These past few weeks have been difficult, to say the least. This "diagnosis", came out of no where.
Firstly, I'm a very healthy 32 year old male. One morning I woke up and felt like if my foot was asleep. I had a slight limp throughout the day, but no pain whatsoever. Next day, I couldn't move my toes and my leg was basically paralyzed from the knee down. I went to the hospital and they did 8 MRI'S and a spinal tap. Neurologist said he saw several focal lesions on my brain mri, but that the mri of my spine came back negative and my spinal tap came back negative. Neuro and ortho were having a bit of an "academic rivalry". Ortho swore it was ischiofemoral impingement syndrome and Neuro literally called her "nuts". They gave me solumedrol in the hospital and my leg was back to normal in 3 days. While in the hospital I didn't experience any pain or numbness or anything, just the paralyzed foot. I did get massive headaches, massive diarrhea; but figured it was from the barium drink for the CT scan.
I went back to the hospital for copies of everything; MRI'S, notes, etc. Neuro report stated that I slept wrong and had a compressed peroneal nerve in my right leg. NO MENTION OF MS OR ANY LESIONS!
So, I go see the same neuro for a follow up appointment and he immediately starts off by saying he's going to start me on copaxone. I was really surprised because his hospital report said that I slept wrong and I pinched a nerve. He didn't mention nothing about ms on his reports. These people from shared solutions are hounding me! Literally calling everyday trying to get me to start these meds. I have an appointment with a different school of Neurology 05/05, but I am so confused. I almost feel like they are trying to scam my insurance.
I can't even explain the depression I'm going through. Any help or insight would be much appreciated.
Thank you.
Is it MS?!? Limbo land is driving me nuts :(
Re: Is it MS?!? Limbo land is driving me nuts :(
Oh I do feel your anxiety. Especially when all the tests come back negative. I am my Father's caregiver. And, yes, he does have MS....since 1979. I bring this fact up because the initial diagnosis from a medical professional is slow and agonizing. Back then, my Dad didn't have the luxury of the internet or even much of a backlog of research on MS. And the one thing he always said was that he wished he had the tools to assist the doctors in the diagnosis. First things first... keep a diary of symptoms. Activity. Mood. Diet. Exercise....(DON'T STOP EXERCISING!! whatever the prognosis.) Even supplements. medications.
The problem with MS is that its different for everyBODY.
I know someone else whose Father had MS... and he was in pain constantly.
In contrast, before I became his caregiver.... My Dad developed Shingles....
He had it for 2 months and didn't know it.
Just PLEASE do all the research your brain can absorb.
Always get a second opinion....and a third, if need be.
I hadjust read that researchers are finding diseases that even MIMIC MS...which, of course, kinda discourages me.... my Father could have been misdiagnosed over 35 years ago.
Anyhoo, I know this isn't a total answer, by any means. But don't give up.
The initial diagnosis process can be unnerving and frustrating and numbing.
My Dad didn't.
The problem with MS is that its different for everyBODY.
I know someone else whose Father had MS... and he was in pain constantly.
In contrast, before I became his caregiver.... My Dad developed Shingles....
He had it for 2 months and didn't know it.
Just PLEASE do all the research your brain can absorb.
Always get a second opinion....and a third, if need be.
I hadjust read that researchers are finding diseases that even MIMIC MS...which, of course, kinda discourages me.... my Father could have been misdiagnosed over 35 years ago.
Anyhoo, I know this isn't a total answer, by any means. But don't give up.
The initial diagnosis process can be unnerving and frustrating and numbing.
My Dad didn't.

- lyndacarol
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Re: Is it MS?!? Limbo land is driving me nuts :(
Welcome to ThisIsMS, Kashius.Kashius wrote:These past few weeks have been difficult, to say the least. This "diagnosis", came out of no where.
Firstly, I'm a very healthy 32 year old male. One morning I woke up and felt like if my foot was asleep. I had a slight limp throughout the day, but no pain whatsoever. Next day, I couldn't move my toes and my leg was basically paralyzed from the knee down. I went to the hospital and they did 8 MRI'S and a spinal tap. Neurologist said he saw several focal lesions on my brain mri, but that the mri of my spine came back negative and my spinal tap came back negative. Neuro and ortho were having a bit of an "academic rivalry". Ortho swore it was ischiofemoral impingement syndrome and Neuro literally called her "nuts". They gave me solumedrol in the hospital and my leg was back to normal in 3 days. While in the hospital I didn't experience any pain or numbness or anything, just the paralyzed foot. I did get massive headaches, massive diarrhea; but figured it was from the barium drink for the CT scan.
