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Not Knowing is Worse Than Symptoms- Help!
First- my heart goes out to all of you on this site who are living with MS. I've read your posts for awhile and really admire your courage and determination. Incredible what you have to go through.
I'll try to make this concise. Fall of 2011- I had sharp stabbing pains in back on right side. Lasted a few hours. Dec. of 2011- I experienced acute pain in right side- from spine in back to ribs in front- felt like muscle spasms- coming in waves- my ribs in a vise. Lasted about 2 days. I hate going to doctors so since these things went away- I let it go.
Summer of 2011- I started having dizzy spells, balance problems, and trouble swallowing- like a hesitancy to swallow. I choked on food a few times. Also had burning pain under right ribs that was coming and going. Finally- Dec. of 2012 I started looking for help and answers.
ENT- nasal polyps had returned (surgery in 2005) allergies severe- gave me nasal sprays and diagnosed me with BPV- started therapy for dizziness. 3 weeks of therapy didn't help. Allergist- put me on prednisone because I could NOT breath! This helped.
Ultrasound of gallbladder showed one small polyp- gastro. doctor ordered Hida Scan- conclusion- gallbladder is working, polyp is small and should not be causing my symptoms, don't remove gallbladder- he thinks my "burning" side and rib issues are nerve related.
Barium swallow X-ray showed only "mild esophageal dismotility"- no masses or disease.
In March - I went to ER with sudden onset of severe dizzy spell, glittery vision, pressure in left side of neck, numb and tingling in left side of face, ear, and left arm and hand. All tests found no evidence of stroke. Brain MRI w/wo contrast came back clean. The left side of my neck remained numb and painfully under "pressure" along with face and ear numbness for 3 weeks while I waited to get in to see Neuro.
Allergist put me back on Medrol because my sinuses were a mess and I was miserable . After a week on Medrol- neck pressure eased off-- I no longer felt like someone was strangling me- but numbness came and went.
Finally- to a Neurologist--- all bloodwork for lupus, RA, clotting disorders came back negative--- and he said being on Medrol would NOT have affected those blood test results. He ordered MRI of cervical spine-- 3 bulging discs from c 3 to c 7 - mild arthritis and some flattening of ventral sac- nothing he said would cause my face and neck issues.
Since the sudden onset of issues in March, I've had numbness and tingling in left side of face, ear, neck pressure, issues swallowing, ringing in ears, numbness and tingling in left arm with weakness, burning sensations in arm and areas of left leg, toes go numb, toes and bottom of feet turn purple, burning spot under right ribs that radiates at times to my back.
So....I need to pick your brains since you've all done a lot of homework on these things. Neuro. won't test me for lyme because my blood test results don't warrant it and he says I cannot have MS (at least right now) because head and neck MRI show no lesions. In all of your research when you were trying to get diagnosed- what do my symptoms mean ???? Where should I go next?
Neuro. is sending me to a stroke center for further evaluation- in 3 weeks. I really don't believe it was a stroke and this is a waste of time and money. I feel like I'm being pushed off for the time being because he doesn't really know what's wrong with me or he's waiting for.... what???
In less than a year- I've gone from an active, happy person to a being someone who is tired, aching, and consumed with worry, fear and dread. I want the old me back and I can't find a way to get there. I'm 52-- last year I felt 30- now I feel like I'm 90!
Thanks so much for listening.
I'll try to make this concise. Fall of 2011- I had sharp stabbing pains in back on right side. Lasted a few hours. Dec. of 2011- I experienced acute pain in right side- from spine in back to ribs in front- felt like muscle spasms- coming in waves- my ribs in a vise. Lasted about 2 days. I hate going to doctors so since these things went away- I let it go.
Summer of 2011- I started having dizzy spells, balance problems, and trouble swallowing- like a hesitancy to swallow. I choked on food a few times. Also had burning pain under right ribs that was coming and going. Finally- Dec. of 2012 I started looking for help and answers.
ENT- nasal polyps had returned (surgery in 2005) allergies severe- gave me nasal sprays and diagnosed me with BPV- started therapy for dizziness. 3 weeks of therapy didn't help. Allergist- put me on prednisone because I could NOT breath! This helped.
Ultrasound of gallbladder showed one small polyp- gastro. doctor ordered Hida Scan- conclusion- gallbladder is working, polyp is small and should not be causing my symptoms, don't remove gallbladder- he thinks my "burning" side and rib issues are nerve related.
