Hi FG - Welcome to our group.
It sure seems like you have a lot on your medical plate. Given the breadth of you symptoms it's hard to imagine that there is a single cause. It's harder still to think that that cause might be MS. Bit I'm not a doctor.
I have not seen a connection between things like sleep apnea, night terrors, bilateral hip pain, sinus infections and MS. Having MS does not exempt us from having other, unrelated health issues. My hip replacement, for example, had nothing to do with my MS.
For your upcoming neuro appointment I would try and focus on the top 3-4 symptoms in terms their impact on your quality of life. Things like numbness, muscle weakness, heat intolerance. If you try and go all the way back to the beginning and list every symptom you risk losing the doc. They're only human after all :-) I also would not go in with a diagnosis in mind or a list of tests you think they should run. Let them do the heavy lifting!
Welcome to the world of mysterious maladies :-)
Kyle
Thanks so much for your response! It has been overwhelming to not feel good for such a long time.
I had tried listing all of my symptoms, because I was afraid that if I didn't list everything, then I might miss an important piece of the puzzle.
I think that the sinus issues and sleep apnea are due to me having a very small, arched palate (just genetics there). My oldest son had the same thing, and he had a palate expander (my parents couldn't afford orthodontist treatment way back when), and afterwards his sinuses were sooo much better. It was like making more room in the sinus area, made things work better.
I go this cycle. Get worse, go to doctors, they do a bunch of expensive testing, or just blow me off, they usually don't figure anything out, eventually get a little better, or just learn to deal with it, and try to live my life the best that I can, until it gets so bad again that I can no longer function, then I start all over again.
It is just frustrating. My family is in so much debt due to all the medical bills over the years. I just hate to start this wild goose chance yet again, and add more debt.... Only to not find out anything once again.
Hi and a welcome from me too, though to be honest i can't actually pick out anything specifically suggestive of MS from your list of sx's, some of the sx's on your list can be connected to MS but they are also associated to a lot of other conditions too, so what is standing out more to me is what's 'not' usually related to MS.....
Bursitis - hip/joint pain so bad, that some days I could not walk, Dry skin, Large pores on face, Red rash on cheeks, Bruise easily, Dandruff, dry skin and sores on scalp,Thinning, dry hair, Nauseas often, Can sometimes hear heart beating/pulse in ears, Night terrors, Bladder issues (leakage especially when I cough), Frequent sinus infections, Chronic sinus congestion, Difficulty hearing when there is background noise (I feel like my ears are stopped up).....
You've mention a financial concern and i am wondering since you've already got dx of migraine(?), sleep apnea, Hashimoto's thyroiditis and pituitary insufficiency etc if it would be more cost effective to first discuss with your family doctor if your 'complete' list of issues, could 'all' be explained by your diagnosed conditions and or if your combined dx conditions and sx's are common to any one particular chronic disease eg Lupus and see if your doctor can help to work out which type of doctor would be the best type for you to see next.
Cheers...........JJ
Thanks so much for the responses. I appreciate it so much! It is helping to lad me in the right direction. I am wondering why I thought MS in the first place. Then, I looked up the symptoms again.
Numbness or weakness in one or more limbs - "I have general muscle weakness, and am now having numbness in tip so fingers".
Partial or complete loss of central vision, usually in one eye, often with pain during eye movement (optic neuritis) - "vision is worsening, but no blurry/ double vision"
Double vision or blurring of vision - no
Tingling or pain in parts of your body - "I will random pain, mostly in my left hand, where it feels like shot poker is being stabbed into a bone" "also, in my right thigh and left calf, I will have these little 'spasms' in my muscle. They are hard to describe but it's like that small area of muscle is short circuiting
Electric-shock sensations that occur with certain head movements - no
Tremor, lack of coordination or unsteady gait - "left hand tremor, poor balance"
Slurred speech - no
Fatigue - yes, this is my biggest complaint
Dizziness - yes, often feel dizzy or woozy headed
Heat sensitivity is common in people with multiple sclerosis. Small increases in body temperature can trigger or worsen multiple sclerosis symptoms. - 'yes, this has been an issue for a very long time. I have to plan my life around this, as I cannot tolerate being overheated, it makes me very ill"
I had my neurologist appointment yesterday. I am very impressed with this doctor. He is very thorough. Here are some things that are listed on my online healthcare plan.
