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Hi, I have not been diagnosed yet but the neuro suspects MS. I have been having a list of weird unexplained neurological issues for years. I had chronic migrains, vertigo, almost always have some level of nausea, blurred vision that comes and goes, double vision that came and went, pain in my eyes more so my left eye than right, facial twitches, weird sensations on my skin in different places, random boughts of itchiness, feeling like I'm going to pass out and can't breath when I take a shower that is too hot, sensitive to heat in general, extreme fatigue, random shortness of breath and wheezing noises (but clear chest xray, and pulmonary exam) It is hard to explain but I feel as if my lungs are sore or tired if that makes sense. Like I have been swimming all day and it takes extra effort to breath in. All of these things have been going on for over 8 years. I found out a few years ago that I had a vitamin D deficiency, suppliments did help to some degree, especially at first it helped me sleep. Now my vitamin D is within normal range but I am still having a bunch of issues.

I have been having trouble walking for nearly 4 months now. My legs do not hurt, usually, it just feels like they are heavy and hard to move, they feel weak and unsteady. If I force myself to try to walk even though it is difficult I can for short distances but it is exhausting and the muscles in my lower back and hips tense up and I feel burning in the front of my upper thighs almost immediately. I borrowed a walker but even with a walker it is hard to move. I have wet sensations in my lower back that feel icy hot. I woke up in the middle of the night one time, thinking my 8 year old peed in my bed because I felt my back get wet. This was a few weeks into the walking trouble. I realized after I woke her up (she doesn't normally sleep in our bed and does not wet the bed lol but I was sure she peed on me!), that she was not wet, the bed was not wet, and I was not wet. I had that same wet sensation several times since then.

I had the same issue with walking about 7 years ago that lasted for about a month, my doctor then was not very helpful at all. She didn't know what was wrong and really had a horrible attitude while I was in tears and frustrated wanting some kind of answer. It just got better without explanation and since I was better I didn't fight or push for any answers, and didn't think I would be able to get any since the symptom went away. Shortly after that episode of walking difficulty (about 3-4 months later) is when the chronic migraines started.

Although, it is not pain that is making walking difficult, I do have muscle pain at times when I push myself to walk and also have random shooting pains that go from my lower back down my leg. Usually my left leg which is weaker than my right, but lately I have had the same pain shoot down my right leg as well. I have the same type of nerve pain go from beneath my shoulder blades down my arms to my finger as well. Sometimes when I go to pick something up with either hand I have a quick sharp pain in my hand or wrist as well.

My primary doc ordered a brain MRI and gave me a neurologist referral (after several weeks of bothering her for a referal!). The MRI came back clear but the neurologist still seems to think it may be MS. He ordered and MRI of my cervical spin, and a VEP test. I am going in for the VEP tomorrow, and still need to schedule the MRI. He said I had very brisk reflexes in my legs.

I am not sure if this is MS but whatever it is I hope to get some answers soon. My question is, IF it is MS, how often do people with MS go from barely being able to walk at all for as long as 4 months to walking normally again? I guess I am hoping to hear that the issues with my legs is reversable.

Thank you for taking the time to read this!!!

Desirie wrote:Hi, I have not been diagnosed yet but the neuro suspects MS. I have been having a list of weird unexplained neurological issues for years. I had chronic migrains, vertigo, almost always have some level of nausea, blurred vision that comes and goes, double vision that came and went, pain in my eyes more so my left eye than right, facial twitches, weird sensations on my skin in different places, random boughts of itchiness, feeling like I'm going to pass out and can't breath when I take a shower that is too hot, sensitive to heat in general, extreme fatigue, random shortness of breath and wheezing noises (but clear chest xray, and pulmonary exam) It is hard to explain but I feel as if my lungs are sore or tired if that makes sense. Like I have been swimming all day and it takes extra effort to breath in. All of these things have been going on for over 8 years. I found out a few years ago that I had a vitamin D deficiency, suppliments did help to some degree, especially at first it helped me sleep. Now my vitamin D is within normal range but I am still having a bunch of issues.

I have been having trouble walking for nearly 4 months now. My legs do not hurt, usually, it just feels like they are heavy and hard to move, they feel weak and unsteady. If I force myself to try to walk even though it is difficult I can for short distances but it is exhausting and the muscles in my lower back and hips tense up and I feel burning in the front of my upper thighs almost immediately. I borrowed a walker but even with a walker it is hard to move. I have wet sensations in my lower back that feel icy hot. I woke up in the middle of the night one time, thinking my 8 year old peed in my bed because I felt my back get wet. This was a few weeks into the walking trouble. I realized after I woke her up (she doesn't normally sleep in our bed and does not wet the bed lol but I was sure she peed on me!), that she was not wet, the bed was not wet, and I was not wet. I had that same wet sensation several times since then.