I went back to the hospital for copies of everything; MRI'S, notes, etc. Neuro report stated that I slept wrong and had a compressed peroneal nerve in my right leg. NO MENTION OF MS OR ANY LESIONS!
So, I go see the same neuro for a follow up appointment and he immediately starts off by saying he's going to start me on copaxone. I was really surprised because his hospital report said that I slept wrong and I pinched a nerve. He didn't mention nothing about ms on his reports. These people from shared solutions are hounding me! Literally calling everyday trying to get me to start these meds. I have an appointment with a different school of Neurology 05/05, but I am so confused. I almost feel like they are trying to scam my insurance.
I can't even explain the depression I'm going through. Any help or insight would be much appreciated.
Thank you.
Numbness/tingling in the legs and arms is a common symptom in many conditions and is the textbook definition of "peripheral neuropathy." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following (You mention 8 MRIs and a spinal tap. Have any of your doctors ordered these blood tests?):
http://peripheralneuropathycenter.uchic ... #bloodtest\
Please note that the first blood test the U of Chicago suggests is for vitamin B12.Blood tests
Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B12 deficiencies and patients went on to develop irreversible neurologic damage.
In addition to vitamin B12, I think the initial tests should also include a vitamin D test (the 25-hydroxy D test) to rule out vitamin D deficiency. Neurological symptoms, such as yours, can result from deficiencies of either B12 or D.
Testing for a possible vitamin B12 deficiency can be done easily. These blood tests for possible vitamin D deficiency and vitamin B12 deficiency are relatively inexpensive. (Please request your own copy of any blood test results also– it is important to have the actual number results.)
Over 1/2 of the world's population is deficient in vitamin D (70% of the US population). Starting with the vitamin D test, compare your test result numbers with the range recommended by GrassrootsHealth (www.GrassrootsHealth.net)
Re: Is it MS?!? Limbo land is driving me nuts :(
I understand exactly what you are going though. I am still in Limbo land and I am coming up to almost a year of having similar symptoms as you.
A year ago my toes started to tingle while at work, and as the day progressed the tingling sensation worked its way up my leg and by the time I left work I was limping and couldn't walk normal. By that night the whole leg to my hip was paralyzed. The next day after not being able to walk and constantly almost falling over I went to the hospital where I stayed for 4 days so they could do all the tests, including, MRI, CT Scan, X-ray, spinal tap, blood work to rule out all other possibilities. I ended up being told that it was most likely MS and they put me on steroids to speed up the recovery of the leg, I ended up leaving the hospital with a walker and had to go to physiotherapy to help with getting my leg to move again.
Now fast forward a year, I have now had 2 more MRI's performed and confirmed that there is a lesion in my spine, and 2 small lesions in my brain. My right side from the hip down is still somewhat numb. I struggle with being active as my leg doesn't work the way it use to and I have been told that because of the nerve damage my leg most likely will never be back to 100%. My last neurologist appointment was 2 weeks ago, I mentioned to him that since January I have also had my right arm go numb for up to a day at a time on 3 occasions. The specialist told me there hasn't been any changes in the MRI so we will wait a year to order another MRI and to come back and see him if something changes.
In all of this, just stay positive. It is what is going to keep you moving forward. My way of looking is that if it is MS that I have then I can work with that. It is just the unknown that is frustrating. Don't let this limit you. Get out there and enjoy life. Yes, at times depression is going to creep up on you and that is alright, but get right back up and go do what you love and look on the bright side.
A year ago my toes started to tingle while at work, and as the day progressed the tingling sensation worked its way up my leg and by the time I left work I was limping and couldn't walk normal. By that night the whole leg to my hip was paralyzed. The next day after not being able to walk and constantly almost falling over I went to the hospital where I stayed for 4 days so they could do all the tests, including, MRI, CT Scan, X-ray, spinal tap, blood work to rule out all other possibilities. I ended up being told that it was most likely MS and they put me on steroids to speed up the recovery of the leg, I ended up leaving the hospital with a walker and had to go to physiotherapy to help with getting my leg to move again.
