Hi I'm AspieDude

[aspiedude]

Hi I'm AspieDude. I'm stuck in limboland I guess. I've done tons of research into what has been making my life miserable and I think I have MS but I don't have an appointment to see the neurologist until 2/21. Here is a list of my symptoms, if I can remember all of them, lol (memory is one of my problems).

• muscle cramping
• extreme fatigue
• word finding difficulties
• memory issues
• bladder problems
• dizziness
• weakness
• eye pain and bluriness
• tingling

I think that's it, but I honestly could be dealing with other stuff that I can't even remember because things are so off. I think I went through a period like this once before a few years ago when I dealt with some issues related to a series of medications my doctor put me on for my HIV illness, but that was awhile back.

I just remember back then I was just as tired like now. I don't have a clear memory of what else went on then. I'm curious if the being HIV+ can in some way trigger an autoimmune illlness like MS.

I'm very nervous about my upcoming neuro appointment. I can barely function. I've had to buy a shower chair for my shower because I'm so tired I can't even stand up in the shower long enough. I'm sleeping about 12 hours a day and sometimes I sleep three days at a time. Prior to getting the seat, I showered once in three weeks and I've been barely eating because standing in the kitchen to prepare food wears me out.

Today I went to Target to get a few items and just walking the length of the store left me asleep in my recliner for three hours. My limbs feel so heavy and I just want to know what is going on and to be able to get help. When my nurse practitioner asked what I thought what was happening and I told her I thought it was MS she took me seriously and got the urgent neuro appointment, but apparently urgent at the time was three weeks away.

Maybe people here can help advise me, and if it really is MS, guide me in keeping my sanity. Blessings to everyone who is already fighting this battle. I know I'm already struggling to cope everyday with my symptoms without knowing what they are. I admire the courage of those who have already been diagnosed!

Oh yeah, I'm having a lot of trouble with coordination, like trouble with writing and typing and opening my pill jars and stuff.

[Sara Angela]

I'm sorry you are dealing with so muh! I pray you find answers soon!

As for shopping, you might want to find store that have scooters until you get your strength back.

Sara

[22cyclist]

Hi: I am sorry you are dealing with these problems. Nobody on here can tell you if you have MS for sure or not. You have not had any of the testing for MS yet. There are about 1:400 diseases the could be MS. The 1 being MS, and 400 being mimickers. With HIV, you could have one of many infections that mimic MS. You will not know until your neurologist starts testing. You will need an MRI, lots of blood drawn, possibly a lumbar puncture, possibly some evoked potential testing.

Sorry I can't offer you more advice, but your symptoms are general, like most MS symptoms, and Lupus symptoms, and Herpes infection symptoms, plus many other disease symptoms.

Your neurologist will get to the bottom of it though.

Feel better, and welcome to the site!
Lisa
Moderation Team

[aspiedude]

I just wanted to make a note that with my HIV as in control as it currently is, there should be no reason I should have any of the infections that mimic MS that occur in uncontrolled HIV. Lisa, you'd understand this with a medical background, but my viral load has been undetectable for a long time and my CD4's are well within the normal range. Plus, when I was first diagnosed with the virus I was tested for all of those things like PML and such. They only really occur in people with CD4s <200 which is AIDS. I'm nowhere near that sick.

[22cyclist]

That is great news! Well that is one of the 400 you can scratch off! An MRI will tell you and your docs a lot about your status. I am sure they will order one.

Glad you are doing well otherwise.
Lisa
Moderation Team

[aspiedude]

My primary care tried to order an MRI ahead of time (knowing this), but my Medicaid denied it. They are soooo annoying. When something ACTUALLY is wrong, they won't pay for it! I hope when the neurologist orders it it'll get paid for and they won't make me wait like three months or whatever because its Medicaid, lol.

[CaroleL]

Hello and Welcome aspiedude!

