New here hoping you can relate
 

I was dx with a stroke six months ago, after I had facial paralysis, temporary vision loss, and an awkward gait. The testing was all negative, but based on those symptoms I was diagnosed with having a stroke (I'm only 32).

Before the stroke, I had been complaining of leg pain, and the doctor thought I pulled something. The pain got better, then came back in both legs, along with tingling and occasional numbness.

After the stroke, the tingling and strange sensations spread to my hands, feet, and sometimes arms. It can feel like pins and needles, pain, or burning (like I sandpapered my skin and poured alcohol on it). The neuro stated I am having idiopathic neuropathy, but he blames stress and gave me psych meds.

Recently, my eye has started drooping more often. Sometimes I can feel my face going numb, while other times I only notice it when I look in the mirror. The doctor tested for MG, and it came back negative, so once again he is insisting on psych meds.

My dad had NF1, his mom had parkinsons, and a few relatives have MS, so there is a family history of neurological problems.

Does anyone here also have eye or face droop with their PN? I am switching doctors next month, but I'd like to have a decent starting point (and no more crazy talk).

Thanks

Welcome to NeuroTalk:

Have you had blood work for B12 and Vit D?

Low B12 can make for very odd neuro symptoms. If you have the test, get the results, and do not accept "normal" from your doctor. Lab ranges in US go down very low, and that has not been changed to reflect new information on B12 status. You should be at least 400 in US units.

Low Vit D is also problematic... your target there is 50 US units.

These two things are the most common things to start with.

I have a high B-12 and folate level (well within the ranges), but my vitamin D was 9. I have the script, but it makes me nauseous. Still, I am taking it but I seem to have a malabsorption issue because it is always low no matter what. I still don't know about the eye droop though.

The RX doesn't work. New studies show it 87% less effect than D3 which is OTC.

The general rule is 1000 IU D3 for each 10 points you need to raise. In your case 5,000 IU D3 daily would be a good start.
People who have more fat on them, sometimes need more.

The capsules for the OTC are tiny, and easy to tolerate, unlike the RX one which is D2. They typically cost about $5.00 a month... very little.

There is a condition called MTHFR mutation, that results in B12 and folic acid not being methylated properly in the tissues, and hence they will show up in tests floating around but not be the active form. So I would suggest you try methylB12 orally for 3 months to see if you detect any differences. If you do, then you will need both methylB12 and methylfolate for life. 10-30% have this error. It leads to elevated homocysteine which can cause STROKES and blood clots! Which seem to be your problem. You can get a MMA test and/or homocysteine test and if either or both are elevated, then your B12 is not working.

Hi Agirlandhertort1, :welcome_sign:
Your description of the burning pain - "like I sandpapered my skin and poured alcohol on it" - is really good, despite how bad it really is - many of us know...

Is it just your eye that droops, or the whole side of your face? Have you had a rash of any kind? I have heard that Lyme Disease can cause facial drooping. There is a forum for that here on NT.

A friend of mine once got Bell's Palsy, which caused the entire one side of his face to drop. This was temporary, and he recovered fully within a few months.

...Just a couple of things (possible starting points/things to eliminate) to ask your new doc about (and FWIW, I think changing docs was the right move).

Doc

Thank you all for your responses.

I did not know about the Vit D3, but I am going to the vitamin shop tomorrow to get some. If nothing else, I am hoping it helps to make the symptoms more mild. I used to take B12 and B6, but it gave me really bad headaches. Maybe I'm one of those weirdos who gets sick from vitamins, as I remember my prenatals used to make me sick too :o.

As for the Bells Palsy, my neuro did a follow up and stated that I do not have it. Basically, he said it gets worse and then slowly gets better, but my droop only lasts for a few hours so Bell's was ruled out.

I did get a Lyme test, but it came back negative. It seems that all my tests come back negative, and it's really frustrating.

I do have heart disease/tachycardia, which involves misread electrical signals in my heart's conduction system. I'm now wondering if the heart disease is either the cause of my PN, or if the PN (and scrambled signals) the cause of my tachycardia? Too bad neurologists aren't cardiologists, and vice versa. Do any of you have anything similar?

There are autoimmune diseases that can affect the heart.

En bloc here and cyclelops both have those issues and have
Sjogren's syndrome.

If you search them in member's list, you can see their posts.

This is an example:
http://neurotalk.psychcentral.com/sh...ht=sjogren%27s

http://neurotalk.psychcentral.com/sh...377#post855377

My first thought when reading your posts is a concern for the stroke. If all the testing (and I'll assume CT and/or MRI of the brain) was negative, then the 'stroke' was likely a TIA, or mini-stroke. Your symptoms suggest this as a possibility. Now, what would be causing a stroke at your age...that's the question. Have they checked aCL (anticardiolipin) for antiphospholipid syndrome? If not, I would ask for the simple blood test to confirm or rule this out.