Barium swallow X-ray showed only "mild esophageal dismotility"- no masses or disease.
In March - I went to ER with sudden onset of severe dizzy spell, glittery vision, pressure in left side of neck, numb and tingling in left side of face, ear, and left arm and hand. All tests found no evidence of stroke. Brain MRI w/wo contrast came back clean. The left side of my neck remained numb and painfully under "pressure" along with face and ear numbness for 3 weeks while I waited to get in to see Neuro.
Allergist put me back on Medrol because my sinuses were a mess and I was miserable . After a week on Medrol- neck pressure eased off-- I no longer felt like someone was strangling me- but numbness came and went.
Finally- to a Neurologist--- all bloodwork for lupus, RA, clotting disorders came back negative--- and he said being on Medrol would NOT have affected those blood test results. He ordered MRI of cervical spine-- 3 bulging discs from c 3 to c 7 - mild arthritis and some flattening of ventral sac- nothing he said would cause my face and neck issues.
Since the sudden onset of issues in March, I've had numbness and tingling in left side of face, ear, neck pressure, issues swallowing, ringing in ears, numbness and tingling in left arm with weakness, burning sensations in arm and areas of left leg, toes go numb, toes and bottom of feet turn purple, burning spot under right ribs that radiates at times to my back.
So....I need to pick your brains since you've all done a lot of homework on these things. Neuro. won't test me for lyme because my blood test results don't warrant it and he says I cannot have MS (at least right now) because head and neck MRI show no lesions. In all of your research when you were trying to get diagnosed- what do my symptoms mean ???? Where should I go next?
Neuro. is sending me to a stroke center for further evaluation- in 3 weeks. I really don't believe it was a stroke and this is a waste of time and money. I feel like I'm being pushed off for the time being because he doesn't really know what's wrong with me or he's waiting for.... what???
In less than a year- I've gone from an active, happy person to a being someone who is tired, aching, and consumed with worry, fear and dread. I want the old me back and I can't find a way to get there. I'm 52-- last year I felt 30- now I feel like I'm 90!
Thanks so much for listening.
When my vision loss started I felt normal and thought I would just go to the optometrist and get it fixed. As it went on and didn't show in any eye tests that she did, I slowed down and noticed that something was different. I couldn't explain it or understand it. After seeing the opthalmologist he noticed the type of vision loss pattern and said that I had suffered a stroke. Once I recovered from that shock I felt that he was wrong but again I couldn't express how alien I felt inside my own body. I let the docs do more tests regarding stroke but nothing got better. The feeling of something trying to get out of me was intense, and finally after 6 weeks they did the MRI. When I was told it might be MS I felt relieved. From that point on I just knew and had to patiently wait for the docs to catch up.
I am feeling more like myself in the last 6 months though.
Good luck with the stroke center! Having your symptoms documented for them will ease your mind considerably. I hope you are enjoying your normal. :-)
I am feeling more like myself in the last 6 months though.
Good luck with the stroke center! Having your symptoms documented for them will ease your mind considerably. I hope you are enjoying your normal. :-)
Alex- Hi--
The neurologist I saw was recommended by a friend as a second choice- the first choice doctor - there was a 2 month wait as opposed to the 5 week wait I had. I'm not sure what he specializes in, but he did tell me it was possible I had a hemiplegic migraine- and he's sending me to a stroke center because he says he's not sure how else to help me since my symptoms are lingering - numbness, etc.-- but no physical sign of stroke.
If I might ask- have you experienced (or known anyone who has) the infamous ms hug? If so, can that pain last for weeks with the rib/back pain coming and going on one side feeling like a persistent burn? That's what I'm having now- doctors say it's not gallbladder, liver, etc. Gastro. doctor told me he thinks it's nerve related pain.
The only medicine I'm taking right now is ibuprofen- not a help at all really. Was on Medrol for a month for my sinuses and I seemed to get better. Once off the steroid- symptoms have been coming back.
The neurologist I saw was recommended by a friend as a second choice- the first choice doctor - there was a 2 month wait as opposed to the 5 week wait I had. I'm not sure what he specializes in, but he did tell me it was possible I had a hemiplegic migraine- and he's sending me to a stroke center because he says he's not sure how else to help me since my symptoms are lingering - numbness, etc.-- but no physical sign of stroke.
If I might ask- have you experienced (or known anyone who has) the infamous ms hug? If so, can that pain last for weeks with the rib/back pain coming and going on one side feeling like a persistent burn? That's what I'm having now- doctors say it's not gallbladder, liver, etc. Gastro. doctor told me he thinks it's nerve related pain.
