Need answers

[Sammz]

Hi everyone. I just joined this forum because I really need info from people who already have been diagnosed with ms.
I am a 19 year old female in college. For the past three months I have had a lot of scary health issues. I've been to countless doctors and nothing has been resolved yet. Hopefully some of you have had a story like mine and can help. It started in the spring time.. I had dizziness and my vision was kinda blurry. I was also tired a lot. I wasn't too concerned with these symptoms because it was towards the end of my semester and I was stressed out. Fast forwArd to the middle of June and WHAM out of no where I had TONS of problems. I was sitting in my summer class and it was kinda hot and I began to get super dizzy, and I mean really dizzy to the point where I thought I would throw up. I immediately left the class room and went to my apartment. The dizziness continued for a couple days and I saw my PCP. She dismissed it as "inner ear viral infection." I didn't think that was it but I took the diagnoses and went home. Next symptom was terrible brain fog. I'm an engineering student so this was and has been by far the worst symptom. Sometimes it would be so bad I thought I was losing my mind. This has gotten a little better over the last 3 months but occasionally I will experience it. Next symptom: tingling and numbness. My first 'tingling' experience happened as I was walking out of my summer Calc class. It was like a shooting electrical shock up and down my calf. It was incredibly scary so I went to the er and they wrote it off as nothing. Shortly after my left foot began to feel a little numb, not full on numbness but it felt different than the rest of my body. This would happen off and on. Occasionally I would get pin-like feelings in my left leg. My mom and I were convinced this was ms. Numbness, tingling, dizziness, brain fog, tired all the time.... Next step was MRI. Showed NO lesions. I got the MRI a month ago and I am still having these problems. Some have gotten worse and some are better. Last friday I went to the er again because my right eye was very very blurry, saw black shapes in my field of vision, and saw shooting lines as well. I know there is something going on with me because 6 months ago I was a perfectly health 19 year old. Now I am a wreck. I know sometimes mris don't show lesions but I would just like some input from some of you to see if anyone can help. My doctor has been quite difficult. I am convinced that i have some sort of autoimmune disease and I have accept that. I would just like to know what I am dealing with so I can know what to expect in the future. So my main question is this: do my symptoms sound like the start of ms? And also did anyone on this forum experience the same situation but have NO lesions on first MRI???
Thank you so much
Sam

[Sammz]

I have other symptoms and more things to explain about doctors visits but I didn't want to write a super long post.
Thanks

[lyndacarol]

I am a 19 year old female in college. For the past three months I have had a lot of scary health issues. I've been to countless doctors and nothing has been resolved yet. Hopefully some of you have had a story like mine and can help. It started in the spring time.. I had dizziness and my vision was kinda blurry. I was also tired a lot. I wasn't too concerned with these symptoms because it was towards the end of my semester and I was stressed out. Fast forwArd to the middle of June and WHAM out of no where I had TONS of problems. I was sitting in my summer class and it was kinda hot and I began to get super dizzy, and I mean really dizzy to the point where I thought I would throw up. I immediately left the class room and went to my apartment. The dizziness continued for a couple days and I saw my PCP. She dismissed it as "inner ear viral infection." I didn't think that was it but I took the diagnoses and went home. Next symptom was terrible brain fog. I'm an engineering student so this was and has been by far the worst symptom. Sometimes it would be so bad I thought I was losing my mind. This has gotten a little better over the last 3 months but occasionally I will experience it. Next symptom: tingling and numbness. My first 'tingling' experience happened as I was walking out of my summer Calc class. It was like a shooting electrical shock up and down my calf. It was incredibly scary so I went to the er and they wrote it off as nothing. Shortly after my left foot began to feel a little numb, not full on numbness but it felt different than the rest of my body. This would happen off and on. Occasionally I would get pin-like feelings in my left leg. My mom and I were convinced this was ms. Numbness, tingling, dizziness, brain fog, tired all the time.... Next step was MRI. Showed NO lesions. I got the MRI a month ago and I am still having these problems. Some have gotten worse and some are better. Last friday I went to the er again because my right eye was very very blurry, saw black shapes in my field of vision, and saw shooting lines as well. I know there is something going on with me because 6 months ago I was a perfectly health 19 year old. Now I am a wreck. I know sometimes mris don't show lesions but I would just like some input from some of you to see if anyone can help. My doctor has been quite difficult. I am convinced that i have some sort of autoimmune disease and I have accept that. I would just like to know what I am dealing with so I can know what to expect in the future. So my main question is this: do my symptoms sound like the start of ms? And also did anyone on this forum experience the same situation but have NO lesions on first MRI???