TCD / CDS - TODAY TO EXCLUDE VARIOUS VASCULOPATHIES / UNUSUAL VASCULAR CAUSES FOR SYMPTOMS ( INCLUDING CHRONIC DISSECTION, VASOSPASM OR VASCULAR INFLAMMATION) AS WELL AS COMMON CAUSES INCLUDING SIGNIFICANT ATHEROMATOUS DISEASE IN THE ANTERIOR AND POSTERIOR CIRCULATION.
CURRENT PROBLEM IS VAGUE AND NONSPECIFIC THEREFORE DIFFERENTIAL REMAINS LARGE. EXAMINATION IS NORMAL INCLUDING CRANIAL NERVE EXAM. DOES NOT FIT INTO ANY ONE PNS DISTRIBUTION (I.E. CRANIAL NERVE, MYOTONIC DISORDER, HEMIFACIAL SPASM, STIFFMAN, POLYNEUROPATHY), NO BRAINSTEM PATTERN (LACK OF BRAINSTEM SIGNS OR SYMPTOMS ON EXAM/HISTORY), NOR HEMISPHERIC CNS PATTERN (SEIZURES, ENCEPHALOPATHY OR STATIC FOCAL DEFICITS). THERE ARE MIXED PNS AND CNS SYMPTOMS AND YET I AM UABLE TO FIT HER MYRIAD OF MULTIPLE SYMPTOMS INTO ONE NEUROLOGIC DISEASE ENTITY. NEUROANATOMICALLY OR NEUROPATHOPHYSIOLOGICALLY. THEREFORE, WE NEED TO CONSIDER A WIDE RANGE OF DISEASES THAT CAN AFFECT VIRTUALLY EVERY ORGAN SYSTEM, SUBJECTIVELY OVERSHADOWING ANY OBJECTIVE FINDINGS.
CURRENT NEUROIMAGING SHOWS NO STRUCTURAL/NONSTRUCTURAL ABNORMALITIES BUT IS OUTDATED.
THEREFORE DIFFERENTIAL INCLUDES -
A. TIA (UNLIKELY GIVEN LACK OF FOCAL OR BRAIN STEM SYMPTOMS), THIS CAN BE FROM VARIOUS CAUSES (atheromatous disease, vasculitis, vasospasm, hypercoagulable state, dissection, etc),
B. COMPLICATED MIGRAINE (UNLIKELY GIVEN THE VARIABILITY BUT POSSIBLE GIVEN THE ASSOCIATED HEADACHE. IT IS DIFFICULT TO PUT HER SYMPTOMS INTO ANY ONE COMPLICATED MIGRAINE SYMPTOM),
D. STRESS/NONORGANIC RELATED EVENTS,
E. REACTIVE HYPOGLYCEMIA.
F. WE ALSO NEED TO CONSIDER NONSTRUCTURAL METABOLIC( I.E. VITAMIN DEFICIENCIES) /AUTOIMMUNE( I.E. CTD ) /GENETIC( II.E MTHFR) / HYPERCOAGULABLE ETIOLOGIES THAT CAN AFFECT MORE THAN ONE NERVE OR CNS DISTRIBUTION.
G. PNS DISEASE - POLYNEUROPATHY LARGE OR SMALL FIBER .MYOPATHY, NMJ DISEASE, STIFFMAN SYNDROME
EXAM NORMAL EXCEPT FOR MILD SIGNS OF SYMPTOM AMPLIFICATION AND MILD LOWER EXTREMITY HYPERREFLEXIA WITHOUT PATHOLOGIC REFLEXES. .
DISCUSSION
CURRENT PROBLEM IS VAGUE AND NONSPECIFIC THEREFORE DIFFERENTIAL REMAINS LARGE. EXAMINATION IS NORMAL INCLUDING CRANIAL NERVE EXAM. DOES NOT FIT INTO ANY ONE PNS DISTRIBUTION (I.E. CRANIAL NERVE, MYOTONIC DISORDER, HEMIFACIAL SPASM, STIFFMAN, POLYNEUROPATHY), NO BRAINSTEM PATTERN (LACK OF BRAINSTEM SIGNS OR SYMPTOMS ON EXAM/HISTORY), NOR HEMISPHERIC CNS PATTERN (SEIZURES, ENCEPHALOPATHY OR STATIC FOCAL DEFICITS). THERE ARE MIXED PNS AND CNS SYMPTOMS AND YET I AM UABLE TO FIT HER MYRIAD OF MULTIPLE SYMPTOMS INTO ONE NEUROLOGIC DISEASE ENTITY. NEUROANATOMICALLY OR NEUROPATHOPHYSIOLOGICALLY. THEREFORE, WE NEED TO CONSIDER A WIDE RANGE OF DISEASES THAT CAN AFFECT VIRTUALLY EVERY ORGAN SYSTEM, SUBJECTIVELY OVERSHADOWING ANY OBJECTIVE FINDINGS.
