Update on my current status: Questions
 

Hi all,

I just wanted to reach out to ask a few questions for some veteran advice. If you have followed my posts at all, you know I am a newbie to the neuro symptoms. I am nine weeks into my first real "flare".

1. Do you all notice wax and waning of symptoms (burning feet and hands, especially)? I am taking Lyrica, and have played with the dosage. I am unsure if the coming and going is to due the "illness" or the medication. I will burn for three nights in a row, sometimes into the day, then it cuts off like a light switch. Thoughts?

2. How many of you have problems with swelling and red hands? I notice when a) I either use my hands a lot doing chores or b) I am on my feet a lot during the day that I swell. My hands will also turn really red and even burn slightly. Odd pressure sensation? I sometimes describe it as the feeling of extremely dry skin.

3. Do you all experience extreme fatigue? I will literally sleep 13 hours and wake up just as drained as when I laid down. I will take medication, have a small glass of coffee, and walk some of the stiffness out and start to gain some energy. Household chores have become very difficult, as I become short of breath often. Climbing up the stairs of our basement...phew!! Is this a typical symptom of neuropathy? This makes it seem like more of a metabolic/cellular level issue. Some have led me to think B12 deficiency, but my primary doctor says no way. Some have made me believe it's fibromyalgia. I am so confused and not sure what to think. MY neuro appointment couldn't come any sooner. Praying for a call this week.

4. How many of you experience muscle weakness? This is one symptom that varies in intensity from day to day, but has consistently been lingering the entire 9 weeks. My arms are the worse and will even burn in pain once used "too much". But my legs give out pretty quickly too, and I have noticed my walk is odd. My knees buckle quite often and once I reach my max, I start tripping more easily and dropping things. I also find it hard to hold up my head a lot. I lay down throughout the day to alleviate this. I have noticed legs cramping at night, if I do use them a lot in the day. Also, lots of muscle twitching in the calves, arms, sides, shoulders, back!!

5. Since I am a little over two months in, can all the scary things be ruled out? What are the odds I could have MG, CIDP, Gullian-Barre?

6. Of course I have back and neck pain about three-four days per week. A lot of this depends on how much I physically exert myself of course.

I am having a bit of social anxiety about going out, even to the store because if no one understands what I am going through by looking at me on the outside. By the time I get to the register, I am breathing heavily and struggling to put my groceries on the check out belt. And lord knows I can't push the buggy out! I am now having my mom help me weekly to get the groceries. I am a 26 year old physically fit female, never smoked, never drink except occasionally socially. I now know that disease/chronic illness does not discriminate!

I appreciate each of you being here for me to voice my thoughts and concerns to. Other than my close friends and family, this is the one place I can go and know that others truly "get it"!!

I totally relate to the swollen red hands. My hands go through the full color spectrum throughout the day lol

Emily,

I haven't read all your posts, but after reading this one, I can say this screams autoimmune. This is exactly how symptoms come on (in flares) waxing and waning along with extreme fatigue. The SOB with stairs is comon and can be from a variety of things to include autonomic dysfunction (affecting BP & HR), your overall fatigue and weakness or just deconditioning from not feeling well and not doing normal activity (you can decondition much faster than one thinks).

I know I've read some of your posts, but I don't remember if you've said they done autoimmune testing. If not, they need to! You could also use a full battery of labs to check everything from anemia, glucose, vit D, B12, SED rate , CRP, to muscle enzymes (due to your muscle weakness)...not to mention all the autoimmune tests and regular labs from a CBC and CMP.

Refresh my memory on what tests you've had done.

UTGrad,

Do your hands turn blue or gray as part of the 'full color spectrum' you mentioned? If so, you should be evaluated for Raynauds.

Here is a list of tests:

Acth, Plasma Normal Acth, Plasma: 44 pg/mL Final
Epstein-barr Virus (Ebv) IgG + IgM Panel, Serum Normal Ebv Viral Capsid Ag (Vca) Ab (IgM): < or = 0.90 Final
High Ebv Viral Capsid Ag (Vca) Ab (IgG): 2.41 Final
High Ebv Nuclear Ag (Ebna) Ab (IgG): 3.05 Final
Folate, Serum Normal Folate, Serum: 21.0 NG/mL
T4, Free, SerumNormalT4, Free: 1.3 NG/dL
T3, Serum NormalT3, Free: 3.2 pg/mL
02/05/2015 Protein, Total + Protein Electrophoresis + Immunofixation, Unspecified Specimen
Normal Protein, Total: 7.1 g/dL Final
Normal Albumin: 3.9 g/dL Final
High Alpha-1-Globulins: 0.4 g/dL Final
Normal Alpha-2-Globulins: 0.8 g/dL Final
Normal Beta Globulins: 1.0 g/dL Final
Normal Gamma Globulins: 1.1 g/dL Final
Interpretation: Final
02/05/2015 CBC W/ Auto Diff
Low White Blood Cell Count: 3.3 thousand/uL Final
Normal Red Blood Cell Count: 4.30 million/uL Final
Normal Hemoglobin: 14.2 g/dL Final
Normal Hematocrit: 40.7 % Final
Normal Mcv: 94.7 fL Final
High Mch: 33.1 pg Final
Normal Mchc: 34.9 g/dL Final
Normal Rdw: 12.8 % Final
Normal Platelet Count: 186 thousand/uL Final
Normal Absolute Neutrophils: 1838 cells/uL Final
Normal Absolute Lymphocytes: 1119 cells/uL Final
Normal Absolute Monocytes: 261 cells/uL Final
Normal Absolute Eosinophils: 66 cells/uL Final
Normal Absolute Basophils: 17 cells/uL Final
Normal Neutrophils: 55.7 % Final
Normal Lymphocytes: 33.9 % Final
Normal Monocytes: 7.9 % Final
Normal Eosinophils: 2.0 % Final
Normal Basophils: 0.5 % Final
02/05/2015 Lyme Disease Igg+igm, Serum, Reflex Western Blot
Normal Lyme Ab Screen: < or = 0.90 index Final
02/05/2015 Vitamin D Total, 25-Hydroxy, Serum
Vitamin D, 25-Oh, Total: 37 NG/mL Final
Vitamin D, 25-Oh, D3: 37 NG/mL Final
Vitamin D, 25-Oh, D2: <4 NG/mL Final

01/30/2015 Vitamin B1 (Thiamine), Blood Vitamin B1 (Thiamine), lc/MS/MS: 9 nmol/L Final
01/30/2015 Iron + Total Iron-binding Capacity (TIBC), Serum Normal Iron, Total: 53 mcg/dL Final
Normal Iron Binding Capacity: 424 mcg/dL Final
Normal % Saturation: 13 % (calc) Final
01/30/2015 CMP, Serum or Plasma Normal Glucose: 85 mg/dL Final
Normal Urea Nitrogen (BUN): 11 mg/dL Final
Normal Creatinine: 0.76 mg/dL Final
Normal eGFR Non-afr. American: 108 mL/min/1.73m2 Final
Normal eGFR African American: 125 mL/min/1.73m2 Final
BUN/creatinine Ratio: not applicable (calc) Final
Normal Sodium: 139 mmol/L Final
Normal Potassium: 4.2 mmol/L Final
Normal Chloride: 104 mmol/L Final
Normal Carbon Dioxide: 22 mmol/L Final
Normal Calcium: 9.3 mg/dL Final
Normal Protein, Total: 7.6 g/dL Final
Normal Albumin: 4.5 g/dL Final
Normal Globulin: 3.1 g/dL (calc) Final
Normal Albumin/globulin Ratio: 1.5 (calc) Final
Normal Bilirubin, Total: 0.3 mg/dL Final
Normal Alkaline Phosphatase: 44 U/L Final
Normal Ast: 13 U/L Final
Normal Alt: 7 U/L Final
01/30/2015 Erythrocyte Sedimentation Rate by Westergren Method Normal Sed Rate by Modified Westergren: 2 mm/h Final
01/30/2015 ANA (Antinuclear Antibodies) Screen, Serum Normal ANA Screen, Ifa: negative Final
01/30/2015 Rf (Rheumatoid Factor), Serum Normal Rheumatoid Factor: 7 IU/mL Final
01/30/2015 T4, Free, Serum Normal T4, Free: 1.2 NG/dL Final
01/30/2015 TSH, Serum Normal Tsh: 3.31 mIU/L Final
01/30/2015 Vitamin B12 + Folate, Serum or Blood Normal Vitamin B12: 463 pg/mL Final
Normal Folate, Serum: 18.1 NG/mL Final
01/30/2015 T3, Free, Serum Normal T3, Free: 3.1 pg/mL

1)My neuropathy sure does wax and wane, but the pcp i went to see doesnt believe i have neuropathy, keeps trying to point it to mentally related.
When my neuropathy subside slightly, but it never goes completely away. When it comes back it is usually a new symptom, such as development small jolts of pain, and cool feeling.
2)red swelling hand, can be a sign of vascular problem, or allergic reaction,better to see a doctor about that.
3)your symptoms seem to be the result of the lyrica side effects.
5) did your issues began with lyrica or before?

