MS: I went to my family doctor around the... - My MSAA Community

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Grizzly7168
Grizzly7168
22 Replies

I went to my family doctor around the beginning of June because I was having balance and memory loss as well a fatigue issues. She indicated that she thought I may have MS so she sent me to a neurologist . He then sent me for a MRI it came back that I have some brain lesions. When I saw him Friday he wants to be sure what is causing them like is it MS or a circulation problem so now I am going for PET scan as well as a ultra sound on my heart and main artery in my neck I am also going to have to wear a heart halter for 24hrs. If anyone has any ideas of what to expect I would love to hear from you. Thankyou Janice

PS I am also claustrophopic ( SP )

22 Replies
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ssdw1958

Well I have to say I would keep your doctor because my doctor did not listen to me and I had to diagnose myself. I woulwait for the results and ask your doctor if he/she would know a good neurologist then I would find out all the information about that Neurologist. Or you can start looking for a neurologist. Then the course of action is to see what stage level MS you are.

Then see what they want to do?

There is a lot of waiting right now to see what level MS you have..

Bye for now.

ssdw1958

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Grizzly7168

Sorry to sound dumb but I did not know there was a stage level MS . What does this mean ? I was also told that MS is more prone to women in their 30"s not in their late 50"s I am 59. so it was more likely to be circulation .

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mrsmike9buffering

I was diagnosed at age 55 so don't let that age hang you up. Mine is definitely MS. Have they done a spinal tap?

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Grizzly7168

No not yet my specialist did mention it but he also said I could wait until the results of the other test come back. Spinal tap really scares me because of the severe Ostio arthritis I have in my back. Plus I heard they hurt like hell.

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mrsmike9buffering

I've had two. I was so scared the first time because I had heard they were painful as well. The first shot (which numbs the area) stung but wasn't much worse than any other shot. The actual tap I just felt pressure. It wasn't nearly as bad as I had feared. The second time I wasn't scared at all.

The big thing is to stay FLAT afterwards as long as they tell you because you can get a fierce headache. I followed their instructions to a "T" because I didn't want that and avoided it completely. When I would get out of bed to go to the bathroom I had perfect posture! I didn't want to mess anything up!

So don't be afraid if they say you need one. If I had to have another, I'd go in a heartbeat.

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Grizzly7168

Oh thankyou for giving me an idea of what to expect. I know about the headache I had a mileagram years ago and I had to drive 2 hrs home so by the time I got there I knew I was not going to get away from the headache. Thankyou again have a great day !

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mrsmike9buffering

Have someone else drive you there and drive you home. I kept my back really straight until I could get home and lay on my bed. It helps!

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dianekjs

Grizzly7168, I clearly should have finished reading the thread before posting my prior message! I was very nervous about the lumbar puncture, but there was no pain associated with the actual procedure. It was a bit unpleasant with a slightly creepy sensation, but it's all fairly quick. I had a persistent headache the following day and ended up having to spend an extra 24-hrs. flat on my back, but overall the idea of it is the worst part, not the procedure itself. I do think the skill of the doctor performing it matters, so if you have to have it done, you may want to make sure whoever's doing it is very experienced in the technique.

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Nom_De_Plume

Grizzly7168

I agree with dianekjs. Experience with performing the LP is important, as with any procedure. If you are going to a teaching hospital, this would be a good time to decline having a medical student’s help. 😉

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cljones
cljones
in reply to Grizzly7168

@grizzly7168 I was finally diagnosed at age 55. Now I can look back and see several things that I ignored that were ms related. I had to diagnosis myself. Even the Nero didn't believe I had it because I didn't have vision problems. I had several people ask me "have they checked you for ms?" One was a hairdresser were I get my hair cut that has ms. Do your research. It is not uncommon for them not to diagnosis you until you are older.

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Grizzly7168
Grizzly7168
in reply to cljones

Because I am 59 I have people saying that it is not likely to be MS will just have wait and see.

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dianekjs

Grizzly7168, I don't think they stage MS. The highest incidence of MS is among younger women, but it does occur later in life. My first symptoms showed up around 2 years ago when I was in my mid-fifties. Unfortunately, it is more apt to be PPMS when it starts later on. Have they mentioned a lumbar puncture? That is often the next step after MRI if a diagnosis is not clear. Did they get an MRI scan of your spine, or just the brain? Both are generally needed for diagnosis. Best of luck with all of your testing, and please let us know what you find out and how you're doing.