OUR MAIN GOAL WILL HAVE TO BE TO DECIDE WHETHER THIS IS TRULY A NEUROLOGIC DISORDER OR NOT.
CURRENT NEUROIMAGING SHOWS NO STRUCTURAL/NONSTRUCTURAL ABNORMALITIES BUT IS OUTDATED.
THEREFORE DIFFERENTIAL INCLUDES -
A. TIA (UNLIKELY GIVEN LACK OF FOCAL OR BRAIN STEM SYMPTOMS), THIS CAN BE FROM VARIOUS CAUSES (atheromatous disease, vasculitis, vasospasm, hypercoagulable state, dissection, etc),
B. COMPLICATED MIGRAINE (UNLIKELY GIVEN THE VARIABILITY BUT POSSIBLE GIVEN THE ASSOCIATED HEADACHE. IT IS DIFFICULT TO PUT HER SYMPTOMS INTO ANY ONE COMPLICATED MIGRAINE SYMPTOM),
D. STRESS/NONORGANIC RELATED EVENTS,
E. REACTIVE HYPOGLYCEMIA.
F. WE ALSO NEED TO CONSIDER NONSTRUCTURAL METABOLIC( I.E. VITAMIN DEFICIENCIES) /AUTOIMMUNE( I.E. CTD ) /GENETIC( II.E MTHFR) / HYPERCOAGULABLE ETIOLOGIES THAT CAN AFFECT MORE THAN ONE NERVE OR CNS DISTRIBUTION.
G. PNS DISEASE - POLYNEUROPATHY LARGE OR SMALL FIBER .MYOPATHY, NMJ DISEASE, STIFFMAN SYNDROME
PLAN:
1. LAB WORK - REASONS ABOVE
2. TCD / CDS - TODAY TO EXCLUDE VARIOUS VASCULOPATHIES / UNUSUAL VASCULAR CAUSES FOR SYMPTOMS ( INCLUDING CHRONIC DISSECTION, VASOSPASM OR VASCULAR INFLAMMATION) AS WELL AS COMMON CAUSES INCLUDING SIGNIFICANT ATHEROMATOUS DISEASE IN THE ANTERIOR AND POSTERIOR CIRCULATION.
3. NEUROIMAGING OF THE BRAIN TO EXCLUDE STRUCTURAL/NONSTRUCTURAL CAUSES FOR ABOVE
DIFFERENTIAL **SPECIFICALLY DEMYELINATING DISEASE GIVEN SHE HAS MILD HYPERREFLEXIA AND NONSPECIFIC SLOWING ON EEG
4. WILL CHECK FUNCTIONAL BRAIN STATUS WITH EEG TO EXCLUDE SOMATOSENSORY SEIZURE AS A CAUSE FOR TRANSIENT NEUROLOGICAL SYMPTOMS. EEG CAN ALSO BE USED TO LOOK FOR ANY FOCAL CEREBRAL DYSFUNCTION THAT MAY SUGGEST A STRUCTURAL LESION OR AREA OF CEREBRITIS.
5. MUSCLE ULTRASOUND NEXT VISIT
6. FIRST NEED IDENTIFY THE PRESENCE OR ABSENCE OF PNS DISEASE WITH NCS (check large fiber component) and ENBX (check for small fiber component). BIOPSY WILL SERVE NOT ONLY TO MORE DEFINITIVELY DIAGNOSE NEUROPATHY BUT IS THE ONLY WAY TO CHECK FOR SMALL FIBER NEUROPATHY ALSO CAN EXCLUDE CERTAIN CAUSES SUCH AS VASCULITIC AMYLOID NEUROPATHY.
This great. You have a doctor that is listening to you, looking at you and THINKING. That is what you want and need. Congratulations.
Quix
Thanks! I almost tried to switch to a different neurologist. I didn't really know much about this one, and I get so much anxiety from seeing a new doctor. I am so glad that I went. He is so thorough. So, maybe I will finally have a diagnosis, whatever that may be.
