I'm so confused. Could I have MS?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

I'm so confused. Could I have MS?

Postby Jobo » Mon Jul 14, 2014 9:57 am

Hi everyone,

I'm a 23 year old guy and for the past year I have been having some problems with sensation on my entire body. My skin sensation almost feels slightly muted. It's not a tingling pins and needles type numbness. I can still feel pain. I also have fatigue, brain fog, mild depression and occasional dizzy spells (I've had these symptoms for a long time).

So this started about a year ago. It seemed to come all of a sudden. Like I noticed it one morning. The first thing I noticed was that my penis was not sensitive anymore. I compared the sensation on my penis to my lower stomach and it felt the same. It was like my whole body sensation was slightly muted. I was pretty worried so I made an appointment with a general practitioner.

First thing I asked about was the loss of sexual sensation and my doc suspected low testosterone. He then ordered a complete hormone panel and everything came back in range. My total testosterone was about 450, but my free was just barely over the within range point. Doc said this was fine and shouldn't cause the loss of sensation down there. He then referred me to a neurologist.

The neurologist suspected MS as a possibility for my symptoms. So first thing he ordered was an MRI of my head and spine. Both showed up fine. Then he had several blood tests done to rule out other things such as Lyme, syphilis, and B12. All came back fine.

Neurologist then ordered an eye test that tests for things like MS. I had that done and it came back normal.

My neurologist is now pretty confused and says he is not sure what to do now. He said he could try one more test called a spinal tap (lumbar puncture?) or he could try referring me to the Cleveland Clinic. He said he wasn't confident that the spinal tap would show anything because the MRI tests are about 99% accurate in diagnosing MS (his words, not mine). But he said it wouldn't hurt to check a spinal tap anyway.

I'm now really confused on what is wrong with me. I'm not sure if its even worth trying the spinal tap now. Is it worth trying?

The main symptom that has me down is the sexual sensation loss. I saw one other guy on this forum complain about a symptom similar to this, but I think he wasn't clearly diagnosed with MS either. I'm not sure what his progress is now since he hasn't been back in a few years. Anyone have experience with a symptom like this?

Anyway, I'd appreciate any advice on my situation. Thanks.
Jobo
Newbie
 
Posts: 4
Joined: Sat Jul 12, 2014 11:06 am

Advertisement

Re: I'm so confused. Could I have MS?

Postby lyndacarol » Mon Jul 14, 2014 11:16 am

Jobo wrote:Hi everyone,

I'm a 23 year old guy and for the past year I have been having some problems with sensation on my entire body. My skin sensation almost feels slightly muted. It's not a tingling pins and needles type numbness. I can still feel pain. I also have fatigue, brain fog, mild depression and occasional dizzy spells (I've had these symptoms for a long time).

So this started about a year ago. It seemed to come all of a sudden. Like I noticed it one morning. The first thing I noticed was that my penis was not sensitive anymore. I compared the sensation on my penis to my lower stomach and it felt the same. It was like my whole body sensation was slightly muted. I was pretty worried so I made an appointment with a general practitioner.

First thing I asked about was the loss of sexual sensation and my doc suspected low testosterone. He then ordered a complete hormone panel and everything came back in range. My total testosterone was about 450, but my free was just barely over the within range point. Doc said this was fine and shouldn't cause the loss of sensation down there. He then referred me to a neurologist.

The neurologist suspected MS as a possibility for my symptoms. So first thing he ordered was an MRI of my head and spine. Both showed up fine. Then he had several blood tests done to rule out other things such as Lyme, syphilis, and B12. All came back fine.

Neurologist then ordered an eye test that tests for things like MS. I had that done and it came back normal.

My neurologist is now pretty confused and says he is not sure what to do now. He said he could try one more test called a spinal tap (lumbar puncture?) or he could try referring me to the Cleveland Clinic. He said he wasn't confident that the spinal tap would show anything because the MRI tests are about 99% accurate in diagnosing MS (his words, not mine). But he said it wouldn't hurt to check a spinal tap anyway.