I had the same issue with walking about 7 years ago that lasted for about a month, my doctor then was not very helpful at all. She didn't know what was wrong and really had a horrible attitude while I was in tears and frustrated wanting some kind of answer. It just got better without explanation and since I was better I didn't fight or push for any answers, and didn't think I would be able to get any since the symptom went away. Shortly after that episode of walking difficulty (about 3-4 months later) is when the chronic migraines started.

Although, it is not pain that is making walking difficult, I do have muscle pain at times when I push myself to walk and also have random shooting pains that go from my lower back down my leg. Usually my left leg which is weaker than my right, but lately I have had the same pain shoot down my right leg as well. I have the same type of nerve pain go from beneath my shoulder blades down my arms to my finger as well. Sometimes when I go to pick something up with either hand I have a quick sharp pain in my hand or wrist as well.

My primary doc ordered a brain MRI and gave me a neurologist referral (after several weeks of bothering her for a referal!). The MRI came back clear but the neurologist still seems to think it may be MS. He ordered and MRI of my cervical spin, and a VEP test. I am going in for the VEP tomorrow, and still need to schedule the MRI. He said I had very brisk reflexes in my legs.

I am not sure if this is MS but whatever it is I hope to get some answers soon. My question is, IF it is MS, how often do people with MS go from barely being able to walk at all for as long as 4 months to walking normally again? I guess I am hoping to hear that the issues with my legs is reversable.

Thank you for taking the time to read this!!!

Welcome to ThisIsMS, Desirie.

I do not have the answer to your question. Every case of MS is unique – not everyone has the same symptoms; not everyone has the same course of disease. Every other possible cause for your symptoms must be ruled out first before MS can be considered – there is no definitive test for MS.

There are many possible explanations for your legs/walking problem – it is entirely possible that this issue could be reversible.

I am interested to hear about your vitamin D deficiency. You say that your vitamin D level is within "normal range"… Your doctor must be monitoring it regularly – I hope you will share the actual numbers of your vitamin D test results. These numbers are often low in people with MS; I have recently read that the target level for people with MS should be near 100 ng/mL. (Vitamin D deficiency can cause migraine headaches, tight muscles, and poor quality of sleep, among other things.)

Your neurologist may not be comfortable with investigating a possible vitamin D deficiency (outside his expertise). It is estimated that over one half of the American population is deficient in vitamin D – be very sure that your blood level is adequate.

Thank you for your response. When I first learned that I was deficient was a few years ago, my Vitamin D was 16, anything below 30 I believe is considered deficient. It is currently at 40, and I agree that it should optimally be higher. Still taking supplements. Part of the problem I believe is that because of the migraines I had avoided sunlight so much and I think that just made the deficiency worse. But I am not sure if that explains all my symptoms. 40 is not as high as it could be, but is it low enough to explain my symptoms?

Hi Desirie,
Welcome to ThisIsMS. A diagnosis of MS is a diagnosis of exclusion. One of the conditions that you should be evaluated for is a vitamin B12 deficiency as it can cause many of the symptoms you've listed. A B12 evaluation usually includes 4 tests. These include serum B12, red blood cell (RBC) folate, methylmalonic acid (MMA) and serum homocysteine. Please see the following discussion topic for more information on B12. http://www.thisisms.com/forum/natural-a ... 24857.html In addition, make sure that you get a copy of the test results as the standard range for B12 is much too broad with the lower end of the range including many people who are actually deficient.

NHE

Desirie wrote:When I first learned that I was deficient was a few years ago, my Vitamin D was 16, anything below 30 I believe is considered deficient. It is currently at 40, and I agree that it should optimally be higher. Still taking supplements. Part of the problem I believe is that because of the migraines I had avoided sunlight so much and I think that just made the deficiency worse. But I am not sure if that explains all my symptoms. 40 is not as high as it could be, but is it low enough to explain my symptoms?

I have no medical background, but from my reading, 40 ng/mL could explain some of your symptoms. Vitamin D is needed in every cell; a low or deficient level can impact MANY organs and their functions; a deficiency can cause anything from dry skin to migraines, to thyroid problems, to neurological problems, to vascular problems, to high blood pressure, to cognitive problems… even LOTS more areas.

40 ng/mL is the bottom end of the acceptable range. It is not necessarily optimal for you.