I agree with Quix. Looks like you found a keeper :-)
Kyle
Keep us up on this, both out of our collective concerns, as well as seeing if this doctor gets a gold star recommendation for others in your area.
I definitely will update this post as I have more tests. I was wondering also, is it ok that I am only having a brain MRI, and not one of the spine also? Since he mentioned on the reason for MRI "SPECIFICALLY DEMYELINATING DISEASE"
It certainly won't hurt to ask him about ordering c & t spine studies in addition to the brain. Also, to maximize the efficiency of your time in tube, make sure that all studies are done with and without contrast. You may as weel get all possible MS related pictures done while you're there.
Kyle
Thanks! Well, I just sent a message and asked about adding the spine to the MRI, and if it could be with and without contrast. I will wait and see what they say. The brain MRI is scheduled for the 21st.
So, I had my MRI this morning. It went well, I was nervous, but handled it fine. They did just the brain, with and without contrast. I had asked about the spine, and was told that due to insurance, that they would do the brain first, and if it doesn't show anything, then the spine would be ordered.
While I am waiting on results, of course, I have been going over things in my mind, and rereading the neuro's care summary. Things that are standing out in my mind are: .
"MILD LOWER EXTREMITY HYPERREFLEXIA WITHOUT PATHOLOGIC REFLEXES"
"**SPECIFICALLY DEMYELINATING DISEASE GIVEN SHE HAS MILD HYPERREFLEXIA AND NONSPECIFIC SLOWING ON EEG"
" EEG CAN ALSO BE USED TO LOOK FOR ANY FOCAL CEREBRAL DYSFUNCTION THAT MAY SUGGEST A STRUCTURAL LESION OR AREA OF CEREBRITIS."
"FIRST NEED IDENTIFY THE PRESENCE OR ABSENCE OF PNS DISEASE WITH NCS"
I keep seeing that "nonspecific slowing on EEG", and of course, it scares me. I know that I need to just be patient and not speculate, as it does me no good, but there HAS to be something causing that, right?
Also, my eyes are just getting worse. Every time I go outside, if even for just a few minutes, I get overheated, and I come back inside and my eyes are really wonky. One pupil will be way off center in my iris, and the other pupil is MUCH larger. It is really freaky looking. Weird that the opthamologist didn't find anything...
All of the blood work that the neuro ordered came back negative (Lyme Disease, ANA, etc...) except he said that I have a problem processing folic acid, so he called in a prescription for that. I don't think the actual MFTHR genetic test came back yet, though, just that my folic acid is high.
Anyway, I keep reading through the notes, and it does seem to me like the Neuro is leaning towards something like MS, no? Or, am I reading too much into this? It is just that I have dealt with these issues for sooooo long, I just want to know what is going on.
And, I was talking with a friend yesterday, and while a MS diagnosis terrifies me, at this point, I just want to KNOW! And, it's not like the diagnosis itself, is going to add or change my symptoms. I have already been dealing with the symptoms for years. But, at least knowing, would help me figure out what changes I could make in my lifestyle to help myself, plus there might be treatments that could help me.
And, Is there anyone else out there, who would like a diagnosis (whatever that might be) so they don't feel like a crazy person? To feel like your symptoms are real, and not something exaggerated. To be able say, I have "this", and possibly have people show some empathy, instead of just looking at you like you are lazy????
I haven't heard anything from my Neuro yet, but I just remembered that I have an online health account with the facility group that I had the MRI at. I went online and my results were posted. Everything was normal.
"TECHNIQUE: Multiplanar MR imaging of the brain was performed without and with gadolinium contrast.
FINDINGS: The brain parenchyma appears normal. There is no finding to suggest hemorrhage, mass, infarct or hydrocephalus. There is no abnormal parenchymal or leptomeningeal enhancement. Normal vascular flow voids are demonstrated. The pituitary gland is normal in size and signal intensity. The orbits, paranasal sinuses and mastoid air cells all appear normal."
I already have an appointment next week for a electromyogram and nerve conduction study, then the next week for a nerve biopsy. Then, towards the end of June I have an apptmt for an Ultrasound of my legs (weak legs, hyperreflexia), and the followup with the Neuro. Also, he did mention that he would order an MRI of the spine if the brain MRI is clear. But, I am relieved to know that my brain is in good shape.
