froggyfog
06-06-2007, 12:46 AM
Well I should be happy my husband had his second MRI of the brain( first one done without contrast, this one done with) and both were negative for any lesions etc. Everything was normal. :)
His spinal tap was also normal. So I guess we are still looking for what is going on....I really thought he had MS....he has heat intolerance, double vision, electical sensations, numbness in his thigh, and back pain and occasional pain in hands/feet. Plus hes been fatigue. His VEP was 4.8 with 5.0 being abnormal.
OK I know I am rambling but it is very nerve racking not knowing what he has. Any thoughts would be greatly appreciated.
Thanks for listening.
Froggyfog
His spinal tap was also normal. So I guess we are still looking for what is going on....I really thought he had MS....he has heat intolerance, double vision, electical sensations, numbness in his thigh, and back pain and occasional pain in hands/feet. Plus hes been fatigue. His VEP was 4.8 with 5.0 being abnormal.
OK I know I am rambling but it is very nerve racking not knowing what he has. Any thoughts would be greatly appreciated.
Thanks for listening.
Froggyfog
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Bearygood
06-06-2007, 12:47 AM
froggy, what does the neuro say?
froggyfog
06-06-2007, 01:07 AM
We didn't have the Neuro appt yet.....what I did was had the hospital fax us a medical release form and my husband signed it ,then the hospital was able to fax us the report.
I wanted the Neuro to do a MRI of his cervical(upper spine) when he was doing the brain one but the doc said he just wanted to check the brain and if we needed too we could check the spine later....Have you ever heard of someone having lesions in their spine but not their brain??? Could a person have symptoms and no lesions be present and spinal fluid be clear????
My husband got sick to his stomach today and threw up, he was driving his truck at the time and had to pull over. He said he had been nasusated(sp)on and off for a few weeks. That could be his meds or something.....I made him an appt with his primary for tomorrow because this is not normal and we need to find out what wrong.
Froggyfog
I wanted the Neuro to do a MRI of his cervical(upper spine) when he was doing the brain one but the doc said he just wanted to check the brain and if we needed too we could check the spine later....Have you ever heard of someone having lesions in their spine but not their brain??? Could a person have symptoms and no lesions be present and spinal fluid be clear????
My husband got sick to his stomach today and threw up, he was driving his truck at the time and had to pull over. He said he had been nasusated(sp)on and off for a few weeks. That could be his meds or something.....I made him an appt with his primary for tomorrow because this is not normal and we need to find out what wrong.
Froggyfog
Bearygood
06-06-2007, 01:33 AM
Have you ever heard of someone having lesions in their spine but not their brain??? Could a person have symptoms and no lesions be present and spinal fluid be clear????
I'm not sure if lesions can be present only on spine if they're not on the brain -- but I'd guess yes. I don't really see why that couldn't be the case and I also just learned it's possible possible for lesions to be present on the thorasic spine as well. If you find out the answer to that question, if lesions can independently be on the c or t-spines, please post!
As for the second part, there are many people even on this board whose tests are coming up clean but their symptoms are real!
I thik it's great you're calling your PCP. I've said this many times -- not that I ever underestimated the importance of having a good general doctor but this situation proved it to me many times over! I bailed the first time I tried to do an MRI (I'm a veteran now, LOL) and had to call my internist for a valium prescription. Turns out the best thing I ever did was to have that panic attack! It was the reason he found out what was going on and things TOTALLY changed for me when I involved him. He's now my "team leader" for sure! He changed the course of my whole dx process. I hope that you and your husband get as luck as I do, froggy. Please keep us posted.
I'm not sure if lesions can be present only on spine if they're not on the brain -- but I'd guess yes. I don't really see why that couldn't be the case and I also just learned it's possible possible for lesions to be present on the thorasic spine as well. If you find out the answer to that question, if lesions can independently be on the c or t-spines, please post!
As for the second part, there are many people even on this board whose tests are coming up clean but their symptoms are real!
I thik it's great you're calling your PCP. I've said this many times -- not that I ever underestimated the importance of having a good general doctor but this situation proved it to me many times over! I bailed the first time I tried to do an MRI (I'm a veteran now, LOL) and had to call my internist for a valium prescription. Turns out the best thing I ever did was to have that panic attack! It was the reason he found out what was going on and things TOTALLY changed for me when I involved him. He's now my "team leader" for sure! He changed the course of my whole dx process. I hope that you and your husband get as luck as I do, froggy. Please keep us posted.
KTMorra
06-06-2007, 10:18 AM
Have you ever heard of someone having lesions in their spine but not their brain??? Could a person have symptoms and no lesions be present and spinal fluid be clear????