I'm now really confused on what is wrong with me. I'm not sure if its even worth trying the spinal tap now. Is it worth trying?

The main symptom that has me down is the sexual sensation loss. I saw one other guy on this forum complain about a symptom similar to this, but I think he wasn't clearly diagnosed with MS either. I'm not sure what his progress is now since he hasn't been back in a few years. Anyone have experience with a symptom like this?

Anyway, I'd appreciate any advice on my situation. Thanks.

Welcome to ThisIsMS, Jobo.

As you may realize already, we are a community of unique individuals – each with our own unique set of experiences, our own unique set of symptoms, and our own unique set of ideas. Since your last sentence states, "I'd appreciate any advice on my situation," I feel free to post mine:

Since my latest focus is on vitamin B12 and you stated that your neurologist had ruled out a B12 deficiency, I am curious to know your actual test result numbers (According to the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O., the lab cutoffs for a deficiency are set too low in the US; the authors recommend 550 pg/mL as the cutoff.). Was only a serum B12 test performed, or was this confirmed by a serum homocysteine test and a serum or urinary methylmalonic acid test also? Your symptoms are shared by many conditions; your neurologist is right to rule out (or exclude) what he can – MS is a diagnosis of exclusion.

I do know that a B12 deficiency can cause uro-genital nerve damage (Could this be related to penis sensitivity?).

By the way, I encourage you to ask for and keep copies of all your test results – memory can fail us.

It is my understanding that the standard lab range is determined by adding two standard deviations to either side of the average of all the "sick" people having the test done. I have no medical background and if I am incorrect, I request to be corrected by my friends here at ThisIsMS.

As for your question of whether a spinal tap is worth trying… I think that is best decided between you and your doctor. But be aware that not everyone who is ultimately diagnosed with MS goes through a spinal tap (a.k.a. lumbar puncture). In my personal case, I have never had a spinal tap.
User avatar
lyndacarol
Family Elder
 
Posts: 2347
Joined: Thu Dec 22, 2005 3:00 pm

Re: I'm so confused. Could I have MS?

Postby want2bike » Mon Jul 14, 2014 11:44 am

You didn't give an indication to what your diet is but food is very important to healing any disease. Dr. Bergman gives a program for treating any autoimmune problem. After you have gotten all your test and they can't find anything you might give Dr. Bergman's program a try.

http://www.youtube.com/watch?v=zGmyUppmt-g
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am

Re: I'm so confused. Could I have MS?

Postby Jobo » Mon Jul 14, 2014 12:29 pm

lyndacarol wrote:
Jobo wrote:Hi everyone,

I'm a 23 year old guy and for the past year I have been having some problems with sensation on my entire body. My skin sensation almost feels slightly muted. It's not a tingling pins and needles type numbness. I can still feel pain. I also have fatigue, brain fog, mild depression and occasional dizzy spells (I've had these symptoms for a long time).

So this started about a year ago. It seemed to come all of a sudden. Like I noticed it one morning. The first thing I noticed was that my penis was not sensitive anymore. I compared the sensation on my penis to my lower stomach and it felt the same. It was like my whole body sensation was slightly muted. I was pretty worried so I made an appointment with a general practitioner.

First thing I asked about was the loss of sexual sensation and my doc suspected low testosterone. He then ordered a complete hormone panel and everything came back in range. My total testosterone was about 450, but my free was just barely over the within range point. Doc said this was fine and shouldn't cause the loss of sensation down there. He then referred me to a neurologist.

The neurologist suspected MS as a possibility for my symptoms. So first thing he ordered was an MRI of my head and spine. Both showed up fine. Then he had several blood tests done to rule out other things such as Lyme, syphilis, and B12. All came back fine.

Neurologist then ordered an eye test that tests for things like MS. I had that done and it came back normal.

