What were your first symptoms....

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

What were your first symptoms....

Postby Kpots78 » Wed Nov 06, 2013 9:52 am

I'm just curious what symptoms others started with initially.

My name is Kelly and I am a 35 yr old female.
After seeing my doctor for the last 2 days she has decided that I need an MRI and neurologist referral. When she stated that she thought it was quite possible I may have MS I was surprised as I had never really heard much about it before and didn't have a lot of knowledge on the disease.

I woke up on Saturday morning with the left side of my face numb and tingly. I wasn't concerned as I had experienced this a few times a year over the last 5 years or so. But when I woke on Sunday it was still there and normally it would go away after a day. The first time I experienced this I was pregnant and the doctor said that it was just a form of Bells Palsy you can get while pregnant. And over the years after having my daughter I just ignored it. I have been experiencing headaches/migraines on and off for the last 3 years which are getting very frequent within the last year. I have been to my doctor about 10x for neck/back pain and have been to physio which has not done anything. I have been experiencing numb tingly toes on and off for the last few years (just always thought it was from being cold) I have noticed my eyesight in my left eye has become very poor. Sometimes doubled or spotty but just not normal. On sunday my left fingers are tingly and my arm gets tingly on and off. I have trouble holding things with my left arm, if I do it gets tingly and feels super prickly. I've noticed in the last couple of days that my lips feel numb and tingly too. I have been feeling very lightheaded. I had so much trouble getting up for work this morning. Its so weird it just seems like everything is coming on so fast right now and I am not sure what to think or expect. I have no diagnoses and like I said I never suspected to hear it could be MS. I laid there last night thinking about this and have found that there has been quite a few things over the last 10 yrs or so that make some sense now.

I am just looking for some input and how others have come to their docs decision to test for MS.

Thanks :-D
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Re: What were your first symptoms....

Postby Trisha2021 » Fri Nov 08, 2013 2:23 pm

Hi, my first sign was my whole left side of my body going numb , on and off. I never looked up a dr I just thought it was a pinched nerve . I let it go about 1 month and looked up a massage therapist and it went away! Six months ago I had my second relapse, I was having a horrible pain in my left eye. So I go see my eye dr. Who tells me it's only sinuses . After a week , hardly able to see go back to see him and he is still telling me the same . After me explaining to him that I've been dealing with sinus issues my whole life and that I've never lost my eye site , he asked me if I would like to see a specialist ?!? Hell Yes !!!! I can't see obviously something is wrong with me , I am only 28. So I go to see him and he knew it right away and ordered an MRI for me and I got an appointment ASAP with the stupidest neurologist I've ever met !!! Thank god I'm seeing an MS specialist that I love and works with me and I can talk to... I wish you good luck!
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Re: What were your first symptoms....

Postby lyndacarol » Fri Nov 08, 2013 6:26 pm

Kpots78 wrote:I'm just curious what symptoms others started with initially.

My name is Kelly and I am a 35 yr old female.
After seeing my doctor for the last 2 days she has decided that I need an MRI and neurologist referral. When she stated that she thought it was quite possible I may have MS I was surprised as I had never really heard much about it before and didn't have a lot of knowledge on the disease.

I woke up on Saturday morning with the left side of my face numb and tingly. I wasn't concerned as I had experienced this a few times a year over the last 5 years or so. But when I woke on Sunday it was still there and normally it would go away after a day. The first time I experienced this I was pregnant and the doctor said that it was just a form of Bells Palsy you can get while pregnant. And over the years after having my daughter I just ignored it. I have been experiencing headaches/migraines on and off for the last 3 years which are getting very frequent within the last year. I have been to my doctor about 10x for neck/back pain and have been to physio which has not done anything. I have been experiencing numb tingly toes on and off for the last few years (just always thought it was from being cold) I have noticed my eyesight in my left eye has become very poor. Sometimes doubled or spotty but just not normal. On sunday my left fingers are tingly and my arm gets tingly on and off. I have trouble holding things with my left arm, if I do it gets tingly and feels super prickly. I've noticed in the last couple of days that my lips feel numb and tingly too. I have been feeling very lightheaded. I had so much trouble getting up for work this morning. Its so weird it just seems like everything is coming on so fast right now and I am not sure what to think or expect. I have no diagnoses and like I said I never suspected to hear it could be MS. I laid there last night thinking about this and have found that there has been quite a few things over the last 10 yrs or so that make some sense now.