Welcome to ThisIsMS, Sam (Sammz). My comments may not answer your direct questions about MS, but I hope you are open to any thoughts.

Your symptoms are common to many conditions. MS is just one possibility, but MS is a diagnosis of exclusion and can be made only after other more likely possibilities have been ruled out. The tingling and numbness in your extremities (feet/legs) is called "peripheral neuropathy," the University of Chicago suggests the following investigation of this symptom:

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

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

Starting with the first entry in the list, I encourage you to consider thorough screening for a possible vitamin B12 deficiency. This screening should include #1 the serum B12 test (or the newer, more reliable HoloTc test, which may not yet be available in your area), #2 the RBC folate test, #3 the serum homocysteine test, and #4 a methylmalonic acid test. (These initial tests for B12 deficiency are MUCH less expensive than the neurological tests for MS.) The serum B12 test alone is often not adequate to detect a deficiency.

Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"



I also recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

If you are ultimately diagnosed with MS, be aware that every patient diagnosed with MS has a unique set of symptoms. (By the way, I had no lesions on my first 3 MRIs. Lesions appeared on my fourth – 2 years after symptoms began.) We wish you all the best, please let us know how it goes with you.

[Sammz]

Hello thanks for the response. I should have mentioned all the blood work I have had done. B12- my b12 is slightly high. I've had my b12 check three times and it has stayed high. Tested for thyroid problems-t4&t3 also tsh: all normal. Liver and kidney function: normal. Hormone levels: all Normal. Cbc: normal. This week I am going to my doctor to have her write orders for ANA testing for celiac, lupus as well as Lyme disease.
I also had an emg done on my lower left leg that was normal. Cervical spine MRI showed 'straightening of spine.' Not sure what that means.
Other symptoms:
Difficult to breathe and my chest sometimes hurts.
Sometimes I have hand numbness, this has happened a few times.
Difficult to open mouth and get words out. Unsure if this is related to ms or not but this is a concerning symptom. My jaw hurts as well.
Pressure behind right eye and about right eye. I thought this was sinus related but I've been to my ent twice and he said that my sinuses are fine.
Toes on my right foot curl down when walking and sometimes my right foot will hurt. Again I'm unsure if this could be ms related.
Numb sensation in my right calf.
Walking outside in heat makes me EXTREMELY dizzy as well as sitting in a hot class room. The heat brings on dizziness and brain fog.
One last thing: my right eye is very sensitive to light. Optermologost called it iritis.
This is pretty much all of the symptoms I am currently having randomly.
I have seen: ENT, normal evaualtion, neurologist, allergist, er twice, PCP a TON. None of my doctors are able to tell me what it is.
Thank you

[David1949]

By way of introduction, I am also an engineer. I was dxed with MS 19 years ago at age 47. I have the primary progressive type of MS. My symptoms were different than yours.

First of all I would suggest that you don't start hoping for an MS diagnosis, just to have a diagnosis. MS is a nasty disease. You don't want it.

There is one other test that could be done to see if it's MS. That is a spinal tap. If you have MS you would probably have antibodies in the spinal fluid that aren't normally found there. It is a somewhat unpleasant test as they have to stick a needle in your spine, but it might give you a better idea of whether you have MS or not.

It is possible that you have CIS. That might or might not develop into MS. You can read about it here.
http://www.nationalmssociety.org/Sympto ... -%28CIS%29

Hope that helps. Good luck to you. I'll pray that it's not MS and that whatever it is resolves itself soon.