Hi,

My issues began prior to Lyrica. The burning feet at night back pain/neck pain, and weakness in arms were all the reasons I was put on Lyrica. I know the differences betwen side effects and symptoms, mostly now. The lyrica helped me sleep for about two weeks, but has never really made me drowsy like most people report. Now that I've been on it for two months, any side effects have subsided. Except the skin issues I am having with minor acne. Thanks for your input!

Just to add, I also have the cooling feeling. My feet are either burning hot or cold as stone, most days!

No not blue or gray but definitely bright red!

I notice a few things... but really I cannot comment on everything.

Your MCV is just almost out of range. That indicates poor B12 status.

Your B12 is marginal, and you could try 1 mg a day of methycobalamin for a while and see if that helps. 400pg/ml is the new low and you are hovering over that. If you were on the way down when that test was done, you could be below it now.

Your white cells are quite low. B12 can help that a bit, but also it might indicate that your are fighting some kind of virus. White counts may go down if you have a viral illness. (your EBV titres were elevated).

The TSH of 3.31 is normal on a the old scale of .1- 5.0..but the new scale you would be just out of range and mildly hypo as the new scale ends at 3.0. Not all doctors use the new scale however.

You might think about getting a DNA test for methylation capability. Some of our posters here have done that and all of them showed genetic errors. I am beginning to think when people show up here with stubborn symptoms and a genetic panel would be helpful. 23andme.com offers this for $99.
The FDA will not let them "evaluate" the results but they do give you the results so you can look them up yourself.

Have you decided that this isn't hereditary neuropathy despite the family background? Trouble with stairs and muscle weakness are prime symptoms, and fatigue naturally follows from trying to perform the same tasks with weakened muscles.

Thank you so much for taking the time to look through my labs and offering this advice. All these are good points, and I will look into all concerns you have even more. I have been on B12 injections, but sparse. I am getting injections every two weeks, at 1ml. I have been getting these for two months (4 injections in). I am also taking 1000 mcg of oral B12 daily (have been doing this for one month). Sorry I failed to mention this before. I know it takes time to see the benefits, so I am not sure if I have been supplementing long enough. Thoughts? I will look into ordering this test.

If your levels were tested while you were taking B12 in any form, the results could be falsely elevated and not accurate. No shots for at least 3 days before, or oral... and 7 days would even be better.

When using the oral... make sure it is on an empty stomach with no food for an hour after. Oral is not passively absorbed well when food is present.

Thanks for this information. The hereditary component has def. not been ruled out. I FINALLY got an appointment to a neurologist!! Unfortunately, it is not until April 27, but at least I know it is going to happen. I am hoping that he strongly considers my family history. I also have DDD. I had back surgery at 19. And the pattern you describe is EXACTLY to the T on how I feel. When I finally have the energy to do things, I do a lot of things around the house. I even pushed myself to vacuum and run a couple errands, and then what do you know? By that night or the next day my weakness sets in. SMALL things such as holding the phone up to my ear causes extreme weakness. It feels so muscular, almost like MGers describe their symptoms. And once I rest for a couple days, I feel like I can do things again, then the pattern repeats itself.

I have a strong gut feeling that my health issues are hereditary. I am otherwise so healthy and young, eat well, exercise. It is a hard pill to swollow, dealing with this at such a young age. And my profession, wildlife biology, is very physical! If this is something chronic, how will I manage my career? Trying not to go there, but I just know that physically I cannot perform my physically demanding job. I am lucky for the meantime that I have a lot of computer work to do dealing with data and don't have to be outside working. Most days it is hard to compute as well. Within an hour my hand will go numb or my arm and elbows are burning.

I am a strong person, and I know that so many people on here struggle way worse than I do, so I hate to sound whiny. I just pray that some answers come my way soon. I also pray for all the others in similar situations. :grouphug:

I was not supplementing orally or getting injections when the test was ran. It was after the testing when we started the injections and I started taking the B12 orally. Because I read so much about the B12 and knew my levels were moderately low, I wanted to see if it would help to incorporate more B12. I have been taking the B12 on an empty stomach, for the most part.

Sent you a PM Emily