My neurologist is now pretty confused and says he is not sure what to do now. He said he could try one more test called a spinal tap (lumbar puncture?) or he could try referring me to the Cleveland Clinic. He said he wasn't confident that the spinal tap would show anything because the MRI tests are about 99% accurate in diagnosing MS (his words, not mine). But he said it wouldn't hurt to check a spinal tap anyway.

I'm now really confused on what is wrong with me. I'm not sure if its even worth trying the spinal tap now. Is it worth trying?

The main symptom that has me down is the sexual sensation loss. I saw one other guy on this forum complain about a symptom similar to this, but I think he wasn't clearly diagnosed with MS either. I'm not sure what his progress is now since he hasn't been back in a few years. Anyone have experience with a symptom like this?

Anyway, I'd appreciate any advice on my situation. Thanks.

Welcome to ThisIsMS, Jobo.

As you may realize already, we are a community of unique individuals – each with our own unique set of experiences, our own unique set of symptoms, and our own unique set of ideas. Since your last sentence states, "I'd appreciate any advice on my situation," I feel free to post mine:

Since my latest focus is on vitamin B12 and you stated that your neurologist had ruled out a B12 deficiency, I am curious to know your actual test result numbers (According to the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and Jeffrey Stuart, D.O., the lab cutoffs for a deficiency are set too low in the US; the authors recommend 550 pg/mL as the cutoff.). Was only a serum B12 test performed, or was this confirmed by a serum homocysteine test and a serum or urinary methylmalonic acid test also? Your symptoms are shared by many conditions; your neurologist is right to rule out (or exclude) what he can – MS is a diagnosis of exclusion.

I do know that a B12 deficiency can cause uro-genital nerve damage (Could this be related to penis sensitivity?).

By the way, I encourage you to ask for and keep copies of all your test results – memory can fail us.

It is my understanding that the standard lab range is determined by adding two standard deviations to either side of the average of all the "sick" people having the test done. I have no medical background and if I am incorrect, I request to be corrected by my friends here at ThisIsMS.

As for your question of whether a spinal tap is worth trying… I think that is best decided between you and your doctor. But be aware that not everyone who is ultimately diagnosed with MS goes through a spinal tap (a.k.a. lumbar puncture). In my personal case, I have never had a spinal tap.


Thank you for the reply lyndacarol I really appreciate it.

Unfortunately I don't have my actual b12 test numbers. All I know is that my told me he tested for a B12 deficiency and my results were considered fine.

You mentioned something called homocysteine. That is something I'm curious about because around the time this began I was taking a supplement called SAM-e. I didn't take it very long, but after I had stopped taking it I read that B12 needed to be supplemented when taking SAM-e because without B12, the SAM-e can cause a build up of homocysteine. I didn't take B12 while I was taking the SAM-e. I don't know if that was worth mentioning, but it was something I was always curious about.

So if I did want to raise my B12 levels would taking a B12 supplement help? Or would a B12 shot be the better route? Or maybe I should wait until I get my result sheet from my doctor to see my levels for myself?

Also, about the spinal tap, have you heard of anyone getting diagnosed through a spinal tap when MRI tests have failed?
Jobo
Newbie
 
Posts: 4
Joined: Sat Jul 12, 2014 11:06 am

Re: I'm so confused. Could I have MS?

Postby euphoniaa » Mon Jul 14, 2014 1:57 pm

Jobo wrote:
My neurologist is now pretty confused and says he is not sure what to do now. He said he could try one more test called a spinal tap (lumbar puncture?) or he could try referring me to the Cleveland Clinic. He said he wasn't confident that the spinal tap would show anything because the MRI tests are about 99% accurate in diagnosing MS (his words, not mine). But he said it wouldn't hurt to check a spinal tap anyway.

I'm now really confused on what is wrong with me. I'm not sure if its even worth trying the spinal tap now. Is it worth trying?