As for vitamin B12… I urge you to follow the advice from NHE, as well. Vitamin B12 deficiency is often overlooked and can cause the same symptoms as vitamin D deficiency AND MS. It is one of the conditions that must be ruled out before MS can be considered.

"how often do people with MS go from barely being able to walk at all for as long as 4 months to walking normally again?"

There is no simple answer to your question, as each case of MS is different. Whether this is MS or not, you will need to be patient as your symptoms (should hopefully) subside over time.

Thank you for all the responses! I am going to make an appointment with my PCP to have my vitamin b12 levels checked. I have had iron deficiency anemia off and on since I was a teen. I haven't shown signs of pernicious anemia, as far as I know, but I will get my B12 levels checked. I try to stay on top of taking iron supplements but I don't tolerate the usual supplements very well. I started taking heme iron which is much easier on my stomach. My hemoglobin was a little low, I think my last test was about 4 months ago and it was at 11.5 g/dL, my Ferritin is really low at 9 ng/mL.

I asked my primary the last time I saw her if my hemoglobin or iron levels would explain my difficulty walking. She said it didn't. The lowest my hemoglobin has been was 6.5 which was after having my daughter (she is now 12), and I was able to walk then even though I felt a bit fatigue. They wanted to give me a blood transfusion but decided to just keep me there a few days until it went up enough to send me home. I continued on iron supplements. It seems the fatigue I feel now is worse than it has ever been even when my hemoglobin was very low.

I am changing my primary doctor. The doctor I have been seeing the past few years has been very frustrating. The doctor I had before her was great but difficult to get an appointment with. She was the one who suspected my vitamin D was low based on the symptoms I was having. I am going to see her again and have her test my B12. She is a D.O. and has a more holistic approach.

Thanks again!

Hi,

I'm quite glad you're changing your doctor.

All those deficiencies are worth checking for but also check for infections. They can mimic MS symptoms and/or be implicated at a deeper level. Check for mycoplasma, Lyme, Borrelia, Babesia and herpes family viruses. Also get a fecal test done as blood tests don't find everything. The bacterial infections can scavenge nutrients before you get a chance to use them and play havoc with your whole metabolism. If your doctor is holistic she may be interested in the first page of this note - http://www.thisisms.com/forum/regimens- ... 24019.html . It should give her a few ideas.
If you do have MS, the important thing is you drive the agenda. Often you will feel like you have been given a pat on the head and told to go away. Changing doctors is a good step in this instance. The question you need to ask is "is this person actually helping me?" . If they are not then try another. They are not all the same (a lot are!).

Regards,

Thank you very much Scott1!

I took note of all your suggestions and will discuss them with my doctor and push to get those test done! I had a VEP scheduled for yesterday, long story short after checking in, paying the copayment, and 1.5 hours of waiting to be called for the test, they came out to inform me that there was some issue with the insurance authorization and they couldn't do the test. I felt so bad for my poor husband who took the time off work to drive me there! Besides the fact that getting there and into the hospital it was scheduled at was exhausting.

I have a spinal MRI scheduled for next Wednesday, hopefully that goes better. Still waiting on the VEP to be rescheduled.

The neurologist I am seeing is an MS specialist, so if it is MS then I am hopeful that he will be helpful. I also suspect he is an MS patient himself, he said a few things that hinted at that and seems to have something going on that affects his speech. Whatever my issue is, I hope he is able to figure it out along with my primary doc!

I am really surprised that doctors do not test for deficiencies and the types of infections you listed when patients have these types of issues! It's sad really It's been 4 months and you guys have given me more info then my primary doctor could. I asked her what the various possibilities may be. She just shrugged her shoulders and said, "I don't know" and seemed a bit irritated by the question. So yeah I'm done with her lol

Have a wonderful day and week!

Desirie wrote:Thank you for all the responses! I am going to make an appointment with my PCP to have my vitamin b12 levels checked. I have had iron deficiency anemia off and on since I was a teen. I haven't shown signs of pernicious anemia, as far as I know, but I will get my B12 levels checked.

There's an over abundance of folic acid added to our food supply such that it can mask a B12 deficiency as symptoms of pernicious anemia will usually not be seen in complete blood count (CBC) test results. This is why the homocysteine and methylmalonic acid (MMA) tests are important. Both homocysteine and MMA may be elevated if B12 is functionally low. Note that high levels of MMA are thought to be specific to low B12, but homocysteine can also be elevated if either vitamin B6 or folate are low as well.

Thank you NHE! I wrote down the list of tests you provided and I'm going to take that with me when I see my doctor. I really appreciate you taking the time to share this info with me! I hope you have a great day!