I am just looking for some input and how others have come to their docs decision to test for MS.

Thanks :-D


Welcome to ThisIsMS, Kelly. My MS symptoms started with tingly feet, which is known as peripheral neuropathy. Then I had the feeling of a constricting band around my left upper arm. Then, for a couple months I had trigeminal neuralgia in my face. During these symptoms, my first three MRIs were normal. Only on the fourth MRI did lesions appear. However, I was first misdiagnosed with a herniated cervical disc and had unnecessary surgery, which brought me no relief. After time and several neurologists, I was diagnosed with MS.

Since you described numb, tingling toes and tingling fingers and prickly arm, I suggest you start with the following areas, as suggested by the University of Chicago:

http://peripheralneuropathycenter.uchic ... #bloodtest

Especially important is this section on blood tests:

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 (Jimmylegs, here at TIMS, recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also; pregnant women produce excess insulin – your facial tingling and numbness first appeared with your pregnancy.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think this is VERY important, as well as a mannitol-lactulose test for Intestinal Permeability.)
Lyme disease (Bartman, among other TIMS members, urge this testing.)
HIV/AIDS
Hepatitis C and B

MS is a diagnosis of exclusion – other possibilities are ruled out first. We wish you all the best.
Last edited by lyndacarol on Fri Nov 22, 2013 8:51 am, edited 1 time in total.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: What were your first symptoms....

Postby KristaM » Thu Nov 21, 2013 1:15 pm

Kpots78-I am having almost those exact same symptoms and just got bloodwork done to rule out vitamin deficiency. If my test comes back clear, I will be having an MRI and will be seen by a neurologist, as my doctor to suspects MS. It's super scary. I'm 33 years old and have been having problems for a year but in the last month this have gotten worse. Keep us posted as to what happens at your appointments.
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Re: What were your first symptoms....

Postby Kpots78 » Thu Nov 21, 2013 6:23 pm

Thanks for the replies.

KristaM....I have my MRI on Dec 4th. In the meantime I am waiting to see a neurologist. Some of the symptoms have subsided but others have come about. I have alot of nerve pain. spasticity I think it is called. my doc has me currently on naproxen and lyrica. My blood work came back and my iron levels are very low so I am taking faremax supplement. My iron has never been low so not sure what that is about. I will keep u posted as to how my mri turns out. But sometimes you just have that gut feeling. Please keep me posted on your results as well :) stay strong.
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Re: What were your first symptoms....

Postby lyndacarol » Fri Nov 22, 2013 8:38 am

Kpots78 wrote:Thanks for the replies.

KristaM....I have my MRI on Dec 4th. In the meantime I am waiting to see a neurologist. Some of the symptoms have subsided but others have come about. I have alot of nerve pain. spasticity I think it is called. my doc has me currently on naproxen and lyrica. My blood work came back and my iron levels are very low so I am taking faremax supplement. My iron has never been low so not sure what that is about. I will keep u posted as to how my mri turns out. But sometimes you just have that gut feeling. Please keep me posted on your results as well :) stay strong.

Kelly, please note that in the blood tests suggested by the University of Chicago as part of the neuro exam (in my previous posting above), testing for celiac disease should be done.

In Part 2 of the following video, Dr. Gary Kaplan, D.O., explains that iron deficiency/anemia is a common symptom of the Atypical/Extraintestinal form of celiac disease. Since the New England Journal of Medicine has stated that celiac disease is one of the most common lifelong diseases in Europe and the US, it seems logical to ask your neurologist (or GP) to rule out this possibility.

http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo
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Re: What were your first symptoms....

Postby zjac020 » Fri Jan 10, 2014 3:44 pm

I was born and raised in London until the age of 23 and then moved to Spain (I now 33)

Problem is lots of people may have gluten/wheat intolerance but not celiac disease. I had the first basic blood test for celiac...it came back negative and since I explained that I had cut out wheat and milk due to my CIS of MS (and not due to any obvious allergic reactions) but that I had noticed definite improvements to my digestion...he said it wasn't celiac and no more tests where necessary. Ironically the nutritionists don't value food intolerance tests which in my case showed high intolerance to wheat and all types of dairy...go figure.
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