Hi,
I totally understand having health issues & symptoms for years...without knowing exactly what's going on! I was diagnosed with Fibromyalgia in 2002,but don't feel that everything should be blamed on that diagnosis!
This next week,I will be heading to JWM Neurology www.jwmneurology.com
to see if they can help me!Like you,I've been made to feel like 'it's all in my head"!
cramp_n_mystyle, I truly hope they can help you figure out what is going on. It is so frustrating to go for years without a diagnosis, or without the right one.
I had my EMG/NCS today. I have to say it was awful. I lay on the bed with tears running down my face. He tested the right arm and leg. Those muscles are still very sore. But, the results are normal. I am guessing that this means that there is pretty strong results now, showing that this is not MS. I wonder if there should be any other testing done? Or if this proves that it's not MS? Also, he did also schedule me for a Nerve Biopsy of my foot, this was before the EMG/NCS was done. Honestly, since that was normal, I think I want to cancel the nerve biopsy. I don't see the point of it, and I am feeling gun-shy now, after how painful today's testing was. :(
I am wondering also, if I should still ask for the spine MRI? My eyes have been much worse lately. Almost eery time that I look in the mirror (On average, 2-3 times a day), when my pupils are dilated (if I am in bright light, my pupils are too tiny to notice difference), they are uneven, and a lot of times, on pupil is offcenter in my iris. This has been going on for about 10 years. It almost completely went away when I was put on Prednisone (which makes me think it is some sort of inflammation that is causing it). But, recently, it is back and getting worse and worse and worse. Also, I am occasionally seeing "floaters". They look kind of like little pieces of thread, like on a microscope... if that makes any sense.
Or should I be satisfied that the MS possibility has been fully explored, and it is not that? I do have an appointment with a Rheumatologist at the end of next month. I don't hold out much hope for him though, as my Aunt went to Him, in January and didn't like him, and he doesn't have great reviews. I also have an appointment with a different Rhematologist that I have heard lots of good things about, but not until October.
Until I had other answers I would not be satisfied that MS has been ruled out. I wouldn't assume it's been ruled in yet either. One way or the other, you're still suffering, and in your shoes I would keep lookoing for answers.
I've never heard of a nerve biopsy being conducted in search of an MS diagnosis. I would continue to press for the C & T spine MRI's. also, have you seen an opthamologist?
Kyle
Here is the Neuro's notes updated from today's visit:
"Assessment and Plan
The following list includes any diagnoses that were discussed at your visit.
1. Pain in limb
2. Proximal muscle weakness
3. Abnormal reflex
4. Skin sensation disturbance
Discussion Note
A. PT WITH PAIN-- NUMBESS--WEAKNESS HERE FOR EMG TO EXCLUDE PNS DISEASE (FOCAL NEUROPATHY , RADICULOPATHY , POLYNEUROPATHY , MYOPATHY , NEUROMUSCULAR DISEASE.
B. GENERALIZED WEAKNESS AS WELL AS GRIP WEAKNESS COULD BE FROM FATIGUE OR OTHER FACTORS OR FROM CTS/PNS DISEASE. HOWEVER WITH WEAKNESS WITH PERIODIC FLUCTUATIONS NEED TO EXCLUDE NMJ DISEASE.
PLAN
1. EMG / NCS
2. REP STIM WITH EMG/NCS
3. AUTONOMIC SYMPATHETIC STUDIES "
I wish that I could understand any of this. And, I would like to understand WHY the nerve biopsy is needed. I am extremely nervous about anymore testing. Today was so painful. You would think that since I deal with so much pain every day, that I would be immune to it by now. But, it's like It's had the opposite effect. I am so tired of being in pain, that I am now so sensitive, that I just can't tolerate anything additional, whether that be bumping my elbow on something, or a small scratch. I just can't tolerate any extra pain, it's like it throws me over the edge. I don't if that makes any sense, but I am almost in tears just thinking about anymore painful testing....
Plus, it almost sounds like the Neuro's plan is to repeat the EMG/NCS. WHY??? If today's test was normal, what is the point in repeating it?
I have seen an Opthamologist several times over the past ten years with this eye issue. They always say everything looks normal.... When I had my MRI, the tech asked if I was diagnosed with Optic Neuritis, I said no. She said that if I had, she would have had to do different "tests" or screens, I can't remember the word she used, if I had ON. I am so frustrated. I feel like with my eye issues for so many years, that they should have definitely focused extra on my optic nerves, etc.... And they didn't.