[aspiedude]

I called the neurologist this morning to make sure I have the earliest possible appointment because at this point with all of my symptoms I'm barely functioning. I spoke to the nurse and when I mentioned fatigue she basically said the neurologist couldn't do anything about that but that he could look into my memory problems and such. I hope its just the nurse that's just this sh*t stupid that doesn't realize fatigue can come with neuro problems. If the doctor thinks the same thing I'm freaking screwed and my hope of getting an accurate diagnosis of ANYTHING just went down the drain!!

OK, RANT OVER!

P.S. I'm so over having to retype what I type a billion times because my hands aren't working right anymore.

[HellsBells1]

Although I respect the nursing profession and believe there are many very capable and knowledgeable nurses, they are not doctors, and they are certainly not specialists. Just as you would take a neurologists opinion over a general practitioner when it comes to a neurological condition, you should not put too much stock into what a nurse tells you.

She may not know anything about dx'ing a condition. Also, if your neuro is not an MS specialist, his/her nurse team may not be regularly exposed to specific signs and sx of MS.

Don't worry about what she said. You'll just have to wait until you get into see the doc. Good luck!

[newbie but goodie]

Hi aspie! Sorry you're here but glad you found this forum, it's great.

In my own experience, Medicaid is much more "giving" (lol) when specialists order tests like MRI, etc. Not sure if it differs state to state or what, but once I got to a specialist I was able to get so much more covered.

I agree with Hells Bells about the nurse. Leave the diagnosis and treatment to the doctor. I hope the 21st comes quickly for you!

Also, I am so curious, what is the "aspie" for in your name?

[aspiedude]

The "aspie" in my name is a nickname for people with Asperger's Syndrome, which is a form of Autism Spectrum Disorder. I have this and am proud to be neuro-atypical.

An update-

My memory and coordination seem to either be getting worse or at least continuing their bad streak. Today the muscle cramping was really bad all day. I'm struggling my two day a week school schedule with the fatigue I'm dealing with. I slept from 10 pm Monday to 3:30 pm Tuesday because I was so tired after my day at school. Last week I slept three days in a row and needed to be hospitalized because I wasn't caring for myself.

I called and got an appointment with my family practitioner's outsource people tomorrow with the hope they will write a script for uhhh.... not phergan, umm that one that helps with fatigue.... stupid memory... oh yeah, Provigil. I'm desperate for something to make it so I can stay awake during the day and get through school.

One week and one day until I see my neuro. Its an eight thirty am. appointment. I have no idea how I'm going to get up that early with this horrible fatigue. Yuck!

[newbie but goodie]

I thought so- my brother has aspergers and we use the term aspie too Thanks for sharing that. I do hope your appointment goes ok and that you get some help with your fatigue.

For your 8:30 appointment can I suggest preparing the day before? Lay your clothes out, set up the coffee maker (just don't turn it on), shower, have everything you need ready so that all you have to spend your limited energy on is getting out the door. It will still be hard but you will minimize your stress just a little bit by having things ready in advance.

Good luck and let us know how it goes.

[aspiedude]

Today's appointment didn't result in a scripts for Provigil, but we are in the progress of ruling out thyroid issues, which will be a good start when I see the uhh, neurologist. My memory deterioration continues and today the onset of dizziness has begun.

My biggest fear is not being diagnosed with MS... that I could live with. My biggest fear is being told this is all in my head and having the doctor not bother to keep trying to figure out what the heck is going on (my therapist says this happens a lot to people with comorbid mental health diagnoses). I guess cancer is low on my list of preferred options too, lol.

I did manage to do laundry today thankfully. Just folding a few shirts was EXHAUSTING. I threw the rest of the clean stuff back in the hamper the dirty stuff had come out of originally and didn't bother putting anything away.

Caffeine is my friend. I'm on Concerta ER 27 mg but I had a morning coffee, a can of Mountain Dew, and a large latte just to stay awake through the day.

The fatigue is not just a sleepiness, but is also a body fatigue that makes my whole body feel like its melting and I can barely drag along. Does anyone relate?