of data thrown at them (a lot of it is subjective) one time and they never had the chance to examine us when we were healthy. Like many doctors they are trying to get an idea that we are sick and our health is declining. That takes some time.
After reading a bunch of posts on here, I think the people that had a good relationship and an established health care history with their PCP have an advantage. When that PCP steps up and comes to bat for the patient and the PCP and patient are the advocates, they seem to shorten the diagnostic process. In general, I think Neurologist don't take what patients say as gospel. They will take your PCPs word that your reflexes last year were 3/3 and on your current exam they are 5+/3. Then the neurologist can see a decline.
Bob
Ha ha.
Bob: I was seen at UCSF at the MS department. My first two neouro's were did not specialize in MS but then my GI doc of all people, sent me to UCSF. All testing was done there...... Do you think I should go somewhere else, or was I at the best place?
Oh yeah, another symptom that I forgot to add:
- Numbness feeling in on the bottom arch area of my left foot...comes and goes
- Strange swirling tingling sensation on my scalp...moves around....
I'm writing all these down and will come back to this string of postings with all my symptoms in it later.
Bob: I was seen at UCSF at the MS department. My first two neouro's were did not specialize in MS but then my GI doc of all people, sent me to UCSF. All testing was done there...... Do you think I should go somewhere else, or was I at the best place?
Oh yeah, another symptom that I forgot to add:
- Numbness feeling in on the bottom arch area of my left foot...comes and goes
- Strange swirling tingling sensation on my scalp...moves around....
I'm writing all these down and will come back to this string of postings with all my symptoms in it later.
And do you know what they call the one who graduates from med school dead last?
What?
Doctor
What?
Doctor
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