Now fast forward a year, I have now had 2 more MRI's performed and confirmed that there is a lesion in my spine, and 2 small lesions in my brain. My right side from the hip down is still somewhat numb. I struggle with being active as my leg doesn't work the way it use to and I have been told that because of the nerve damage my leg most likely will never be back to 100%. My last neurologist appointment was 2 weeks ago, I mentioned to him that since January I have also had my right arm go numb for up to a day at a time on 3 occasions. The specialist told me there hasn't been any changes in the MRI so we will wait a year to order another MRI and to come back and see him if something changes.
In all of this, just stay positive. It is what is going to keep you moving forward. My way of looking is that if it is MS that I have then I can work with that. It is just the unknown that is frustrating. Don't let this limit you. Get out there and enjoy life. Yes, at times depression is going to creep up on you and that is alright, but get right back up and go do what you love and look on the bright side.
- lyndacarol
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Re: Is it MS?!? Limbo land is driving me nuts :(
Welcome to ThisIsMS, ali7.ali7 wrote: I am still in Limbo land and I am coming up to almost a year of having similar symptoms as you.
A year ago my toes started to tingle while at work, and as the day progressed the tingling sensation worked its way up my leg and by the time I left work I was limping and couldn't walk normal. By that night the whole leg to my hip was paralyzed. The next day after not being able to walk and constantly almost falling over I went to the hospital where I stayed for 4 days so they could do all the tests, including, MRI, CT Scan, X-ray, spinal tap, blood work to rule out all other possibilities. I ended up being told that it was most likely MS and they put me on steroids to speed up the recovery of the leg, I ended up leaving the hospital with a walker and had to go to physiotherapy to help with getting my leg to move again.
Now fast forward a year, I have now had 2 more MRI's performed and confirmed that there is a lesion in my spine, and 2 small lesions in my brain. My right side from the hip down is still somewhat numb. I struggle with being active as my leg doesn't work the way it use to and I have been told that because of the nerve damage my leg most likely will never be back to 100%. My last neurologist appointment was 2 weeks ago, I mentioned to him that since January I have also had my right arm go numb for up to a day at a time on 3 occasions. The specialist told me there hasn't been any changes in the MRI so we will wait a year to order another MRI and to come back and see him if something changes.
I am curious – in the bloodwork done a year ago "to rule out all other possibilities," what were your actual number results for the vitamin D test (the "25-hydroxy D")?
In January, my test results of 24 ng/mL were low, frankly deficient.
Re: Is it MS?!? Limbo land is driving me nuts :(
Hi lyndacarol,Welcome to ThisIsMS, ali7.
I am curious – in the bloodwork done a year ago "to rule out all other possibilities," what were your actual number results for the vitamin D test (the "25-hydroxy D")?
In January, my test results of 24 ng/mL were low, frankly deficient.
I just quickly looked through my records to see. It appears that vitamin D was not tested. I think being from Canada it is pretty much a given that there is a deficiency in Vitamin D. We lack the natural Vitamin D up here.
- lyndacarol
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Re: Is it MS?!? Limbo land is driving me nuts :(
Yes, living in Canada with its high northern latitude does mean you don't get enough of the right sun rays to produce vitamin D in the skin.ali7 wrote: I just quickly looked through my records to see. It appears that vitamin D was not tested. I think being from Canada it is pretty much a given that there is a deficiency in Vitamin D. We lack the natural Vitamin D up here.
Since this is accepted knowledge, I am surprised that the vitamin D test is not routinely done there. I am not acquainted with healthcare in Canada; but if it is possible, call your GP and request the "25-hydroxy D" blood test. I think it is especially important for you to have your vitamin D level tested – it is entirely possible that vitamin D deficiency could be playing a role in your neurological symptoms. It would be a shame to overlook this potential problem.
Re: Is it MS?!? Limbo land is driving me nuts :(
"I can't even explain the depression I'm going through"
You don't have to as most here can understand and empathize. There are many things you can do to deal with this, and it is very important that you do and do it quickly. Do a search on the web and if necessary speak to your doctor.
You don't have to as most here can understand and empathize. There are many things you can do to deal with this, and it is very important that you do and do it quickly. Do a search on the web and if necessary speak to your doctor.