Hi y'all,
I've bee debating writing on here but I decided that it would be a good idea to hear from some others. I've been experiencing MS symptoms for almost 4 years now. Initially started out as back pain, pain in legs, and vertigo. Then the numbing, tingling, some balance issues. I was tested a few years ago, inconclusive, but since then have had more flare ups and some with new symptoms. Also had a CT scan last year but it revealed something in my brain that hadn't been there prior (I'm not entirely sure because it was an out of state ER visit so I never followed up). Some days are good, some not so good.
I've been told to go see a neurologists again seeing that symptoms have returned with new ones this time (the usual numbing, pins & needles feeling, crawling sensations, dizziness, stiffness, burning and sharp pain in legs, extreme itchiness, urinary urgency/hesitation, heat intolerance, and eye pain). But to be honest, I am so hesitant. I'm worried I'll go to the neuro an yet again they'll have no idea what's wrong or tests will come back ok. I had one neruo tell me that these things were "normal" which made me feel so crazy because I didn't understand how what I was experiencing was normal . . .especially because I know what my typical baseline of "normal functioning" is and this isn't it. On the outside looking in I'm "fine" but whatever is going on is so upsetting to me. I remember a time when I wasn't like this and it's just so frustrating. I'm worried they'll write me off as just being "too stressed" or that it's just "all in my head." I've been avoiding scheduling an appointment out of fear that they will just tell me "I'm too young for this to happen to" (which has happened before) or that I'm just making all of this up.
Has anyone else experienced this fear that a doctor wouldn't believe them or just tell them it's all psychological/in your head or not being taken seriously etc?
Thanks, y'all, for listening!
25 year old scared and lost
Re: 25 year old scared and lost
Welcome to ThisIsMS. Have you ever had an MRI of the brain and cervical spine with and without contrast? That's a standard diagnostic procedure for MS. In addition, have you had any blood tests done? If so, which ones?mountaingirl53 wrote:I've bee debating writing on here but I decided that it would be a good idea to hear from some others. I've been experiencing MS symptoms for almost 4 years now. Initially started out as back pain, pain in legs, and vertigo. Then the numbing, tingling, some balance issues. I was tested a few years ago, inconclusive, but since then have had more flare ups and some with new symptoms. Also had a CT scan last year but it revealed something in my brain that hadn't been there prior (I'm not entirely sure because it was an out of state ER visit so I never followed up). Some days are good, some not so good.
Re: 25 year old scared and lost
hello and welcome to the site! can you share any info on health background before aside from the symptoms listed, general diet and lifestyle, typical activity level, whether you've noticed any pattern to when symptoms are worse? there could be some action you can take on your own, while working through the process with the docs.
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Re: 25 year old scared and lost
Hi,
Your concern that the doctors will brush you aside is completely reasonable. If they do that then seek another neurologist and perhaps a new GP. It is a very common experience to be told your fine when you know you are not.
If your medical advisors are any good they should do an MRI and they should do a raft of blood tests to check for infections or aberrant measurements.
Not going to see someone won't get those tests done. If you feel you've been rejected without a proper reason then change doctors but see the people you have been advised to see first.
We all have stories about being told there is nothing wrong.
Regards,
Your concern that the doctors will brush you aside is completely reasonable. If they do that then seek another neurologist and perhaps a new GP. It is a very common experience to be told your fine when you know you are not.
If your medical advisors are any good they should do an MRI and they should do a raft of blood tests to check for infections or aberrant measurements.
Not going to see someone won't get those tests done. If you feel you've been rejected without a proper reason then change doctors but see the people you have been advised to see first.
We all have stories about being told there is nothing wrong.
Regards,
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mountaingirl53
- Newbie
- Posts: 2
- Joined: Thu Jan 12, 2017 5:26 am
Re: 25 year old scared and lost
Thank you so much for responding y'all!