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Raingrrl

Hi Grizzly7168! It sounds like the neuro you went to is on top of things. That's half the battle! There are other things besides MS that can cause brain lesions and mimic MS symptoms. You don't want to be taking the MS drugs if its something else. Here is a link to a page on the National MS Society website that lists other things that should be ruled out - nationalmssociety.org/Sympt... Good luck to you!

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erash

Grizzly7168 if u r asking what the tests are like...

The ultrasound is simply a small wand like camera that is rolled over your heart and neck. A cool gel is applied to the skin. He's looking for vascular or valvular heart problems that could cause compromised blood flow to the brain and subsequent dizziness etc.

The pet scan should be no worse than an MRI as far as claustrophobia. Is it a full body PET? Pet scans look for areas in the body that are hyper-metabolic, producing more energy, and they're nonspecific. If a suspicious area lights up, further testing has to be done to determine why?

Hope that what u wanted to know and good luck!

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Jesmcd2
Jesmcd2CommunityAmbassador

Hi Grizzly7168 Welcome to the MSAA Community 😊. I'm happy to hear your Dr seems to be ruling out other things 1st.

I was dx'ed at 49, and now 52. So I've come to the conclusion that it doesn't matter how old you are. 😊

Keep your chin up! And keep us updated on your scans.😊

Jes 🌠👻

P.S. There is all kinds of info on MS, and it can be scary, and like the others said, it can mimic all kinds of things. So get a def. Dx 1st. Which I hope you DON'T get!💕

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goatgal

Grizzley7168 I'll chime in here to echo several themes in your post. First, what a great family doctor!. She's a keeper (be sure to tell her so!) If any of the internists I had seen over the years had been good listeners or even thoughtful practioners, I might have been diagnosed decades sooner since my first MS exacerbation was optic neuritis that did permanent damage to one eye. As it was, twenty years later with increasing neurological symptoms, I self referred to a neurologist, and was diagnosed at age 70 with MS (lesions on the brain, cervical and thoracic spinal cord). Now, at 77, it's sort of difficult to tease apart what symptoms are due to MS and which to advancing age, but I think I am doing well with whatever form of MS that I have. I do visit a MS clinic at a major university medical center about 40 miles away and at this point can drive there and back without problems. I am truly blessed that I am able to live alone on four acres, in a very rural area, care for myself, and do what I love to do. Yes, it is difficult to subject ourselves to poking and prodding and regular MRIs, and very difficult to deal with manifestations and exacerbations, but as a friend's father said long ago, every day is new: I love the possibility held by every new day. Perhaps my screen name should be Pollyanna.

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greaterexp
greaterexpCommunityAmbassador

Grizzly7168, I’m sorry there is any need, but glad you found us. I’m happy you have doctors who are listening and being thorough. Many here have had diagnosis delayed for years and years.

Please keep us updated about your test results. I’ll be praying for clarity for you and your doctors.

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Grizzly7168

Thankyou everyone for your words of encouragement I really do appreciate them. Yes absolutely my doc is a keeper. The specialist has been on top of everything as well so I know I well taken care of. Just one silly question is the PET scan like going into a long tube like the MRI I took meds for my MRI because I am clostrophobic ( sheesh bad spelling ) Heart disease runs in my family so will just have to wait and see what turns up

Thanks again

Janice

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Patricia2015

Hi Janice,

A MRI tube is much more narrow and longer than a PET-scan. Also most PET-scans only take 10-15 mins of scanning (however usually 2 hours preparation).

I had multiple MRI-scans and one PET FDG-scan. I thought the PET was far more easier.

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Nom_De_Plume

Grizzly7168

Hi Janice, I think your questions have been answered? I just wanted to say that, while I hope that your diagnosis is something more benign than MS, if it does turn out to be MS, this is a wonderfully supportive forum that you have found! I joined in June and have learned SO much here. It also helps, of course, to chat with folks who can relate to what you're experiencing.

Best wishes!

Lisa

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Grizzly7168

Thankyou all for you replies and information I am a bit scared but feel like it will be ok . I am booked for foot surgery November 28th so I hope the test are done by then. The one test that really has me worried is the spinal tap.

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mrsmike9buffering

As I said above, if you can do foot surgery, you can do the spinal tap! I think you will be surprised at how it's not nearly as bad as you think it will be!

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