First appt with neuro want to be prepared

[laurelle1973]

Hi all,

I am going to my first neuro appointment this week and want to make sure I don't forget anything. Although my gp has ruled out MS because a CT scan and MRI of brain came back ok I want to lay everything out so that this possibility is included.

My gp thinks it may just be migraines and that is possible. I am 37 now and initally just had neck pain + back of head headache and joint pain, tingling and stiffness along with dizziness on occasion. Sometimes it came with blurred vision and eye pain and afterwards it required a change in my glasses prescription.

Over the past 2 years the episodes started to occur more frequently and came with extreme exhaustion - the must lie down now kind. Then they started to occur regularly a few days into my menstrual cycle then over the past year the frequency increased to before during and a few days afterwards.

Dec 14th is when that changed. I started with what I thought was a migraine aura and it has been one thing after another since; dizziness, loss of balance (in hospital 2 times for this), numbess, tingling, tinnitus, pain, losing my words, saying the wrong words, stabbing pains in my ears, face, heaviness in arms/legs, weakness everywhere, sometimes walking feels like I'm balancing on stilts, often it feels like I just completed the work out of my life - everything is exhausted and tingling and much more - everyday since Dec 14th, not one day without something

I should also mention that I have a ton of visual disturbances, blurry vision left eye, spots, left eye moving slower than right, difficulty focusing, reading, seeing bright lights even when my eyes are closed - these hurt, shots of light if my cat jumps on my bed when I'm sleeping

When I talk with the neuro I want them to look at all possibilities and not just lump it as a migraine. The gp did give me migraine meds and clonazepam for the loss of balance but when the body and "heachache" pain hits even those along with Tylenol 1's don't do anything - they also don't get rid of the exhaustion and the vision issues

I was adopted so no family history to work from. How far back should I go in mine? I know that when I was a teenager I was tested for thoracic outlet syndrome which was inconclusive and at the time they did note some balance issues and repeated some nerve test on my left arm a few times.

10 yrs ago, my then gp questioned MS when I had foot pain, tingling and numbess but decided it was plantar faciitus.

5 yrs ago I had repeated tests done to determine the cause of stomach pain 1 yr after my gallbaldder was removed - The pain felt like there was a ball in my left side and a band around my chest under my rib cage - it eventually went away but I'm still on stomach meds for gastritus - not that they work but they are better tha nothing

In September last year I had what felt like repeated stabbing pains to my heart - my employer sent me to the hospital and it was not my heart - may have been stomach issues. It lasted 10 days and then stopped suddenly.

Starting in October I would hear things like a cell phone ringing and then everything would start to tighten in my jaw - right under my ear.

My question is how much of this is relevant....should I go back to age 17 with the TOS investigation?

I should also mention that I have BP2 and I am on medication (no manic episodes ever) so I like to be prepared because generally the first place they go is "how is your mental health" and generally 90% of doctors get stuck there and don't bother to find out if there is anything else wrong...then when I mention that my oldest son is autistic, that I work full time and I'm a single parent...it goes down hill from there.

Any suggestions that you have I would love to hear!

[HVAC]

Look at the health pages at the top of the screen at right under discussion there is a lot of information. I would leave out the Stomach what you experienced is common after gall bladder surgery it can take years for the body to adjust and MS is Neurological.

I would be quiet and let the Neurologist examine you and when he examines you present a one page concise time line. Because you are BP2 do not talk quickly,  do not be emotional or throw a lot of information at him or he will dismiss you as mental. This is good advice for anyone seeing a Neurologist.

They are logical and look for sign over symptoms. If they can't see it in their exams, reflexes, etc. or tests it is not real to them. They often follow you over time. They may have you come back in six months this is normal. They may want to blood work to rule out other diseases. MS is a diagnosis of excluding all other possibilities. You do not have MS to a Neurologist until you do. My vertigo, double vision, left side weakness, cognitive (things they could see) were caused by something else until they diagnosed it as MS.

I was diagnosed BP and no Doctor took me seriously until I learned to be quiet and show no emotion. Even my GP did not want me as a patient when I first walked in with the questionaire. Hell I do not fill out anything about mental on a Doctors questionaire after that. Doctors are human and BP is a great explanation.

After my GP sent me to the Neurologist because my reflexes showed no signals were going to my left side  and the Neurologist told the Doctor I did not have MS. My GP said "It is probably just Depression" I looked at her and said " How can Depression only effect the left side of your body?" She ran out of the room and got me an appointment with a MS Specialist.

Tests do not rule MS in or out. There are over 800 Neurological disorders and 30 non neurological diseases which mimic MS.

If they want to send you for a NeuroPsych Test do not be offended. Many of us have this test.

It can take years after going to a Neurologist for a Diagnosis even if you have had Neurological problems your whole life,

I would have all my medical records with you including a CD of the MRI. CTs do not show MS. What you say is heresay what a Doctor writes has more weight. It is a pain to get this stuff if you do not have it but it is worth it.

Also Neurologists Specialize. Few Specialize in MS. One who Specializes in headaches will probably not know much about MS.

What ever happens do not be discouraged. I was told I had MS by the first Neurologist but went through testing and was not diagnosed for two more years. Then again you may not have MS at all and it may take awhile to figure out what is going on. You probably will not get an answer right away.

Leave the heart/chest thing out. That will confuse the issue as well.

The trick with Migraines is you can have atypical ones. I have them which may not cause pain but I go blind. When I take migraine medication they will go away. My eye issues with MS do not go away with migraine medication.

Good luck.

Alex

[Sparkysarah]

I think I would make your timeline more succinct and precise without all the wordiness e.g.

Oct 2010   Ringing in ear and tightening feeling in jaw
Sept 2010 Felt stabbing pains in heart - hospital referral but no heart concerns

I am sure you get the picture. For a full medical history go back as far as you have symptoms and suggest that you go date chronologically putting most recent symptoms first.

I hope that you get some answers as you appear to have had a lot going on for many years.

Cheers

Sarah

PS I have a 19 year old autistic son also

[LATW]

It looks like you already have a good timeline set up!

I would print out what you have posted here and take it to the appointment.

Maybe not bring up the BP unless you are asked specifically about mental health issues.

LA dx'd