@NHE - Yes, I had MRI's (without contrast) done a little over 2 years ago. All they said was it was inconclusive. So I just dealt with the symptoms and eventually some passed with a bit of annoyances from others and then a full blown flare up about 6 months later. And yes, I've had SO many blood tests and routinely have bloodwork done every few months. I've gotten tested for full CBC, electrolytes and all that, and some immune stuff (AsO titers, checked for infections, and such). Everything comes back good and in range. No vitamin B12 def ...it's in the 800-900 range. The only thing that comes back just a tad low is Vitamin D (only 25).
@jimmylegs - I have a good diet. I eat mainly a wholesome plant based diet (occasionally eggs and cheese). I stay away from processed foods and fried foods. I drink tea, water, and coffee (not much). I have no food allergies. I'm very active and always have been. I'm a soccer player, I run, hike, and do yoga (although it's been rough lately due to symptoms). I've noticed more recently within the last year or so that some of my symptoms get worse. I particularly took notice to this one soccer game last year. I started getting numbing and tingling, was fatigued and had blurry vision. I decided to stay in the game and I ended up colliding with a girl as a result and the sensations continued on...I couldn't feel the lower half of my body, almost felt shock like. That's when I got a CT scan (last year) and I got a call from my student health center saying they found something that I should follow up with a neuro about. I freaked and didn't follow through and because my last encounter with a neuro wasn't all that great. I didn't want to have to go through all that testing yet again.
Some symptoms get worse with heat and exercise (fatigue, sometimes blurry vision, pins&needles, weakness, urinary issues) and others get worse when it's cold (stiffness and weakness). Other times I'm ok. I notice my symptoms haven't appeared and I feel good!! That's what makes it so hard to explain to people...how I'll be ok for a period of time and then I have a flare up of sorts. Other that that I'm a student. Thankfully I am in classes online . . . makes it easier with all of this going on.
@Scott1 I took the initiative and I set up an appointment with a different neurologist who has a specialty in MS. Mainly this change in neuro was because I moved but I finally took that step today and scheduled an appt for Feb 20th. Not too bad of a wait considering it can take way longer to get in. So just need to take it day by day.
Thank you all again for your responses. Best wishes!!
@NHE - Yes, I had MRI's (without contrast) done a little over 2 years ago. All they said was it was inconclusive. So I just dealt with the symptoms and eventually some passed with a bit of annoyances from others and then a full blown flare up about 6 months later. And yes, I've had SO many blood tests and routinely have bloodwork done every few months. I've gotten tested for full CBC, electrolytes and all that, and some immune stuff (AsO titers, checked for infections, and such). Everything comes back good and in range. No vitamin B12 def ...it's in the 800-900 range. The only thing that comes back just a tad low is Vitamin D (only 25).
@jimmylegs - I have a good diet. I eat mainly a wholesome plant based diet (occasionally eggs and cheese). I stay away from processed foods and fried foods. I drink tea, water, and coffee (not much). I have no food allergies. I'm very active and always have been. I'm a soccer player, I run, hike, and do yoga (although it's been rough lately due to symptoms). I've noticed more recently within the last year or so that some of my symptoms get worse. I particularly took notice to this one soccer game last year. I started getting numbing and tingling, was fatigued and had blurry vision. I decided to stay in the game and I ended up colliding with a girl as a result and the sensations continued on...I couldn't feel the lower half of my body, almost felt shock like. That's when I got a CT scan (last year) and I got a call from my student health center saying they found something that I should follow up with a neuro about. I freaked and didn't follow through and because my last encounter with a neuro wasn't all that great. I didn't want to have to go through all that testing yet again.
Some symptoms get worse with heat and exercise (fatigue, sometimes blurry vision, pins&needles, weakness, urinary issues) and others get worse when it's cold (stiffness and weakness). Other times I'm ok. I notice my symptoms haven't appeared and I feel good!! That's what makes it so hard to explain to people...how I'll be ok for a period of time and then I have a flare up of sorts. Other that that I'm a student. Thankfully I am in classes online . . . makes it easier with all of this going on.
@Scott1 I took the initiative and I set up an appointment with a different neurologist who has a specialty in MS. Mainly this change in neuro was because I moved but I finally took that step today and scheduled an appt for Feb 20th. Not too bad of a wait considering it can take way longer to get in. So just need to take it day by day.
