Connect
Complex, wasting, unknown spinning wheels.
Hi I am new and at my wit's end. Told husband today I'm going to Mayo because I hear magic is done here.
Don't know where to begin. I will try to keep this basic.
Symptoms, falling, weakness, walking and standing limits are about 10 minutes before I start to feel faint. skin lesions severe dry skin, hair loss, double vision, dry eyes, gritty eyes, migraines and chronic daily headaches, confusion, dyslexia, memory and other LDS, I do movements all day long like restless leg, depression, bipolar, anxiety, agoraphobia, ocd, social anxiety, ptsd,(child abuse) panic, chronic pain, HORRID FATIGUE, apnea constipation, diarrhea, acid reflux, problems swallowing, seasonal and environmental allergies, my heart feels like it's beating out of my chest, also I don't exercise because of fear of falling, but whenever I exert myself in any way my body starts throbbing and in less than 30 minutes I feel like I'm going to faint.
Diagnosis thus far thyroid disease, diabetes, migraine, high cholesterol, high blood pressure, gastroparesis,
The most recent thing is my brain is full of lesions, and my ventricles are enlarged, atrophy and one of the one ventricle is larger than the other. Ms specialist jumped in right away.
Here's the problem. As always for the last 30 years been trying to figure out what's going on and nobody has answers. All I know is this if the lesions keep progressing it's going to take my life. I mean where do I start?
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
Hello @yodemo. Oh my goodness! I can’t even imagine what you’re all going through with this list of symptoms you’ve shared! No wonder you’re at your wit’s end! You’re very courageous to handle this so well but there comes a limit for sure! This would be the time for you to request an appointment with Mayo. I’ve had personal experience with Mayo and while they may not be magicians they do offer hope…with a little bit of magic. 😉
We have 3 campuses…one in Rochester, MN Phoenix, AZ and Jacksonville, FL. This is a link to their main website so that you can initiate a request for an appointment. http://mayocl.in/1mtmR63
Click on that link and just follow the prompts for New Patient. A coordinator will follow with your request.
With the lesions that were found in your brain and the weakness you’re experiencing, were you diagnosed with MS?
-
Like -
Helpful -
Hug
3 ReactionsI was diagnosed with MS in 2010 then un diagnosed in 2011. The next Dr said it was hbp lesions.
-
Like -
Helpful -
Hug
1 Reaction@yodemo, I really do encourage you to request an appointment at Mayo. If that isn’t an option for you, then maybe try a larger teaching hospital where they will work collaboratively with other doctors to find out what’s going on in your body!
I don’t know where you live but Mayo does partner with some health systems which meet with their high standards of care. Here is a map of the affiliated hospitals and clinics nation-wide that are in the program.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
Are you taking meds for all of your symptoms?
-
Like -
Helpful -
Hug
1 ReactionThe doctor removed the MS diagnosis and attributed the lesions to high blood pressure?
-
Like -
Helpful -
Hug
1 ReactionThank you for this info I'll check it. I am in Kentucky. Me meds are wonky. Albuterol
Allergy shots
Amphetamine dextroamphetamine
Asprin
Atorvastatin
Buspirone
Dupixent
Estradiol
Fexofenadine
Fluoxetine
Horizant, ER
Hydralazine
Hydrochlorothiazide
Ibuprofen
Lamotrigine
Montelukast
Myrbetriq
Np thyroid
Nystatin powder and cream
Pantoprazole 2x 40
Pepcid ac
Potassium 10 MEQ
Promethazine prn
Rizatriptan prn
Sucralfate
Topiramate
Trelegy inhaler
Tresiba
Tyrvaya nasal spray, dry eye
Yes. It's because the lab work doesn't say Ms. And the CSF doesn't say Ms.
-
Like -
Helpful -
Hug
1 ReactionGood morning, @yodemo. May I ask if you’ve ever had an evaluation with a pharmacist of all the meds you’re taking?
Many of these meds have their own side effects that could be causing some of your symptoms and the potential for serious drug interactions with each other. I hope you’re drinking a lot of water daily to help keep those meds flushed through…
If you’re not able to get to Mayo Clinic or Care Network Clinic like I mentioned before, have you considered seeing a Functional Medical Specialist? Here’s a website to find a practitioner in your area if you’re interested.
https://www.ifm.org/find-a-practitioner/
Functional medicine takes a more patient centered approach to medicine and addresses the whole person, not just an isolated set of symptoms. It might be worth trying.
You are rad. Thank you tons. I have never heard of a functional medical specialist before , and have really wanted somebody anybody look through my medication. It looks very messy huh? I get all mine through mail order. Do I call them? Also what should I tell them I don't want to flood them with unnecessary info.
Good morning, @yodemo. You made me chuckle this morning. I can’t remember the last time someone referred to me as rad! I’ll take it! 😅
I have to agree with you that your list of medications looks messy…honey, I don’t know how you get all of these down, injected or inhaled in a day’s time! Many of these meds on their own can cause some of the symptoms you’ve mentioned. So, combined…???
What I’m concerned about is that over the years you’ve most likely seen many doctors who have all prescribed treatments for you without knowing what other meds you’re taking.
The other concern is that you’re also getting these prescriptions through mail order and they may not all be from the same pharmacy. So, again, there might not be awareness of previous meds…do so see the potential problem?
I really do suggest an evaluation from a pharmacist or even your primary care physician. You need a ‘general contractor’ to sit down, review and consolidate everything you’re taking to see if there’s a contraindication or drug interaction or if they are all still necessary for your health.
Do your meds all come from the same mail order source? I don’t know if you get to speak with a pharmacist with that feature or not.
Maybe the best way to go about this is to call a local pharmacy to see if they would do a med evaluation. That you’re concerned you may be over medicated and would like a second opinion.
You would need to make an appointment and perhaps arrange a time to drop off or email the complete list of everything you’re taking along with dosages. That would give the pharmacist a chance to run it through a program for interactions. Pharmacists are swamped with not a lot of free time, so having a succinct list would be beneficial.
Avoid going into detail on your symptoms because they’d only be looking for drug interactions. Pharmacist’s can’t say if you need the meds or not. That’s up to your doctor. But at least you’d know if there are potential drug conflicts going on.
Or, call your primary care doctor and ask for a consult to go over meds. If it’s a larger clinic they may have an in-house pharmacist that will work with you.
You still may greatly benefit from a Functional Medical Specialist who could potentially be that general contractor for you. But in the meantime you can check with primary care provider or a pharmacist.
Think this is doable?? Let me know what you find out. Good luck. Lori ☺️
Geez... So these so called doctors are just trying to alleviate symptoms with drugs!! All these drugs are probably whats causing your problems and shame on these doctors for prescribing all of these!! You need to find someone to wean you off all these drugs and see if all your symptoms go away!! Looks like with all the drugs prescribed most of them are for allergies! Also possible sjorgrens syndrome. I have it and its dry eyes and mouth, acid reflux, cystitis, high blood sugars, thyroid problems and other symptoms. It is an autoimmune disease and unfortunately no cure. I suggest diet to help some of the symptoms as well as supplements but these drugs you are taking will make things worse!!