[lyndacarol]

I should have mentioned all the blood work I have had done. B12- my b12 is slightly high. ...

Cbc: normal.

It is a good idea to ask for copies of all your test results. The actual numbers are important – "normal" or "fine" are not really useful markers. The numbers can be high normal or low normal.

As for B12 levels, the "serum B12" test measures total B12 in the bloodstream. (And many experts consider the standard ranges in US labs for serum B12 to be outdated and set too low. In Japan, a level below 500 pg/mL is considered a deficiency and is treated as such.) Only the B12 carried on the transcobalamin II transporter molecule (which is 4 to 20% of the total) is able to reach and be used in the cells (tissues) – this is measured by the HoloTc test.

It is possible to have good-looking levels of B12 in the blood, but still have a B12 deficiency in the cells (a functional deficiency).

By the way, are you willing to share the MCV value, found in the Complete Blood Count (CBC)? A value in the high-end of the standard range can indicate enlarged red blood cells (macrocytosis).

[Sammz]

My b12 was 1081 first blood draw, 1072 second blood draw, and 1170 third blood draw. I was taking biotin and a multivitamin so I don't think the b12 would be an issue. I was worried that is is too high but I saw a hematologist and he said that it is perfectly fine to have slightly elevated b12.
The MCV value was 86.
I know a lot of people who come to this forum probably end up not having ms but I was just wondering if anyone has had a similar experience before their diagnosis. I don't want to think I have ms but now I really just want to know asap so I know that these symptoms are normal for this disease. Does it sound like an ms situation to you guys?
Thanks

[ElliotB]

Do my symptoms sound like the start of ms?

Possibly, but there are around 400 illnesses that mimic the symptoms of MS.

And also did anyone on this forum experience the same situation but have NO lesions on first MRI???

Not everyone who has MS shows lesions in their MRIs.

Be patient and let your doctor's do their job to figure out what is going on. In the meantime, there are many things you can do for yourself with regard to diet, exercise, nutritional supplements and lifestyle to improve your health and speed up your recovery regardless of your diagnosis. There is a wealth of information on this site. Do a lot of reading.

Hope you feel better soon!

[Sammz]

Hey guys I have another quick question. At what point did any of you guys get your spinal tap done? I just went to my doctor again and we talked about ms and she said I'll have to talk to the neurologist about possible spinal tap. She wrote me blood orders for ANA testing. I will be getting this done today. However I was curious as to when everyone got a spinal tap done and if it showed protein even though the MRI was clear.

[lyndacarol]

Hey guys I have another quick question. At what point did any of you guys get your spinal tap done? I just went to my doctor again and we talked about ms and she said I'll have to talk to the neurologist about possible spinal tap. She wrote me blood orders for ANA testing. I will be getting this done today. However I was curious as to when everyone got a spinal tap done and if it showed protein even though the MRI was clear.

I have NEVER had a spinal tap. My diagnosis was made on the basis of symptoms and the lesions that were finally seen on my fourth MRI. Spinal tap results are not definitive – it cannot prove or rule out MS; there is NO definitive test for MS.

[David1949]

I had a spinal tap about 7 years after the initial diagnosis. In my case the disease was not following the course my doctor expected because it turns out that I don't have the relapsing remitting variety. Anyway my family doc suggested that I get a second opinion so he sent me to another neurologist. She suggested that I get a spinal tap as a check on the original dx. Unfortunately that also came back positive for MS.

[Sammz]

Sorry to keep asking more questions but can anyone tell me what symptoms they had that prompted them to go to the doctor? I'm dizzy a lot and I have brain fog as well. I'm not sure if anyone else has this. Also my eye gets really blurry. I have some arm weakness and numbness in my hand. Did anyone experience this?
Thanks

[NHE]

Sorry to keep asking more questions but can anyone tell me what symptoms they had that prompted them to go to the doctor?

I had numbness, pain and burning sensations in my right leg. After a month I developed optic neuritis and was sent for an MRI.