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Multiple Sclerosis Message Board


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I don't know where to start, but Iíll introduce myself. I am a 38 year old, mother of 3, wife for 17 years. The last of my babies will be 18 this year. I work full time in an IT field and Iím doing my best not to miss work, but these illnesses are taking their toll. :(

Starting last Saturday, I had unrelenting dizziness for 3 full days (at times vertigo) and on the advice of my PCP, went to the ER. I ended up getting an MRI, which showed [I]ďfew tiny scattered periventricular and subcortical white matter T2 and FLAIR hyperintensities are seen which are nonspecific. These can be found in such etiologies as multiple sclerosis, Lymeís disease and also identified in patients with migraine headaches. Other etiologies not excluded.Ē[/I]

The ER MD was concerned and said I really needed to see a neurologist. I have had migraines almost all my life, so I'm not sure if the neurologist will chalk it up to them or continue to rule out MS. Coincidentally, I was already in the process of getting approved to see a neurologist to get a consult for dysautonomia. I have neutrally mediated hypotension, postural orthostatic tachycardia syndrome and inappropriate sinus tachycardia. My blood pressure is rarely over 100/80. Frequently itís been from 76/39-92/62 and my pulse goes from 62 lying to 180 standing.

If I rewind over the last 10-12 years, I've been diagnosed with Chronic Fatigue Syndrome and Fibromyalgia too, but I don't think that it's a complete picture of me. The rheumatologist mentions that my sister and aunt have FMS; however, the jury is out on their true diagnoses too. My aunt has been told she has MG and many other things, which were rescinded and my sister has urinary/bowel incontinence (sheís 37), avascular necrosis and Von Willebrandís, to name a few.

I have not been excluded from having narcolepsy as my DNA test came back positive and I have a sleep latency of 5.7 (>12 is normal). Because I didnít have sleep onset REM periods the MDís comment, [I]ďher test would probably turn out more positive in the future months, and it will need to be repeatedĒ. [/I]I know that I [I]can [/I]have sleep onset REM, because on a break at work, I have set my alarm for 15 minutes and fell asleep and was dreaming before the alarm went off. I also have hypnogogic hallucinations, about 3-4 times a year. I have had sleep apnea and restless leg syndrome diagnosed during my sleep studies.

I also have over [B]50 [/B]IgE food allergies. I am allowed to eat any meat, fish, dairy, any eggs; however I am limited to 10 veggies, 6 fruits, 3 nuts and 2 seeds along with a handful of spices.

I had Vitamin D deficiency, but itís up to 63 now and my lipids are almost back to normal. My total cholesterol was up to 319 and when I took my Vitamin D, it went down to 211 in 4 months! Now Iím on a maintenance dose of 5,000-10,000IU D3/daily.

Iíve had some abnormal salivary cortisol readings and the MD says I have adrenal insufficiency, but not Addisonís.

My functional medicine MD says he thinks that my problems are autoimmune.

I found an amazing review of systems that helped me collect my thoughts for my symptoms.

[CENTER][U]Comprehensive Review of Systems[/U][/CENTER]
[U]Dermatology[/U]: rash, hives, itching
[U]Endocrine[/U]: rarely sweat, cold intolerance=pain, heat intolerance=presyncope or have tachycardia (I feel like I "absorb" my surrounding temp. Cold makes me REALLY cold and heat makes me REALLY hot, plus I can't think straight)
[U]Neurology[/U]: headaches (all types from tension to migraine), tingling in feet/hands, pins/needles, burning sensations (like a hot iron), numbness in hands (was told I have ulnar neuritis >10 years ago; however, it only bothers me when I'm sleeping and I type all day), memory loss (short and long term), dizziness, gait abnormality, random bursts of electric like pulses or shooting pains, + Romberg's sign
[U]Ophthalmology[/U]: transient eye pain, vision blurring, transient bilateral vision loss-1984
[U]Hematology[/U]: swollen glands, fatigue, hx anemia (resolved with hysterectomy)
[U]Constitutional[/U]: weight loss (was 146 12/13 and now 132; went from size 12 to 6-8), loss of appetite, weakness (hard to drink, can hardly hold glass, driving is hard; have to switch from hand to hand)
[U]ENT[/U]: transient hearing loss, sore throat, transient ringing in ears
[U]Cardiology[/U]: shortness of breath with little exertion, transient palpitations, dizziness, chest pain, tachycardia, pre-syncope and syncope
[U]Gastroenterology[/U]: nausea, heartburn (hiatal hernia), abdominal pain, constipation, diarrhea (IBS)
[U]Muscular symptoms[/U]: joint stiffness, leg and toe cramps, history of joint pain, back pain and spasms, neck pain, muscle aches, . I have many spasms in many different muscles. It feels like a charley horse. I have lots of muscle twitching too and some occasional tremors in my hands.
[U]Psychology[/U]: tension/stress, sleep disturbances (non-restorative sleep for >5 years, maybe longer)
[U]Genitourinary[/U]: history of heavy periods/dysmenorrhea (resolved with hysterectomy), dysuria, increased urinary frequency and urgency, transient pelvic pain (could be ovarian cyst that was present on u/s last year)

I keep reading the advice that I need to see an MS specialist; however, it took me 2 weeks to get this neurology consult and he's supposed to be dealing with the dysautonomia. Hopefully, if he isn't an expert, he'll know one.

Thanks for hanging in there and listening to the story of my life.





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