Froggyfog
Hi Froggy
I am that someone. My head MRI is clear, I have several lesions on my C-spine and T-spine and have had 3 spinal taps all 3 came back basically clear. Increase in white cells I think with the last one. I also have recurrent optic neuritis. My Neuro sent me to another specialist who deals with patients that have another disorder called Devic's disease. It mimics MS in symptoms in many ways but the major difference is the placement and size of the lesions. The brain is usually clear. The specialist did the usual neurological exam, looked at my MRI's and blood work and concluded that the lesions weren't the right shape for Devic's but I definitely had MS. Just atypical presentation of MS lesions is what he said.
You may want to mention this to your husband's Neuro, it is a rare disease and there arent a lot of studies out there on it.
Hope this helps
Best of luck to both of you
Kt:wave:
Froggyfog
Hi Froggy
I am that someone. My head MRI is clear, I have several lesions on my C-spine and T-spine and have had 3 spinal taps all 3 came back basically clear. Increase in white cells I think with the last one. I also have recurrent optic neuritis. My Neuro sent me to another specialist who deals with patients that have another disorder called Devic's disease. It mimics MS in symptoms in many ways but the major difference is the placement and size of the lesions. The brain is usually clear. The specialist did the usual neurological exam, looked at my MRI's and blood work and concluded that the lesions weren't the right shape for Devic's but I definitely had MS. Just atypical presentation of MS lesions is what he said.
You may want to mention this to your husband's Neuro, it is a rare disease and there arent a lot of studies out there on it.
Hope this helps
Best of luck to both of you
Kt:wave:
3love
06-06-2007, 10:48 AM
Beary- You said ...."Turns out the best thing I ever did was to have that panic attack! It was the reason he found out what was going on and things TOTALLY changed for me when I involved him", why was having a panic attack the best thing? Just curious as to why it was the best thing ? Can you please elaborate?
Later,
J
Later,
J
Bearygood
06-06-2007, 11:17 AM
KT, I thought that was the case. Really makes me wonder WHY, if the patients' histories/symptoms are compatible with MS (or Devics, or any other condiitons where lesions can be present), that they don't do a c-spine in conjunction with the MRI -- it only adds 15 minutes; just so easy to do at the same time! Makes me think it might be an in$urance i$$ue but still...things sound like they need to change.
Julia, I said that because I never would have thought to get in touch with him otherwise -- the only reason was to get the valium prescription. He is concerned and involved and wants to get to the bottom of any mystery with me. He helped me get into the fist specialist I saw quickly by picking up the phone himself and making a call. He also provided answers to things just recently; things I left my MS specialist's visit without. It's not that my MS specialist isn't good; it's just that I realize now when I go there we're only going to be talking about MS. I'm sure it's too general a statement to say that all specialist's are myopic but some are and I just think that is something to have in mind.
Hope this makes sense.
Julia, I said that because I never would have thought to get in touch with him otherwise -- the only reason was to get the valium prescription. He is concerned and involved and wants to get to the bottom of any mystery with me. He helped me get into the fist specialist I saw quickly by picking up the phone himself and making a call. He also provided answers to things just recently; things I left my MS specialist's visit without. It's not that my MS specialist isn't good; it's just that I realize now when I go there we're only going to be talking about MS. I'm sure it's too general a statement to say that all specialist's are myopic but some are and I just think that is something to have in mind.
Hope this makes sense.
3love
06-06-2007, 03:16 PM
Beary- it's GREAT that you have a pc that actually cares! It is soooo hard to find a good doc.
BE well,
J:wave:
BE well,
J:wave:
froggyfog
06-06-2007, 05:48 PM
Thanks Everyone!
My husband got sick yesterday.....he said he had been nauseted on and off for awhile. He was in his truck and had to pull over to throw up. I made him an appt to go see his primary today. The primary gave him some extra Prevacid (he was taking one pill a day and now he wants him to take two).
Anyway the PCP said the electrical sensations he is having is definitely neuro related. He told me you could have symptoms without having lesions. But he was honest and said he didn't have a clue what was going on......he ordered some blood work and was also going to check his B12 level.
I called the neuro doctor when we got back and they are suppose to see if they can move up his appt.....I'm now waiting on them to call me back.
Froggyfog
My husband got sick yesterday.....he said he had been nauseted on and off for awhile. He was in his truck and had to pull over to throw up. I made him an appt to go see his primary today. The primary gave him some extra Prevacid (he was taking one pill a day and now he wants him to take two).
Anyway the PCP said the electrical sensations he is having is definitely neuro related. He told me you could have symptoms without having lesions. But he was honest and said he didn't have a clue what was going on......he ordered some blood work and was also going to check his B12 level.
I called the neuro doctor when we got back and they are suppose to see if they can move up his appt.....I'm now waiting on them to call me back.
Froggyfog