The only medicine I'm taking right now is ibuprofen- not a help at all really. Was on Medrol for a month for my sinuses and I seemed to get better. Once off the steroid- symptoms have been coming back.
What does the Neurologist you saw specialize in? I for example went to a headache specialist and she was the only Neurologist I saw who said I did not have MS because all she was looking at were headaches. You might try a MS Specialist. Yes it is hard to be diagnosed with a negative MRI. You might have to be followed by a Neurologist over a period of years before you get diagnosed.
What is most important at this stage is to have your symptoms treated with or with out a diagnosis.
Alex
What is most important at this stage is to have your symptoms treated with or with out a diagnosis.
Alex
Corrie- Thanks so much for responding. Same with me- I have no blood pressure or cholesterol, etc. issues that would make me likely for stroke and I'm now more than 6 months into dealing with my "alien" body. Did you feel that way when going through this- it's like something has taken over and no matter how hard you push against it you just can't make it leave??
This morning is actually good so far- I'm feeling not so shaky and weak- no major numbness to speak of. Imagine that-oh how I have taken so much for granted-- like being able to go to the grocery store without feeling like I'll embarrass myself by passing out from a dizzy spell or tripping and falling off a curb.
I'm putting my symptoms from the last few years in writing and I'm taking it with me to the stroke center for my evaluation- so I won't forget anything that might be important. And I guess I just have to hope and pray I get a good doctor to listen to me.
Like you said- we know our bodies- and we JUST KNOW when something is not right.
For the first time in my life- I've been very fortunate-- I see first hand how crucial it is to get not just a competent doctor but a caring doctor. Do they still make those??? Some of mine have been good- others not so much- they can make you feel like you are bothering them. Sad.
Anyway- thanks again for the encouraging words- means a lot. I think I'd better take advantage of this "normal" moment and go for a walk.
Take care..
This morning is actually good so far- I'm feeling not so shaky and weak- no major numbness to speak of. Imagine that-oh how I have taken so much for granted-- like being able to go to the grocery store without feeling like I'll embarrass myself by passing out from a dizzy spell or tripping and falling off a curb.
I'm putting my symptoms from the last few years in writing and I'm taking it with me to the stroke center for my evaluation- so I won't forget anything that might be important. And I guess I just have to hope and pray I get a good doctor to listen to me.
Like you said- we know our bodies- and we JUST KNOW when something is not right.
For the first time in my life- I've been very fortunate-- I see first hand how crucial it is to get not just a competent doctor but a caring doctor. Do they still make those??? Some of mine have been good- others not so much- they can make you feel like you are bothering them. Sad.
Anyway- thanks again for the encouraging words- means a lot. I think I'd better take advantage of this "normal" moment and go for a walk.
Take care..
Hi there, I'm glad you found us. :-) Even though I have brain lesions it is not uncommon for people with MS to have clear MRIs.
Like you, I was diagnosed with a stroke in the beginning even though all testing around that showed nothing.
In my case, I had no family history of stroke, no high blood pressure or issues with cholesterol. I'm not sure what your situation is around that though.
It never hurts to ask for a second opinion. My neuro originally thought thatI didn't have MS because it was an "atypical presentation". He did a spinal tap anyway and a lot of blood work to rule out any clotting issues that could have caused a small vessel stroke deep in my brain. At the end of all of the tests there was nothing left but MS.
It can be a horribly long journey and despite everything I only waited about 6 months for my diagnosis. You know your body better than anyone and don't hesitate to advocate for yourself. To be going through everything you have experienced shows your strength. Hang onto that an and fight for answers.
Best of luck in your journey,
Corrie
Like you, I was diagnosed with a stroke in the beginning even though all testing around that showed nothing.
In my case, I had no family history of stroke, no high blood pressure or issues with cholesterol. I'm not sure what your situation is around that though.
It never hurts to ask for a second opinion. My neuro originally thought thatI didn't have MS because it was an "atypical presentation". He did a spinal tap anyway and a lot of blood work to rule out any clotting issues that could have caused a small vessel stroke deep in my brain. At the end of all of the tests there was nothing left but MS.
It can be a horribly long journey and despite everything I only waited about 6 months for my diagnosis. You know your body better than anyone and don't hesitate to advocate for yourself. To be going through everything you have experienced shows your strength. Hang onto that an and fight for answers.
Best of luck in your journey,
Corrie
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