Hi Jobo and welcome! Unfortunately, the spinal tap alone couldn't give you a definite MS diagnosis with no other positive test like lesions on MRI. And yes, the spinal tap CAN actually hurt! :smile:

I would definitely suggest that you go with the referral to the Cleveland Clinic. It's obvious there's something neurological going on, but most neuro problems have similar symptoms and the battery of tests is supposed to narrow down the options. Your doctor has done pretty much all the usual tests and says he's stumped -- so am I.

It's definitely worth following up. And I would wait until after the Cleveland Clinic visit to see if they still recommend a spinal tap (lumbar puncture), since it will only give clues, not a diagnosis. The MRIs of brain & C-spine are the best test and they show nothing in your case. My first MRIs showed a brain full of classic MS-type lesions even though I wasn't complaining of neuro symptoms at all. (see that story here: general-discussion-f1/topic16335.html )

Good luck and keep us posted how you're doing.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 700
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.

Re: I'm so confused. Could I have MS?

Postby lyndacarol » Mon Jul 14, 2014 3:34 pm

Unfortunately I don't have my actual b12 test numbers. All I know is that my told me he tested for a B12 deficiency and my results were considered fine.

You mentioned something called homocysteine. That is something I'm curious about because around the time this began I was taking a supplement called SAM-e. I didn't take it very long, but after I had stopped taking it I read that B12 needed to be supplemented when taking SAM-e because without B12, the SAM-e can cause a build up of homocysteine. I didn't take B12 while I was taking the SAM-e. I don't know if that was worth mentioning, but it was something I was always curious about.

So if I did want to raise my B12 levels would taking a B12 supplement help? Or would a B12 shot be the better route? Or maybe I should wait until I get my result sheet from my doctor to see my levels for myself?

Also, about the spinal tap, have you heard of anyone getting diagnosed through a spinal tap when MRI tests have failed?

I certainly don't have all the answers, Jobo; but I am glad to share what I know.

Too often doctors or office nurses simply say, "The test results were fine," when the actual numbers give a more refined picture – the numbers are on the high-end or the low end.

I think the fact that you were taking SAMe could be important and is worth mentioning to your doctor. Homocysteine is a toxic amino acid that damages the inside of blood vessel walls. Many scientists today consider a high homocysteine level to be a much better indicator of heart disease risk than cholesterol levels. Homocysteine (Hcy) is involved in methylation (methionine to Hcy/Hcy to methionine process). B12 allows another B vitamin (folic acid) to convert homocysteine into a non-toxic amino acid, methionine.

According to the book, Could It Be B12? (page 95-96),

Your body breaks down methionine into smaller particles, one of which is a molecule called SAMe. SAMe, in turn, breaks down into smaller substances, one of which is homocysteine. When everything's working right, this homocysteine quickly gets recycled back into methionine with the help of vitamin B12 and folic acid,…

I think it is wise to know your B12 level test result before you try supplementation. Vitamin B12 is water soluble and there is no problem with toxicity, side effects, or expense. If you take in more than your body needs, the excess is flushed out in urine. However, taking a supplement will skew the test results, if your doctor is going to do more testing to confirm a deficiency.

Food sources of B12 are all animal-based (meat, poultry, fish, dairy, eggs). B12 (a.k.a. cobalamin) supplements are available as a sublingual tablet – usually methylcobalamin. The authors of Could It Be B12? think that injections of methylcobalamin are better, but in the US the B12 injections given in doctors' offices are usually cyanocobalamin, which is not as bioavailable as methyl. (However, methyl B12 is available through a compounding pharmacy for self-administration, as diabetics do with insulin.)

I cannot answer your question about anyone being diagnosed through a spinal tap if the MRI is normal. Perhaps others here have had the experience.
User avatar
lyndacarol
Family Elder
 
Posts: 2347
Joined: Thu Dec 22, 2005 3:00 pm

Re: I'm so confused. Could I have MS?

