sheesh.world turned upside down, questions in red, little long

[gowiththeflow]

havent' been here to even read for a few days, my path has had some real major loops thrown into it. I hope everyone is making progress, and having the ebst quality of life possible.

so disturbed, one arm locked up more than hlf bent and hand went into closed fist, longest time ever. you would think body building was my hobby, the tightest muscles around. Look out Mr Universe - you have female competition!

unable to function this way, and with mroe people than ever counting on me, need to get myself on the right track! other symptoms in high gear as well. Trying to learn recommended diet and supplements, but exercise, even my normal home pt program hasn't been possible.

Question:
going to rethink not getting a full accurate diagnosis. going downhill fast, thought flare was over but nooooooo! more than a bit frightened. anyone who has started from zero, would you share best advice as I begin, yet again?

many of my records are long lost, about 12 years worth, my family doc became ill, and quickly passed from complications of his cancer treatment. they wanted 98 cents a page for records, I had 4 overflowing files and had started on 5th. just could not afford. now? no clue how to get them. then present doctor moved into a solo practice, and his old one only released a very short summary, so all I have is past 2.5 years. in my twenties only had ob/gyn's, was very isolated and in tough marriage situation, so no care or documentation of episodes.

Help please if able with suggestions? at my wits end - not too many wits to begin with anyhow.

Thanks in advance, wishing you healing,
Flow.

[22cyclist]

Flow: Have you seen an MS specialist? You can get a referral from any family doctor or general specialist. Since you have a new PCP, perhaps you can request a referral.

When you get one, be sure to write down your history chronologically for the neurologist.

You don't have to have your med records.

1. When symptoms started.
2. How long they lasted once they started.
3. When they stopped.
4. When they started again (best to place approximate dates), to give them evidence of time and space for McDonald criteria, and reason for MRI.
5. Any MRI dates if you have had any.
6. Other testing.
7. Progression of symptoms.

Your first appointment will be about 1.5 hours long or 1 hour long, and will entail a detailed neurological exam.

Have you had an MRI?

Best of luck.
Lisa

[gowiththeflow]

Flow: Have you seen an MS specialist? You can get a referral from any family doctor or general specialist. Since you have a new PCP, perhaps you can request a referral.

When you get one, be sure to write down your history chronologically for the neurologist.

You don't have to have your med records.

1. When symptoms started.
2. How long they lasted once they started.
3. When they stopped.
4. When they started again (best to place approximate dates), to give them evidence of time and space for McDonald criteria, and reason for MRI.
5. Any MRI dates if you have had any.
6. Other testing.
7. Progression of symptoms.

Your first appointment will be about 1.5 hours long or 1 hour long, and will entail a detailed neurological exam.

Have you had an MRI?

Best of luck.
Lisa

Hi Lisa and thanks so much. haven't even gotten a decent neuro workup, last neuro saw me 3 visits, did no tests but acknowledged deficits, had no clue what to do with me, threw 2 scripts at me and said so long. He is the only one in this area supposedly good and familiar with these issues? I disagree.

have to go an hour to 3+ away to find anyone familiar with ms or related neuro disorders. contacted the MS association today, and they have emailed me 4 they know of within a reasonable distance. Nice helpful folks. will make phone calls, see who is in network, and pick who ever by asking phone questions I feel wiill help. PCP had no clue who else to send me to.

in august had head and c spine mri to rule out fusion issues or oter things causing spinal cord pressure again, got an all clear, neuro surgeon said someone had def missed alot with me over the years. (but not the fancy imaging like done at the ms centers. no contrast used, am allergic. have my own copy to carry along.)

I saw white areas at back of brain from several angles, large enough to make me notice but what they are? The read was just to rule out the surgeon as being needed. no comments otherwise at all.

thanks for the list, will take time, 30 years ot cover if i count the hour in college when I went temp blind in both eyes for approx 2 hrs. nukmber of flares, episodes, whatever over the years, now seems like full time and worsening.

have lost faith in most modern western medicine, as treatments and meds have done me more harm than good, so prefer natural as much as possible. You can only hear learn to live with it, we have no clue, no help for you so many times before you begin to believe you have no power to help yourself.

I'm not giving up! I want quality of life just need to know how to deal with the challenges. sorry wrote a book, last few days in tears, pain, etc and even strong women have their limits.

thanks again,
~Flow

[22cyclist]

I have a couple of suggestions that will save you time and frustration:

1. Do not include episodes that lasted less than 24 hours. These are not considered true flares, or related to MS.
2. The blinding for a couple of hours will be put off as occular migraine. It will only piss you off...don't go through it.
3. With each flare...go through length of time each lasted, what made it better or worse, and how long it lasted.