Thank you all again for your responses. Best wishes!!
Re: 25 year old scared and lost
ok that is excellent information 
without careful attention to detail, a plant based diet is not likely to provide daily requirements for zinc. zinc is a micronutrient which is often low in ms patients and for that matter, in many other chronic diseases.
vegetarians can require an additional 30% over and above general requirements for dietary zinc, to account for poor bioavailability of non-animal sources. low zinc interferes with the body's ability to digest foods properly, and neutralize toxic byproducts specifically ammonia. the evidence can be seen in low serum uric acid (in ms patients, around 194 is average while healthy ppl have serum Ua ~300 umol/L. 'normal' range for serum uric acid is 140-360 umol/L)
active individuals can also require higher inputs of essential macro and micronutrients.
good to hear that you have no food allergies; that piece does speak to a zinc status that isn't *too* too bad. there may still be significant room for improvement. especially when you consider the influence of a plant based diet on copper zinc ratios, as well as on the aforementioned serum uric acid situation.
arg i can relate to losing function while being active, no fun. in my case, it was definitely a b12 thing going on so good to see that does not seem to apply in your case.
you will likely also do well to have a look at your magnesium status if you can, and ensure it's in the top end of the 'normal' range. if not with a blood test, by reviewing diet (including fluids) and being aware that active ppl require more than the basic daily requirements for average joe.
magnesium is required to maintain circulating 25(OH)vitamin D3 in the blood; if you take people with exactly the same exposure to D3 from sunshine and diet, the ones with more magnesium in diet will have higher circulating levels of vit d3.
i'm assuming you've had serum ferritin done as well? that is pretty standard and as a vegetarian, your docs are likely keeping an eye on it. do you happen to have a level on file?
without careful attention to detail, a plant based diet is not likely to provide daily requirements for zinc. zinc is a micronutrient which is often low in ms patients and for that matter, in many other chronic diseases.
vegetarians can require an additional 30% over and above general requirements for dietary zinc, to account for poor bioavailability of non-animal sources. low zinc interferes with the body's ability to digest foods properly, and neutralize toxic byproducts specifically ammonia. the evidence can be seen in low serum uric acid (in ms patients, around 194 is average while healthy ppl have serum Ua ~300 umol/L. 'normal' range for serum uric acid is 140-360 umol/L)
active individuals can also require higher inputs of essential macro and micronutrients.
good to hear that you have no food allergies; that piece does speak to a zinc status that isn't *too* too bad. there may still be significant room for improvement. especially when you consider the influence of a plant based diet on copper zinc ratios, as well as on the aforementioned serum uric acid situation.
arg i can relate to losing function while being active, no fun. in my case, it was definitely a b12 thing going on so good to see that does not seem to apply in your case.
you will likely also do well to have a look at your magnesium status if you can, and ensure it's in the top end of the 'normal' range. if not with a blood test, by reviewing diet (including fluids) and being aware that active ppl require more than the basic daily requirements for average joe.
magnesium is required to maintain circulating 25(OH)vitamin D3 in the blood; if you take people with exactly the same exposure to D3 from sunshine and diet, the ones with more magnesium in diet will have higher circulating levels of vit d3.
i'm assuming you've had serum ferritin done as well? that is pretty standard and as a vegetarian, your docs are likely keeping an eye on it. do you happen to have a level on file?
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use the report button to flag problematic post content to volunteer moderators' attention.
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centenarian100
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Re: 25 year old scared and lost
moutaingirl: Best of luck with your upcoming appointment. I understand you frustration, but let me remind you that being diagnosed with a serious neurological disease such as multiple sclerosis is MUCH MUCH WORSE than having unexplained bothersome symptoms. I pray that your new doctor concludes that you do not have MS or any other serious underlying chronic condition. Unfortunately, nothing magical happens when you get a diagnosis like MS. The satisfaction of having an explanation is overshadowed by the pragmatic reality of having a disease.