Also, have you been checked for autoimmune diseases...ANA, RF, SSA, SSB, etc? Has anyone even considered an autoimmune angle on your problems?

Could you tell me if you have other symptoms...even if they seem insignificant? Anything like dry eyes, mouth, unusual fatigue, joint pain, rashes, unusual nausea or fullness even after eating just a little, fullness that lasts a long time. Anything might be important.

As for the heart rate/rhythm, sound like you may have some autonomic dysfunction. Do you have problems with your BP dropping when you stand? What about balance? What meds are they using to control your tachy rates?

I know it's a lot of questions, but the more info your provide, the easier it may be to offer suggestions.

Hi. I hope you can tell me more about the symptoms you mentioned?

1. Is your joint pain a direct symptom of Sjogrens, or is it arthritis-related?
2. How does your rashes look like? and how long do they last? do they come and go? when they are gone, do they leave marks?
3. How long does the "feelling of fullness" stay after eating?

Thank you.

So far, my neuro has run the following tests:

MRI/CT of the brain, neck and lumbar spine; IFE serum blood work; Lyme antibody test; PROTEIN ELECTROPHORESIS SERUM; 2 hour glucose; and B-12 and folate. Recently, I made my neuro test for Myasthenia Gravis too. . . all were negative or within the normal range.

My GP did these tests:

arthritis panel (only the ESR was elevated); thyroid; auto hemogram/platelet (WBC and Hemocrit were slightly low); and vitamin d (which was severely low at only 9).

I am currently on an aspirin regime, and you were correct, I had a TIA. I was diagnosed with tachycardia/heart disease/2nd degree AV block. I have had osteoarthritis in my hand for years, but I now have joint pain in both hands, feet, knees, and hips. I attributed it to the low vit d, but the supplements (50,000 iu) don't seem to be helping. I did go purchase some d3 (thanks Mrs. D) so I'm hoping it will help. I have poor balance (I tip into walls and have even fallen down the stairs with my toddler) visual disturbances, like vertigo and blurry vision, brain fog where I can't articulate my words, and this horrible PN. I typically don't get many headaches, and my appetite is relatively normal. I do think I might have IBS, but I try to eat a high fiber diet, and it seems to help.

I did have a horrendous last pregnancy, where I suffered malnutrition and had to have a PICC line placed (hyperemesis). The line became infected, and I was septic due to g-negative bacteria. I have asked if that could have long-term consequences, but have been told no.

I really appreciate you asking me these questions, so I have tried to be as thorough as possible. :You-Rock:

One thing that should be investigated--
 

--is post-stroke or Central Pain syndrome, known to be a consequence of strokes (and a number of other brain conditions), especially along the spinothalamic sensory tracts:

http://www.painonline.org/intro.htm

www.centralpain.org

http://www.ninds.nih.gov/disorders/c...ntral_pain.htm

If your symptoms appeared after the TIA, then Glenntaj has some valid points. If you had the symptoms before the TIA, then I think you need to have an autoimmune work up.

You could start with your GP or Neuro (if they are willing to investigate) OR go to a rheumatologist. You need some basic AI labs, (ANA, ANCA, RF, SSA & SSB, Lupus anticoagulant, C3 & C4, autoimmune profile, cryoglobulin, IgG subclasses)...just to start. There are more, but can't think of them off the top of my head. If you ask for an autoimmune (full) work up, they will know.

Tell me more about the heart disease. How was this diagnosed? Are you taking anything for it? What are your symptoms? And do you have problems with your BP when standing?

If you have a clotting issue, it can affect the heart issue. So I think the focus should be on 'what' caused that TIA/stroke. So you should get the aCL blood test done for sure...along with the lupus anticoagulant, protein C & protein S, PTT, and various other clotting factors. Has the temp vision loss, facial paralysis, etc happened more then that once? If so, how many times? This TIA/stroke cannot be ignored...so I'm glad you're taking the aspirin. Has it occurred again since you started the aspirin?

Once you get some basic labs done, then hopefully the results will give a direction to follow. This is not necessarily a fast process and takes some patience.

In most cases with Sjogren's, the joint pain is directly related to the AI disease...although early arthritis is a problem.

I was asking the OP about possible rashes...in case she had something that might indicate lupus (malar rash) or livedo reticularis, which can be associated with antiphospholipid syndrome. I have livedo, which is not technically a rash, but gives a red lacey look to the skin. It is there all the time.

The feeling of fullness can be related to gastroparesis or delayed emptying, which is an autonomic dysfunction. It can last for hours.

I was just trying to give some examples of symptoms that she may have, that could be important to know. Many of these things are related to Sjogren's or other AI diseases, which can be associated with certain types of PN.

The vision loss may have been an amaurosis fugax. Look it up and see if that sounds like what happened. Your vision loss ONE eye...and was temporary, right??

Please keep us posted. I'd like to hear how your neuro appt goes.

Wishing you the best.