Postby Jobo » Mon Jul 14, 2014 5:57 pm

euphoniaa wrote:
Jobo wrote:
My neurologist is now pretty confused and says he is not sure what to do now. He said he could try one more test called a spinal tap (lumbar puncture?) or he could try referring me to the Cleveland Clinic. He said he wasn't confident that the spinal tap would show anything because the MRI tests are about 99% accurate in diagnosing MS (his words, not mine). But he said it wouldn't hurt to check a spinal tap anyway.

I'm now really confused on what is wrong with me. I'm not sure if its even worth trying the spinal tap now. Is it worth trying?



Hi Jobo and welcome! Unfortunately, the spinal tap alone couldn't give you a definite MS diagnosis with no other positive test like lesions on MRI. And yes, the spinal tap CAN actually hurt! :smile:

I would definitely suggest that you go with the referral to the Cleveland Clinic. It's obvious there's something neurological going on, but most neuro problems have similar symptoms and the battery of tests is supposed to narrow down the options. Your doctor has done pretty much all the usual tests and says he's stumped -- so am I.

It's definitely worth following up. And I would wait until after the Cleveland Clinic visit to see if they still recommend a spinal tap (lumbar puncture), since it will only give clues, not a diagnosis. The MRIs of brain & C-spine are the best test and they show nothing in your case. My first MRIs showed a brain full of classic MS-type lesions even though I wasn't complaining of neuro symptoms at all. (see that story here: general-discussion-f1/topic16335.html )

Good luck and keep us posted how you're doing.


Thanks for the reply euphoniaa.

You're right saying that a spinal tap can hurt. I remember I asked my neurologist if their were any risks to having a spinal tap and he said there's always a risk for infection, but its a low risk. He failed to mention some of the other risks and side effects. I found those out myself after researching. But he seems to think that a spinal tap would be a good idea and he assured me that I had nothing to worry about because he would be doing it himself. I can still take the option for the Cleveland Clinic and I'm thinking I might take it instead.

I wonder if maybe he thinks something else might show up on the spinal tap? I'm not sure.

Thanks for the input euphoniaa.
Jobo
Newbie
 
Posts: 4
Joined: Sat Jul 12, 2014 11:06 am

Re: I'm so confused. Could I have MS?

Postby Jobo » Mon Jul 14, 2014 6:11 pm

lyndacarol wrote:
Unfortunately I don't have my actual b12 test numbers. All I know is that my told me he tested for a B12 deficiency and my results were considered fine.

You mentioned something called homocysteine. That is something I'm curious about because around the time this began I was taking a supplement called SAM-e. I didn't take it very long, but after I had stopped taking it I read that B12 needed to be supplemented when taking SAM-e because without B12, the SAM-e can cause a build up of homocysteine. I didn't take B12 while I was taking the SAM-e. I don't know if that was worth mentioning, but it was something I was always curious about.

So if I did want to raise my B12 levels would taking a B12 supplement help? Or would a B12 shot be the better route? Or maybe I should wait until I get my result sheet from my doctor to see my levels for myself?

Also, about the spinal tap, have you heard of anyone getting diagnosed through a spinal tap when MRI tests have failed?

I certainly don't have all the answers, Jobo; but I am glad to share what I know.

Too often doctors or office nurses simply say, "The test results were fine," when the actual numbers give a more refined picture – the numbers are on the high-end or the low end.

I think the fact that you were taking SAMe could be important and is worth mentioning to your doctor. Homocysteine is a toxic amino acid that damages the inside of blood vessel walls. Many scientists today consider a high homocysteine level to be a much better indicator of heart disease risk than cholesterol levels. Homocysteine (Hcy) is involved in methylation (methionine to Hcy/Hcy to methionine process). B12 allows another B vitamin (folic acid) to convert homocysteine into a non-toxic amino acid, methionine.

According to the book, Could It Be B12? (page 95-96),

Your body breaks down methionine into smaller particles, one of which is a molecule called SAMe. SAMe, in turn, breaks down into smaller substances, one of which is homocysteine. When everything's working right, this homocysteine quickly gets recycled back into methionine with the help of vitamin B12 and folic acid,…

I think it is wise to know your B12 level test result before you try supplementation. Vitamin B12 is water soluble and there is no problem with toxicity, side effects, or expense. If you take in more than your body needs, the excess is flushed out in urine. However, taking a supplement will skew the test results, if your doctor is going to do more testing to confirm a deficiency.

