How to get a diagnosis

[freesiagirl]

I got sick with some sort of virus over 20 years ago (mono-like). Since then, I have never been the same. I had been doing a bit better (after being put on Prednisone 6-7 years ago), but just went through some incredible stressful stuff with my family, and the last few months I have been so much worse. I am just a wreck. Over the years, I have been to lots of different doctors, tests. Etc... With no diagnosis. I need to start again in trying to find a diagnosis and getting help, but I am so overwhelmed at the thought of trying to search out a doctor again. I have had a ct scan about 8 or 9 years ago, and an MRI about 6 or 7 years ago. One was to check and see if there was a reason why why pupils will be different sizes sometimes, and the other was to check my pituitary as I have pituitary insufficiency (pituitary doesn't make enough ACTH telling my body to make cortisol). Both were fine, no abnormalities.
I have an apptmt with the eye doctor in the morning (eye / pupil problem is getting worse). I was thinking of asking to be referred to a neurologist. But, I just can't afford to go to yet another doctor who doesn't help me. I don't know if I should go to a neurologist and how do I pick a good one? Or should I go to some other sort of doctor entirely? I am just so overwhelmed right now. Also, before I started Prednisone, I used to have hip/joint pain so bad, that some days I could not walk. I would have to use those motorized buggies in the grocery store. I thought it was from a childhood injury, but when I went to an orthopedic doctor, they did an ex ray, and they couldn't even tell that it had ever been broken, so they said it must be bursitis. Plus the pain was both hips and I had only broken one leg. Going on Prednisone has helped a lot with that, so it doesn't happen as often. But it is getting worse again. Also,I have tendinitis in both elbows that comes and goes. I started a list of symptoms last night, it's not complete yet, but is probably most of them.

Eye twitching
Droopy eyelids when tired
Pupils different sizes randomly, off center in iris, sometimes one pupil will be oval shaped
Eyeballs / eye sockets often ache
Sensitivity to light
Difficulty seeing at night

Fingers numb (right hand, index and middle fingers from first knuckle joint to tip of fingers)
Random severe shooting pains in limbs
Random twitching in muscles (mostly legs - thighs)
Muscle weakness
Tremors in hands
Legs will shake uncontrollably with very minimal exertion

Terrible memory loss
Difficulty concentrating
Have to really strain to remember things or to concentrate or make decisions
Poor balance (I fall often, and am very clumsy)

Severe fatigue, never feel rested

Cannot tolerate heat

Dry skin
Large pores on face
Red rash on cheeks
Bruise easily
Dandruff, dry skin and sores on scalp
Thinning, dry hair

Nauseas often
Dizzy often

Can sometimes hear heart beating/pulse in ears

Sleep apnea
Night terrors

Bladder issues (leakage especially when I cough)

Migraines
Frequent sinus infections
Chronic sinus congestion

Choking (often choke on liquids).
Sometimes feel like I can't swallow my food

Anxiety, feel overwhelmed often
Emotions all over the map (cry over nothing). Difficulty hearing when there is background noise (I feel like my ears are stopped up) Shortness of breath from doing anything Difficulty breathing, sometimes feel like something is pushing or squeezing my lungs and abdomen, or like I can't get enough air I have been diagnosed with Hashimoto's thyroiditis and pituitary insufficiency, but there has to be something else going on.....

I fell two nights ago, off of my front porch. Face forward and down. I had also fallen the day before, but I thought it was maybe my sandals. They were 1 inch wedge sandals, not high by any means. But, then falling two days in a row? didn't feel faint or dizzy or anything when I fell, I just fell for no reason.

I had called the ophthalmologist last week, and had an apptmt early this morning. The doctor didn't see anything wrong with my eyes, but he did refer me to a neurologist. My apptmt is may 13th. And they will fill me in if they have a cancellation. At this point, I am about afraid to even walk.... :-(

I am just tired of trying to get a diagnosis,  I have been struggling with this for over 20 years.  I am so tired of going to a new doctor, thinking maybe they will help me, and they don't or maybe they figure out a small piece of the puzzle, but not the big picture.

I recently keep coming back to MS, when I research.   Should, I mention my concern to the neurologist when I see him, and request specific tests (and what would those tests be?). Or should I just to in and tell him my symptoms  and see what he comes up with?  

[freesiagirl]

I am updating again.  Ten years later, and I still do not have answers.  I have been preoccupied with life issues, and also now have a pacemaker, diastolic heart failure, and mild pulmonary hypertension.
I have just been ignoring my balance and mobility issues, etc… because I just thought there would never be any answers.  I am fully disabled now.  I either hold on to a family member, or have to use a cane, rollator, or mobility scooter (for longer walking).  My neuropathy is now in both feet and legs almost up to my knees.

About 6-7 months ago, I started having a Tremor in my left leg.  I have had this occasionally in the past, and I thought it was due to needing to updose my Prednisone (adrenal Insufficiency), but it gradually got worse and worse, to where it was happening many, many times a day. And was now happening when I stand, my whole leg will start shaking.  I already had a brain Mri, and Mra, checking my pituitary in for Arteritis.  There was white matter on the left side that they said, was most commonly seen with microvascular chronic ischemia.  But then the MRA said there was no signs of ischemia.

I went back to Neuro, he did some exam things, like checking my reflexes etc….  Said, I have Clonus, spasticity and hyperreflexia.  He did eeg and a test where I watched a screen with patterns.  I believe he said those were both normal.  I am scheduled for a C & T spine MRI’s in a week and a half.  
In his visit notes, he is leaning towards ALS, but I don’t think that could be right, as my symptoms have been going on too long.  

[kwarendorf]

Hi and thanks for the update.

I'm glad to hear that you are making progress towards answers. Even if the progress is a MoThr F'er  :-)

Kyle

[freesiagirl]

I just realized that I haven't updAted.  So, I believe the neuro has ruled out MS for now.  He did say that I have a MTHFR genetic mutation A1298c, and it can cause neurological and nerve symptoms.  Basically, he said that I do have neuro/nerve symptoms, but there is no nerve or brain damage, so he thinks it may be the MTHFR causing the symptoms, so prescribed PodiaPN and B2 and baby aspirin.  I joined a MTHFR group on Facebook and am pursuing this to see if it is the root of my issues.

[freesiagirl]

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.  

[freesiagirl]

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?

[kwarendorf]

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

[freesiagirl]

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.

[freesiagirl]

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.

[freesiagirl]

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. :(

[freesiagirl]

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.

[cramp_n_mystyle]

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"!

[freesiagirl]

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.  

[freesiagirl]

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."

[freesiagirl]

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????

[freesiagirl]

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.  

[freesiagirl]

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.

[kwarendorf]

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

[freesiagirl]

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"

[PeninaD]

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.

[kwarendorf]

I agree with Quix. Looks like you found a keeper :-)

Kyle

[freesiagirl]

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.

[Quixotic1]

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

[freesiagirl]

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.

[freesiagirl]

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"