4. Your MRIs without contrast are fine. Even if not fancy, they will work. You may have more ordered...probably will depending on your physical exam. Contrast is not a must.

What are your other symptoms?

[gowiththeflow]

I have a couple of suggestions that will save you time and frustration:

1. Do not include episodes that lasted less than 24 hours. These are not considered true flares, or related to MS.
2. The blinding for a couple of hours will be put off as occular migraine. It will only piss you off...don't go through it.
3. With each flare...go through length of time each lasted, what made it better or worse, and how long it lasted.

4. Your MRIs without contrast are fine. Even if not fancy, they will work. You may have more ordered...probably will depending on your physical exam. Contrast is not a must.

What are your other symptoms?

Lisa, thanks for the tips. taking notes here!

this list is hard to get through, have to be honest and not cover up and put on the happy face like nothing is wrong. you know, the invincible, strong, dependable, take care of everyone else mindset. may leave something important out.

other symptoms include (get out your reading glasses, long)

a foot that twists, worse the more i walk,

fatigue so severe have had weeks where I did well to hit the bathroom much less shower,

episodes of my right arm folding with curled fist into my chest and complete loss of speech (TIA's ruled out)cognitive difficulties especially mixing up wordsin their order in a sentence, memory challenges,

repeated inflammatory uveitis in left eye and increased pressure in that eye that comes and goes according to my flare or not status,

right leg will collapse from under me when walking,

constant muscle spasms including face except for abdomen,

urinary incontinence only when in time of more challenge,

hands and arms extremely weak (was stronger and better until this last flare up hit),

body wide OA,

difficulty sleeping,

very heat intolerant,

react to most pharma meds, processed foods cleaners and hba products,

body posture leans to one side when standing (not spinal),

nerve pain,

high cholestrerol and triglycerides, slight skin pigmentation issues (white spots vivible on forearms and face),

hoarse voice that fades into none for as long as 3 months at a time, and never surprised as each day can bring something new or worsened.

1 nerve going down same leg as twisted foot shows zero electrical activity on nerve conduction tests. no idea why. arm nerve conduction testing about 6 years back showed raised acivity, left the neuro very puzzled.

lupus, and ra have been ruled out. conflicting ANA tests, first one done while in a flare was positive, took months to get appointment with rheumy who tested me out as negative and i was out of the flare up.

3 seperate people who are close to me know my challenges, and each without the other's knowledge asked me if i could possibly have MS. One parent is from the north, and we spent approx 10 years there while growing up. also, all european ancestery if that makes any difference.
Here in the southeast, an MS diagnosis is far less frequent. 2 immediate family members have autoimmune disease.

whatever this is, is worsening. quality of life suffering. the more read about ms, the more it seems me as a puzzle makes sense, rather than the full alphabet soup list of diagnosis I have been labeled with. am not a hypochondriac, and this is not psychosomatic in origin. is overwhelming and frustrating though.

I live clean. try to eat well, whole foods organic when can get, cook from scrath, do stress reduction, anything can think of to be proactive and reain hopeful and positive. take care of body mind and spirit. glass half full kind of gal.

Now that you have TMI and my stuff is out here for the world to see.....

Thanks for your help and kidness and patience, a blessing.
` flow
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[22cyclist]

Any numbness or tingling?

[Echo2099]

I live in Ohio, and around here, if your PCP gives you a referral to a specialist, the PCP sends all of the chart he has on you to the specialist. Then, the specialist will have a first visit with you and you will sign a consent for release of information. After signing the consent, the specialists office will find the contact info for any prior doctors you have visited, send them a copy of the consent, and request your past records.

Also, in my experience, the Neuros I have seen, would rather have me give them my history than read some other doctors opinion of what symptoms were. Also, although I have 25 years worth of every MRI, xray, and the corresponding written report performed on me, my neuro was only interested in the ones taken in the last two years.

Additionally, in my experience, any new Neuro I have been to has always wanted NEW MRIs, blood work, etc. Doctors seem to want their own baseline set of tests, done by the labs and departments in which they are familiar and confident. They want to know where things stand with a new patient at the time of the first visit. With that baseline to work from, they can document any new symptoms, remission, or progression.