Food sources of B12 are all animal-based (meat, poultry, fish, dairy, eggs). B12 (a.k.a. cobalamin) supplements are available as a sublingual tablet – usually methylcobalamin. The authors of Could It Be B12? think that injections of methylcobalamin are better, but in the US the B12 injections given in doctors' offices are usually cyanocobalamin, which is not as bioavailable as methyl. (However, methyl B12 is available through a compounding pharmacy for self-administration, as diabetics do with insulin.)

I cannot answer your question about anyone being diagnosed through a spinal tap if the MRI is normal. Perhaps others here have had the experience.


Yes, I agree that doctors like to say that some test results are fine as long as they are in reference range. Like my testosterone levels are 450 on a reference range of 380-1200. Doctors get these reference ranges by testing healthy men in their 20s AND in men all the way up in their 80s then say everything within their levels are normal. So I got within reference range, but I probably have the testosterone level of a 70 year old man! Now, I don't think that's whats causing my sensitivity problem down there, but its still not an ideal testosterone level for a man my age.

I'm going to try supplementing B12 for a while and see if my symptoms improve at all. I ordered some methyl-B12 because I read that's better absorbed. I don't think my doctor is going to test B12 again because I know he probably feels its fine.
Jobo
Newbie
 
Posts: 4
Joined: Sat Jul 12, 2014 11:06 am

Re: I'm so confused. Could I have MS?

Postby euphoniaa » Mon Jul 14, 2014 6:37 pm

Jobo wrote:
Thanks for the reply euphoniaa.

You're right saying that a spinal tap can hurt. I remember I asked my neurologist if their were any risks to having a spinal tap and he said there's always a risk for infection, but its a low risk. He failed to mention some of the other risks and side effects. I found those out myself after researching. But he seems to think that a spinal tap would be a good idea and he assured me that I had nothing to worry about because he would be doing it himself. I can still take the option for the Cleveland Clinic and I'm thinking I might take it instead.

I wonder if maybe he thinks something else might show up on the spinal tap? I'm not sure.

Thanks for the input euphoniaa.

Hi again, Mayo Clinic lists other issues that a spinal tap may "help to diagnose", so it's your call whether you want one now or want to wait. Here's the link to the Mayo Clinic page (one of my favorite sites) and a quote:
http://www.mayoclinic.org/tests-procedu ... c-20012679

Why it's done
By Mayo Clinic Staff

Lumbar puncture may be done to:
•Collect cerebrospinal fluid for laboratory analysis
•Measure the pressure of your cerebrospinal fluid
•Inject spinal anesthetics, chemotherapy drugs or other medications
•Inject dye (myelography) or radioactive substances (cisternography) into cerebrospinal fluid to make diagnostic images of the fluid's flow

Information gathered from a lumbar puncture can help diagnose:
•Serious bacterial, fungal and viral infections, including meningitis, encephalitis and syphilis
•Bleeding around the brain (subarachnoid hemorrhage)
•Certain cancers involving the brain or spinal cord
•Certain inflammatory conditions of the nervous system, such as multiple sclerosis and Guillain-Barre syndrome


By the way, I had no trouble with after effects from my lumbar puncture aside from the pain of the needle. They told me that the nasty headache is from the way the procedure is done, and it's not necessary to lie flat for hours afterwards, etc., so I didn't and I was fine. And Mayo Clinic agrees - they say you can return to work if it's not strenuous activity: http://www.mayoclinic.org/tests-procedu ... c-20012679

But... I have had problems with supplementing Vit B12 & Vit D!!!!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Volunteer Moderator
 
Posts: 700
Joined: Sat Jul 15, 2006 2:00 pm
Location: midwest U.S.


Return to Undiagnosed

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service