Hopefully, your PCP is willing to make the referral for you. He can either suggest where to go, or you can do some research and tell your PCP what clinic you want to go to. Last week, I called my PCP's office and asked them to make a referral for me to Mellen MS Clinic in Cleveland. They called, and I now have an appointment at Mellen the end of this month. Seems a referral from your PCP gets you an appointment pretty quick.

I hope the symptoms ease up for you and I hope you find the answers and the care you need!

[gowiththeflow]

Any numbness or tingling?

yes to tingling. some in the more challenged hand and arm, sometimes face, especially left side and left side of head like a line drawn down the center, the side of face that has spazzed up to make me look like popeye at times. (not Bell's palsy, ruled out) back of upper legs, but it comes and goes, not permanent like in peripheral nerve damage.

Numbness is usually brought on when in same position too long, like exhausted to the point of finally sleeping so hard i do not move. usually worse again in right leg and twisted foot, left arm shoulder to finger tips.

don't know if this is relevant, but forgot to mention classic migraine since age 3. thyroid always comes back in normal range on blood labs, started checking that when I was 12. present PCP checks it every 3 months, not sure why but think it is my weight, always been a light eater, body just thinks in starvation mode most likely.

[gowiththeflow]

I hope the symptoms ease up for you and I hope you find the answers and the care you need!

thanks so much Echo for sharing your own experiences. mush appreciated.

yes, all along everyone wants their own tests. is not great though if they can use prior and save you from eating away at your max policy insurance cap.

that said, need the neuro work up, well done, then see if need to be seen at certified ms center 3+ hours away. ravel is difficult, so stops needed every 45 minutes to walk a bit and stretch. staying still too long causes muscles and joints to lock up on me, moving huge challenge afterwards.

thank you for encouraging wishes. don't want this to be my diagnosis, but if known what you are dealing with you know how to make proper informed choices. hope your day is full of fewer challenges.

[22cyclist]

Well, be sure to just take your questions and history to the MS specialist. They will sort it out. It is worth it.

To be honest, it doesn't jump out as classic MS symptoms, but no two people are alike. You will need new MRIs for sure. You should have your calcium and parathyroid checked. They will do this as well.

Good luck. I hope it works out. Let us know how it goes, OK?

Feel better soon!

[gowiththeflow]

thank you so much

Well, be sure to just take your questions and history to the MS specialist. They will sort it out. It is worth it.

To be honest, it doesn't jump out as classic MS symptoms, but no two people are alike. You will need new MRIs for sure. You should have your calcium and parathyroid checked. They will do this as well.

Good luck. I hope it works out. Let us know how it goes, OK?

Feel better soon!

Lisa, I appreciate your honest input a a diagnosed ms patient as well as RN. I am actully a bit relieved that you say this doesn't sound like classic MS from my symptoms and I did leave out a few things - you know, the old brian breaking wind, lol.

Unfortunatly, my stress level is through the roof due to responsibilities hubby and i took on, a placement here with us of 2 young relatives whose mom has to clean up and work a program in order to regain custody, we only have 2 of the 4.

They have far more issues I can't discuss here that no one has done anything to help, and my symptoms are worsening by the day.

I'm too good hearted for my own good sometimes. I am their primary caregiver, and my other health issues are also in full form, so this may be way out of my physical ability and skill set to handle.

I'm not a trained childhood trauma specialist or pscychologist. And with their case worker handing them over and no returned phone calls since last weds? we are blowing in the breeze here with no support.

I pulled out my august mri again to look, and noticed something else that blew my mind (had checked online for what normal brain images look like so to have a base for comparison). The right side of my brain(left on the images as they are reversed) has a significantly larger space of fluid beneath it than the left. Not like this on MRI's from over the years.

So, now have more than a bit of feeling of urgency to get evaluated, esp with movement disorder back worse than ever. What normally stops it from going full body no longer works, and am useless for up to four hours at a time.

wrote a book, sorry . bit frustrated and concerned. again, many thanks.
~flow

[22cyclist]

Flow: Do you have a copy of the Radiologists report of your MRI? If so, what does the IMPRESSION portion say?

Don't get caught up in the images. That fluid you see could be technique that the tech used, how your head was positioned etc. Lots of times due to technique the sides look asymmetrical on certain frames. Especially on Axial frames. It has to due with how the machine slices, the rate, and how your head is positioned.

That said, try to get a copy of the radiology report and post it if you feel like it.

Your neurologist will go over everything, all images, reports, the whole business. He/she will probably order new ones.